Help on mentally preparing myself to start taking meds

[forrest]

Hi everyone,

Wow - feels weird... this is my first post... first time doing anything like this... I've been reading a TON on here since April and just finally got the courage to get an account. 

I tested positive in April 2011 and have been seeing an ID doctor since.  I've also been learning a ton over the past months, etc. - thanks a lot to this site!  I've been struggling with which med to go on - Complera or Atripla.  Have spent hours in my doctors office and just recently decided to go with Complera - mostly due to a long history of lipid issues with myself and also the CNS affects of Atripla versus slightly less with Complera (I guess).  He said he cautiously nods his head to Complera for me.

What I am struggling with is STARTING the meds.  My parents and close friends don't understand why I am struggling with starting.  To a degree I can understand them.  However, it's not them starting these meds that I will have to take for the rest of my life... and make sure I take them EVERY day... and with Complera, take with at least 400-500 calorie meal... etc. etc. etc.

I've looked a lot on here for others who have struggled with coming to grips with taking the meds and haven't really seen much - in case I have looked in the wrong place    I know that I need to take start taking them.  I know of the importance of them.  I know my body will be better off with them and not feel so stinking fatigued all the time.  But why am I struggling so much with what seems should be so simple? 

Has anyone else experienced this?  How did you overcome it?  I appreciate the feedback and really want to thank everyone that posts on here because it has totally helped me over the months learning about side affects, etc. etc. This is a great site!  Thanks for your input.  It feels very strange for me to reach out to complete strangers asking for help.  But I am struggling with starting these meds and am hoping maybe some others have gone through these feelings?  Thanks again!

[wolfter]

This is a common topic in the "I just tested poz" forums.  I'm not good at copying and pasting links or I would direct you towards a couple.  You can also go to the search function on the bottom left and search key words like; starting meds, new meds...etc...

My pat answer is; do you have this much concern for ALL of the other things you must do everyday for the rest of you life?  I guess living with HIV for many years before drugs were even available, I'll never completely understand the hesitancy.  I popped my first ones with pleasure. 

You will find numerous people here who are currently or recently dealing/dealt with this issue. 

Best of luck and take care.

Wolfie

[Ann]

Hi Forrest, welcome to the forums.

You're numbers are great! You are in no immediate danger. You can certainly take a few more months to come to terms and become more comfortable with the idea of taking meds.

It may help if you were to find a therapist you can hash this out with in the meantime.

I've been poz for coming up on fifteen years and I'm still not on meds (infected in the spring of '97, but not diagnosed until 2001 - my eleven year diagnosis anniversary is coming up on the 22nd of this month). My numbers are very similar to yours and pretty much have been for the entire time I've been monitoring them.

The reason I'm not yet on meds is because according to the treatment guidelines we go by in the UK, my numbers do not yet indicate the need for meds. Otherwise, I'm fully ready to start. It did take me some time to get to this point, but I'm there now and have been for quite a few years. You'll get there too.

Please don't panic and think you HAVE to start RIGHT NOW. In my opinion, given your numbers, it's more important that you are mentally and emotionally ready to start. You have the luxury of having numbers that will allow you some time to get to that point.

Hang in there - it gets better.

Ann

[newt]

Doing new "big" things that look like a long drop, maybe a parachute jump or the like, seems daunting. I think it is perfectly reasonable to feel daunted.

Maybe the block is because starting meds is an absolute confirmation that you have HIV, or treatment somehow equates to the beginning of the end, a brake before illness and death rather effective medicine that will keep you well, or meds with their day in day out obligation and regular eating is a prison, daily reminder, difficult and you may not do it proper for the meds to work, or side effects will make you feel ill/look AIDSy/become a zombie. Yes this or that and perhaps many other stories...

Your CD4 count is very good and you can take time to think this over, even as Ann suggests with a professional.

I am sure you eat at least one proper meal a day, and have done since you were very young, so what is the real food issue? Taking meds, in my experience and that of nearly all my friends, is pretty dull. Plus, they are a route to a fast, if not instant (but certainly fast), restoration of energy levels, so bye bye fatigue.

Meds are for the foreseeable future. HIV treatment is developing rapidly. Treatment you use now will be old hat in 5 years and radically different in 10. Expect it to be simpler and kinder by then (5 or 10 years time).

- matt

[mecch]

However, it's not them starting these meds that I will have to take for the rest of my life... and make sure I take them EVERY day... and with Complera, take with at least 400-500 calorie meal... etc. etc. etc.

Welcome to the forum.

I read your post and I dont see much, besides the above, specific about what contributes to your hesitancy about starting.

Maybe if you could think a bit more and list out some contributing factors, we could respond to each.

I see two factors in the quote above.

1) The drugs are for life....   Yes, I guess so for me, I'm middle aged.  I am guessing you are young?   I don't think everyone will be on HAART 50 years from now....   Also the "drugs are forl life" can be "read" two ways.  It also means, as you know, that the drugs preserve life!  In my case normal health.  That's good.

2) Its a daily commitment.  Well, for the moment, yes it is.  I read again this week that there is still progress on the "patch" that would work for 1-week.  And we can imagine that there will be other longer-term drug delivery solutions as time goes by. 

Personally I didn't have this hesitancy about the every day aspect of HAART.  It seems like such a minor annoyance that when people say that, some of us who didn't have the hesitancy wonder of its not a symbolic factor, standing in for other hesitancies, fears, issues, etc. 

For example, I've heard some people in your shoes say it like - "it's a reminder every day I have HIV."  Is that the issue? 

Or, people who don't like or can't manage obligations, it can cause anxiety?  Worried that you can't manage daily adherence, is that it?

You are sitting pretty.  You have regular blood work, access to meds, a supportive family.  And your immune system isn't collapsing. So you can address what the real issues are. 

On the other hand, if by any chance some one is a naturally anxious type, or over-thinker, or worrier, or ruminator, than "time to think" isn't always an advantage. 

I bet I would have become a ruminator about HAART and my body and my HIV infection, worried all the time about how I was doing without medicine, or how the medicine might change my life, etc, etc, but I only had a few months from seroconversion to HAART.  I wasn't doing well, at all, didn't feel well, and was skinny and weak quite fast. So when the doc said it was my time, I took it and didn't look back.

Just goes to show there are always two sides (seeming contradictions) to most realities. 

Like the "HAART is for life thing."  Yeah, what a drag, but also how amazing is that!

[emeraldize]

Hi Forrest,

I don't sense by what you've written that you're in a panic--and everything you've written reads as normal pondering process to me. Your doctor may be guiding you according to the advice that people start meds once their CD4 count goes below 500--which means he or she is taking a considered approach advised by the NIH.

Here's a link to some information. http://www.aidsinfo.nih.gov/ContentFiles/StartingAnti-HIVMeds_FS_en.pdf and there's plenty more out there.

One angle you might want to take is thinking of those who never had a shot at taking meds --either due to them not being yet available or access. But, you've written one of the best reasons to envision taking them more easily--that you'll simply start feeling better!

I don't mean to shake up your thinking yet again, but has your doctor put Isentress in the mix of drugs you could take? While it's a two-time a day regimen, most everyone here who's on it has had a good experience with it. There's no rule regarding taking with a certain calorie meal, no CNS issues, etc. If it's an option for you, I suggest you search Isentress here and just see the various aspects of it that have been discussed.

I went for 7 years past diagnosis before starting meds with full, regular care from good ID docs. Knowing what I know now, I would have started earlier. Despite my numbers being "good" with a CD4 count near yours and VL never above a couple thousand, what changed my mind is what my one doc said -- that she felt my system was likely fighting like hell to keep the numbers as they were.

You mentioned not finding much evidence of people struggling with the decision making process. I think there is evidence throughout threads of denial, the want to delay as long as possible, the concern about possible side effects, etc. Just like the virus, the decision process is different for everyone, including being on death's doorstep, not having any time to think in order to live.

You're getting lots of advice including your doc's-- you'll figure out the path that feels best for you.

Em

 

[OneTampa]

Hello Forrest,

Welcome to the forums.

I fully agree with what other Board members have posted.

This is my 27th year HIV positive starting from a less than 80 CD4 count and I have taken meds nearly the entire time (starting with AZT in the 1980s) with very good adherence and a fairly decent quality of life along the way.  I am sure that greatly contributed to me being able to live to type the tale today.

All I can offer aside from what others have said is that taking meds as prescribed by your doctor will help you "live". With the changing medical landscape, things continue to improve and may become even better down the road as Matt notes. Don't you want to be there when they do?

I am sending you best wishes as you work through what are normal feelings of hesitation.

Take care.

[csguy1]

Hey Forrest welcome to the forums. I can understand you hesitation however I really don't think you should stress yourself out from taking a 1 a day pill. You won't even notice any changes in your mental or physical health other then maybe restoring your energy level, preventing the virus from further damaging your immune system, and also if you do engage in sexual activity will limit transmission of the virus significantly. So all those reasons sound like a no brainer to me. There are alot of new meds out there one of them being complera, which all of them include no to little side affects again depending on the person. So if complera just doesn't agree with you, which I think you willl be entirely fine on it i know someone personally who just started it and is living a normal life side affect free, you can simply talk to your doc and find something that will. Don't let it stress you out, you have so many other things to worry about it, taking a pill as you would a vitamin C once a day shouldn't be something to dwell on. Best of luck I know you will be fine!

[aztecan]

Hey Forrest,

First, welcome to the forums.

As to the meds, one way I found that makes it seem a lot easier for people is to ease into it.

Do you take a multivitamin every day? If not, try taking one. You will most likely find that, after a brief period, it will simply be second nature for you.

Taking your regimen is really not much different. In time, and probably a relatively short time, you will find it is second nature, like taking the vitamin.

As for the meal, just plan to take your pill with breakfast. That is the most important meal of the day and should simplify the process for you.

Like Wolfie, I was diagnosed years before meds were available. But, I remember the doctor talking to me about starting and my taking a few months to mull it over. (It didn't take much convicing, but it had been 11 years since diagnosis and it was yet another step in my HIV journey.)

Let us know how you are doing and what you decide.

HUGS,

Mark

[eric48]

However, it's not them starting these meds that I will have to take for the rest of my life...

Hi,

First welcome to the forum...

On one hand you're correct and on the other not.

At one point of life, almost everyone (think of the elderly) has to take meds, has to go to hospital for exams, etc. so they will have to do it as well.

Getting adjusted to one's meds and conditions is not so easy, but, hey, you'll get there, like the rest of us.

Will there be a time when we will have to take no meds, or less intrusive meds, or less meds. I am 100% convinced this will happen... and not in 50 or 60 years!

I am 18 months into treatment, and doc and I are starting open discussion about next step, what we would like to start looking at for say year +3-5; meeting with doc is 3 times/year so we are only 10 meeting away from a (potential) change. You'll have much more 'meetings if you are looking for a job or mortgage ;-)

Ever since you where born, you've had to have 3 meals a day; missed few... then what ?

Once you are UD for a little while missing one dose by chance is nothing.

Get yourself organized!

time for labs (3x /year) : 1/2 hour (+ transportation) : total 1.5 h (+ transportation)
time for doc (3x /year) : 1/2 hour (+ transportation) : total 1.5 h (+ transportation)
time for collecting meds : 1/2 hour (3x /year) (across the street, in my case) total 1.5 h
time for transferring meds into my 4x4= 16 7day pill box : 2 hours (3x /year) (my combo is 3 pills (soon to be only 2 - once daily) ( I 've got 16 weekly pill containers at ca $3 each : investment )= $ 48 and one alarm (investment = $0, - I use my mobile)
time for opening eyes, swallowing, turning off the alarm, get back to sleep or work : 3 sec / day (no kidding, I measured it!) that is less than 1 hour /year!

6-12 hours/years + yearly routine check up at hospital

... for the rest of your life...

time wasted on porn: countless, (sorry for that), time wasted on listening to jerks on TV : big time

Time lost if not taking meds (assuming you belong the the people, who need them, apparently not), well, ..., the rest of your life...

I hope his helps you put things in perspective

Good Luck with the treatment

Eric
(time spend on that post : 20 min. / pro bono)

[eric48]

But I am struggling with starting these meds and am hoping maybe some others have gone through these feelings?  Thanks again!

gone through these feelings? : YES
 struggling with starting these meds : NO !

I started on the very day of diagnosis, not the real stuff, of course, you need the genotype results, etc, but with a OTC multivitamin which I used as a placebo to train myself with the schedule.

If you have a hard time with the idea of having this new obligation, try  with a OTC multivitamin. You'll get the habit and then it is merely a change of pill.

The trick worked on me, I hope it can help you.

Eric

[kjo]

I hear you Forrest.  I was very proud to say that although hiv+ I didn't need meds because my body is strong enough to keep the hiv at bay.  But my 'badge of honor' has been taken from me since I now have to go on meds.  When I was first diagnosed my dr said that many go for years without needing meds, so I felt that I was going to be one of them.  6 short years later I need meds.  Our bodies haven't failed us or our sheer will, instead we're given a new way to find the bright side of our situation.  Which is, we're still strong and determined to live the best life we can, every day.  Just like when I found out I was +, it took me some time to grieve.  I think it's ok to do that for the loss of being med free.  One day at a time!  Best to you.

[forrest]

First of all, thank you everyone for your thoughtful replies! I really appreciate it!  It's weird now getting answers from some of you because for many months, I have just observed and now you are replying to ME   

I'll try to answer everyone.

@ Wolfter - actually, I DO analyze everything very carefully in my life. It's a curse and a gift. I think things through carefully (typically) and especially on big decisions.  It's part of my 'wiring' and who I am. I drive myself crazy sometimes but it's me.

@Ann - wow, 11 years and your numbers look like mine huh?  You are right about counseling. It's one of those things that I need to do and haven't done.  It seems like ever since becoming positive, that I don't have the same energy so everything is prioritized on the amount of energy I can spend (or feel like) on something.  Going to counseling (I've done that in the past) takes time to build up a rapport (I have moved since my last counseling so I am starting over with a new person).  I'll get there (soon) and totally agree.

I am definitely not panicking   Although, both ID doctors have said if they were to have HIV, they would have been on the meds already.  They feel this way because of the amount of effort my body has to perform in order to keep those VL's low... so they said it was like my body was fighting this battle 24 hours a day and no time for breaks. Plus, with the HIV comes the inflammation and that concerns them on the heart especially.  I just need to start and thus why I finally posted to help tip me over the edge

@Newt - Matt - you are another one that I've seen post a lot and just weird now having you reply to ME. haha.  Like you said, "Doing new "big" things that look like a long drop, maybe a parachute jump or the like, seems daunting. I think it is perfectly reasonable to feel daunted. "  Yes, this is pretty accurate.  It is a 'big' thing to me and it is daunting.  Not daunting in the sense that I worry about taking the meds... I already take supplements and have taken some other meds for many years.  The routine isn't the issue and like my doctors say, they don't worry about adherence with me. However, with my current meds, I take them either in the morning or at night when I go to bed.  The night ones aren't as spot on the same time every time.  It's just the meal aspect of Complera b/c some nights I am just not hungry.  I don't eat enough in the morning and so that would leave lunch. I think I may start taking at night with dinner but then switch to lunch as I think I am most consistent with lunch. 

Ah, and you were the one that said "Plus, they are a route to a fast, if not instant (but certainly fast), restoration of energy levels, so bye bye fatigue." A friend and me were talking about that comment last night. 

I have two really good friends that have been trying their best to help support me but they are overseas and it can be difficult for them to address the hiv related issues directly.  I have very little support (thus, another reason for counselor).

I kind of addressed some things here that I know others brought up...

@Mecch - Another person I've seen post a lot    Specifics. I even struggle with this Mecch.  Sometimes I don't even understand myself.  I get it... I should be thankful that there is even medicine out there! I should be thankful that I can only take one pill once per day!  And I AM thankful for those things.  That's where I struggle with myself because it's like.. wtf... why are you so hesitant on this?!?! (saying that to myself).  It's a battle.  If I had cancer, I would be on the meds immediately.  So, why am I being so difficult with myself on HIV meds?  I think because my numbers are still decent, but I also worry about the toll it's taking on my body not being under control. 

You stated "On the other hand, if by any chance some one is a naturally anxious type, or over-thinker, or worrier, or ruminate, than "time to think" isn't always an advantage." - I am a naturally more anxious type  I don't get anxious about everything and have worked on that for several years, but I AM a thinker - fo sho!  That is why my friends are trying to get me to think about other things and just getting on the meds will take a weight off my shoulders.  I have other fish to fry right now (have lots of life things going on).  It was a big decision on just what drug to take.  My doctor (I am so thankful I have such a cool doc) has spent hours with me. And knowing me, my issues, my  history, family health issues, etc. finally agreed that Complera would be the best to start out with.

You could be right. Maybe it's the taking it every day thing that I am reminded of hiv... but, I also take a pill every day for cholesterol and also another for triglycerides... those remind me every day that I have those issues.  So, why should this one be any different?  That's where I start to get into a battle with myself.   

Like I stated before, compliance will not be an issue with me.  I also don't think I am in denial. I know I have HIV.  It's on my mind a lot and I can't wait until I get to that point where it's just more of an annoyance or way of living. I am not there yet

And the 'patch' - really?!?!?!  That is awesome!  My friend was talking to me last night and he was like... dude, you may be starting off with a pill now every day, but like some people in the forum posted - that will most likely change in time. I mean, one guy even said they are working on a patch.  That is really cool! I haven't heard or seen anything about this.

@Emeraldize - haha. Thanks for the link.  Believe it or not, I have read through that already. Like my doc said, I have probably studied on this more than most at my juncture of having this   But, it's stuff like that that I find helpful so thank you. And you are right, not panicking

We (doc and I) talked about different combinations but when I had more than one pill, that was more than one prescription and my co-pays are fairly high so it got more expensive and that would add additional 'weight' to all of this so that was another reason he supported a one pill regimen for me right now. 

You said "that she felt my system was likely fighting like hell to keep the numbers as they were." - you are so right with this.  This is basically what my doctors have said.  I have felt very fatigued and my brain feels very foggy a lot of the times (and have had memory issues - most likely due to add and the ruminating over hiv thus not processing a lot of stuff).  But, yeah - the battle thing with your body and how it's best to give your body a break.  THAT is why I am wanting to go on meds now versus continuing to wait.  It's just getting myself to finally ask to call in that prescription and start the process.

@OneTampa - wow. 27 years huh?  Amazing. You have certainly seen huge changes and are probably someone who is looking at me like... wtf... I had to take 30 pills a day and you are whining about taking one pill a day? Good grief.    And that is part of the battle because I can see where you have been to hell and back probably and would be thankful to only have to take one pill.  I do get that.    But you said "With the changing medical landscape, things continue to improve and may become even better down the road as Matt notes. Don't you want to be there when they do?"  - that is a very good point!  To be there when they do.  That, again, is why I WILL take meds (sooner than later). I just have to get over this mental block thingy that I am going through

@csguy1 - I am trying to not stress because I know stress is such a bad thing in itself for the immune system.  That is good to hear that you know someone who just started Complera and is side affect free. I have read that quite a bit.  I have read that with Atripla too... just depends on a persons body, etc. Thanks for your comments!

@Aztecan - wow, another person that was diagnosed prior to meds even being available. My comments to OneTampa would apply to you as well   I'm working my way from the top to bottom so by this time, I have addressed some things you commented on such as taking a vitamin, etc.  Thanks for your comments and support!

@Eric48 - 20 minutes on your post... thanks a lot for taking that time out of your day to reply!! I appreciate it.  I think I am at 30 minutes myself right now    I was busy yesterday and wasn't able to reply but wanted to reply to everyone because I appreciate the time that people take to reply. 

Like some others, I think by this time in my post, I have addressed some things you hit upon.  I actually AM a very organized person.    I already have what I call "granny pill boxes" that I put my meds in and take daily.  I strongly encourage them because I hardly miss a beat by having those on my counter and taking them daily. 

But wow, you didn't struggle at all with taking the meds huh?  I wish I were more like that.  It's not actually the physically taking of the pill... because again, I already take supplements and meds... it's the timing of it... and that I will get over... it's merely taking it... and how I can't miss a day... it's not like my simvistatin where if I miss a day for whatever reason, I'll be okay.  I guess it's the seriousness of the pill and how I need to be perfect with it (or damn near perfect) because I sure as hell don't want to become resistant.  It's more of that, not the act of taking it.  It is nice to see that others have gone through these same feelings though.

That is helping just reading replies, etc.

@kjo - Wow, so you went 6 years and then things just went downhill fast. I do have that sort of worry and don't want to harm my immune system any more.  I was a little worried last time because I had been consistent and my numbers were pretty stable... but then my CD4 number dropped quite a bit the last time. But, that is just the number though (not the %) and I had just come back from a 2 week vacation and also 41 hours of travel from the other side of the world.  So, that alone could have been why my numbers went lower.  Who really knows.  And I like what you say... going through grieving for being hiv med free.  I am losing that.  But like someone else said, I should also be thankful for at least having meds!  Thanks for your comments.

Wow - I bet this is going to be a long post.  But I wanted to address everyone because I appreciate you taking time to reply. Thank you!  It's great to have support from others going through it.  And, I admit, I may go back and forth and at times be confusing.  It get mad at MYSELF for that at times...    Thanks again!

[emeraldize]

Hi Forrest,

Are you available to write thank you notes for holiday and birthday gifts? You are a complete communicator, for sure!

One item " We (doc and I) talked about different combinations but when I had more than one pill, that was more than one prescription and my co-pays are fairly high so it got more expensive and that would add additional 'weight' to all of this so that was another reason he supported a one pill regimen for me right now."

I don't want to intrude, but wish to ask if you are in the US. If you are, at present, I believe all of the pharmaceuctical companies offer the insured co-pay assistance. I just learned about this within the last couple of months. ALL of my co-pays are now covered to the tune of more than $800 in a year's time. AND, lots of people don't know about this including doctors and pharmacists. I'll hunt around for the link for you to read and share with your docs. Perhaps it will give you a chance to reconsider your options before finally deciding to start.

Em

Here you go...http://positivelyaware.com/2011/11_02/copay_chart.shtml
I recall one of the phone numbers was off for one of the companies, but you'll figure that out and you'll note if Complera is your final choice, it's on the list as well. I need to give credit to Billy B, a poster here, who made mention of this in a thread once--I followed up for myself and have since told MANY people -- long-timers who hadn't a clue such relief was available. One guy told me he's going to save roughly $1200 a year.

[OneTampa]

Hi Forrest,

Are you available to write thank you notes for holiday and birthday gifts? You are a complete communicator, for sure!

Co-sign that!

And Forrest, thank you for your thoughtful follow up replies.

Take care of yourself!

[mecch]

I would say, just overall feeling reading your posts, you are over thinking this, going in circles, without actually making very specific lists and ticking off each item. 

List all the reservations and hesitations and tick them off - resolved - or "resolved that I can't resolve this".  And move on.  List all the advantages of starting, and check off each one. 

You seem to be able to put some reasons for the hesitation into words, but not enough to satisfy yourself.  But you don't need to have it "all worked out", my dear. Your standards may be too high.

Do you trust your doctor and his professional wisdom? 

I'm wondering how on earth any ID doc has "hours" to discuss your possible HAART regimens.  From a Swiss perspective, this is very unusual.  I guess you got lucky, or, perhaps, are you exaggerating a bit?

Routine ID appts are about 20 minutes for me. My first doc, they were 15 minutes.  When I serocoverted I didn't get hour long appts, either. Maybe once!  Or longer if there were examinations to do.

Just saying....

You seem to have a good head on your shoulders but you are an over thinker and sometimes its better to let others do some of the thinking and deciding, since you have certainly done your homework, you don't have to do it over and over and over again, "never handing it in" as it were.

[forrest]

Haha Em & OneTampa! 

Em - not overstepping bounds... I am in the US.    Thanks for that list!  I should look at that site more actually.  I have used this site a lot and TheBody over the past many months. 

Mecch - no doubt about it. I am a thinker and probably am over thinking this.  I agree with you and I can drive myself nuts at times.  It's just a bit decision.  And in regards to the doctor... Actually, I am not exaggerating    I think you guys will find with me that I am very straight forward and to not stretch the truth.  My doctor (the last time) came in the room at 1:30p for a 1:15p appt. I was walking out of the clinic at 3:00p because I remember looking at my phone.  He knows I am analytical and was really struggling.  He is actually the director of this clinic on top of it.  He really cares about his patients though and even recommended making the appointment with him to just sit down and talk. 

I am very fortunate in the regard that I live in a town where they can afford to spend time because it's not a huge city and not a ton of hiv patients (compared to larger cities).  I am VERY fortunate to have such an awesome doctor and that he really has spent hours with me.    He gets concerned about the stress that just making the decision makes on my body. 

Through talking with my friend over the weekend and also just all of your responses on here... I am thinking of maybe setting a date.  My one year anniversary of the confirmatory test is April 6th.  April 6th is a Friday this year and they've recommended to me to start on a Friday night so I have the weekend to face anything before going back to work.  So, I am kinda thinking now that I will make April 6th my day to start? 

It really does help to hear from you guys.  I also have a mentor that I talk with and that helps as well.  Thanks again everyone.

[Ann]

April sixth sounds good to me!

When I was newly diagnosed, the thinking had just swung from "hit hard, hit early" to "wait and see". The thinking has now swung back to early treatment, partly because we know more now about what ongoing, untreated infection (with low VL, good CD4s) can do long-term and partly because the meds have improved so much in the past ten years.

I'm on the fence. I can't help but wonder how many long-term non-progressors and elite controllers are being missed through early treatment, and the implications of not having more elite controllers to study and maybe find a cure or vaccine when we finally figure out why there are elite controllers in the first place.

(Just so you know, there are people who can control the virus on their own - they get labelled LTNP and ones who manage to become and remain undetectable without meds get labelled elite controllers.)

And then there's people like me who fall in the middle - long-term SLOW-progressors. If I had it to do all over again during the same years, I wouldn't change anything - but if I were doing it all over again today, with the improved meds, greater knowledge etc, I think I might have gone on meds sooner. In fact, I'm hoping to go on meds - regardless of my numbers - sometime this year. (yeah, "shock-horror" from folks who have known me a long time)

So you over-think things. That's not necessarily a bad thing, particularly when it comes to such a serious matter like how to handle an hiv diagnosis treatment-wise. As I said in my first reply to you, you do have the luxury of taking your time to figure this out. But you've got a plan in place now and all you have to do is stick with it. You've done the thinking, now just get on with it. I wish you luck.

And thank you for coming back with such thoughtful posts. I was starting to think that you weren't going to return! It was worth the wait.

Ann

[mecch]

Wow, so wonderful you have this doc and that atmosphere!  Lucky!

[forrest]

Wow, so wonderful you have this doc and that atmosphere!  Lucky!

I am very thankful that my doctor has (and will) spend time with me and sees that not everyone is the same and everyone processes things differently. 

[forrest]

Thanks for clarifying "long term non progressor" and "elite controller" Ann. Now, I just have to remember    I don't know what the deal is... but man, my memory just is horrible over the past year. 

So... I gotta ask... what is keeping you from going on meds? It seems that your body has been fighting hard for many years now to control the virus and I am sure it would be thankful for some help?  Are you afraid to go on meds? Enjoy the freedom of not being on them?  I know you said you were planning on going on them this year.  I only ask (not to nag or anything) to see if you are in a same place as I am is all. I am curious as to what is going on in your head about it and see if I can draw from that.   

My mentor said when he got his meds, he stared at them for 2 days.  He said it was the most difficult thing to do.  I do have a fear of the side affects or the unknown.  I could be fortunate and not have any side affects - you just never know.  It is a bit scary though.  The meds are very potent and you just never know how your body will react to them.  I hope that Complera ends up working out for me.  Anyway, just curious as to your own thoughts about going on meds. 

I AM thankful for the folks on here. Maybe some day, I will be able to be helpful.  I figure that folks spend time to put thoughtful responses into writing, the least I can do is reply back with some thoughtfulness.    I am sure I will post on here more in other forums as I really do still have quite a few questions.  I actually tried to sign up back in October but it didn't accept for whatever reason and so I finally got the courage to try again now and it accepted (same username, etc. etc.).  Maybe the system was glitchy back then.  But I do have other questions that I hope to ask at some point. 

Thanks again.

[Ann]

So... I gotta ask... what is keeping you from going on meds?

In a nutshell, the NHS, the British treatment guidelines from BHIVA, and the Liverpool Heath Care Trust are what's stopping me. The Trust doesn't want doctors to treat hiv positive patients who have numbers like mine. It's the crappy economy, donchaknow. False economy in my opinion, but it is what it is. My doctor's hands are tied and he'll have to answer to the Trust if I go on meds now. He'll be able to get my treatment approved, but it's a hassle for him and the clinic in general.

I'm not afraid in the least. I've been (psychologically) ready to start meds for a few years now. In fact, when I was first diagnosed, I practically begged my doc to put me on meds - I wanted to feel like I was doing something about my infection. He explained to me that (at the time) they didn't treat until a person's CD4s were in the 200s. He told me there were better meds coming along and I could - and should - wait.

I'm glad I did wait. I would have been put on Sustiva and Combivir and knowing what I know now about Sustiva, I will not take it. Same goes for the AZT in Combivir. Had I started back then, there's no doubt in my mind I would have been really whacked out on the Sustiva, due to my track record with other meds.

(If a med has neurological/psychological side-effects, I usually get them. Champix (an anti-smoking med), for example, can make some people suicidal and it did me. I'm never normally suicidal and no, I didn't know about this possible Champix side-effect until after it started happening. It was pretty frightening.)

I've been asking to go on meds for the past few years now, but they keep saying "lets see what your next results are like". I'm going to see my doc next Tuesday (was supposed to go last Tuesday, but there was fog in Liverpool so my flight was delayed to the point where I missed the appointment and had to reschedule) and I'm going to do my damnedest to finally get a script. I'll probably go for Norvir boosted Reyataz, plus Truvada. A once a day dosing schedule is best for me as I am CRAP at remembering a dose later in the day. Mornings are good though.

I was perfectly happy about not being treated for years. I wasn't afraid of starting, I just didn't feel the need because my numbers were good and I felt fine. However, in the past few years I'm noticing things like having a difficult time getting over ordinary infections and an increasing lack of energy. Plus, I'm not getting any younger and neither is my body. So yes, I do feel it's time to help my body fight these little buggers.

I'll post my numbers history at the end of this post. By the way, I was actually infected in the spring of 1997 (hindsight is a wonderful thing) but I wasn't diagnosed until February 22, 2001. So I had been poz for four years when my first labs were taken. I have no idea what my numbers were like during those four years.

Just so you know, the current BHIVA (British hiv association) guidelines are to start between 350 and 500, preferably closer to 350 and for more than one or two lab results. Very similar to the US guidelines, but not exactly the same.

I AM thankful for the folks on here. Maybe some day, I will be able to be helpful.  I figure that folks spend time to put thoughtful responses into writing, the least I can do is reply back with some thoughtfulness.   

I'm sure you will be helpful - and to be honest, you're being helpful now just by discussing your situation. The question of when to start meds is a very common one that many people grapple with and the more we talk about it, the more others will have these discussions to read and it helps. It really does.

I am sure I will post on here more in other forums as I really do still have quite a few questions.  I actually tried to sign up back in October but it didn't accept for whatever reason and so I finally got the courage to try again now and it accepted (same username, etc. etc.).  Maybe the system was glitchy back then.  But I do have other questions that I hope to ask at some point. 

The only stupid question is one that you don't ask. We learn by asking questions and knowledge is power, so ask as many questions as you need to. That's the primary function of these forums - to empower people with knowledge. Support is an extremely close second.

We recently upgraded the forum software. Before the upgrade, we were inundated with as many as 150 - 200 spam bots in any given day. It was very easy to accidentally delete a legitimate account when dealing with so much bot traffic and that's probably what happened to you. (Sorry! There's a very good chance that I was the guilty party.   ) The new upgrade is better at stopping spam bots during the registration process, so far fewer are turning up in the approvals list now. We're only getting five or six (if that) bots a week, as opposed to hundreds.

2001-02-22 VL 80,700 CD4 490
2001-03-30 VL 21,000 CD4 997 32%
2001-05-29 VL 43,700 CD4 440
2001-07-10 VL 43,700 CD4 350
2001-08-07 VL 25,000 CD4 480
2001-08-21 VL 00,000 CD4 660
2001-10-08 VL 91,100 CD4 470
2001-12-04 VL 96,200 CD4 620

2002-02-04 VL 21,000 CD4 620
2002-04-11 VL 00,000 CD4 530 26% Started hep C treatment
2002-07-10 VL 00,000 CD4 460 27%
2002-09-11 VL 00,000 CD4 530 26%
2002-10-09 VL 30,300 CD4 322 31%

2003-01-08 VL 17,800 CD4 363 23%
2003-04-02 VL 06,940 CD4 410 Ended hep C treatment
2003-07-07 VL 40,700 CD4 474

2004-01-28 VL 29,900 CD4 518 28%
2004-03-?? VL 07,370 CD4 281 23% had shingles
2004-06-01 VL 07,740 CD4 460 27%
2004-08-30 VL 13,000 CD4 568 26%
2004-11-23 VL 11,000 CD4 645 28%

2005-02-15 VL 03,350 CD4 532 27%
2005-03-29 VL 00,000 CD4 715 28%
2005-06-21 VL 06,580 CD4 660 26%
2005-08-02 VL 00,000 CD4 732 28%
2005-10-12 VL 00,000 CD4 320 25% minor op previous day
2005-11-08 VL 10,200 CD4 786 28%

2006-01-31 VL 12,500 CD4 787 32%
2006-04-25 VL 11,800 CD4 628 29%
2006-07-18 VL 18,400 CD4 550 26%
2006-10-17 VL 14,500 CD4 447 26%

2007-01-16 VL 12,600 CD4 567 26%
2007-04-10 VL 07,610 CD4 441 26%
2007-07-03 VL 05,630 CD4 411 25%
2007-09-25 VL 16,700 CD4 525 27%
2007-12-18 VL 12,900 CD4 299 22%

2008-02-05 VL 13,700 CD4 489 19%
2008-04-29 VL 10,700 CD4 433 26%
2008-07-22 VL 10,200 CD4 314 27%
2008-11-04 VL 03,050 CD4 470 29%

2009-01-27 VL 06,700 CD4 459 25%
2009-04-21 VL 07,390 CD4 399 25%
2009-07-21 VL 35,000 CD4 561 32% New VL assay used
2009-11-03 VL 39,900 CD4 576 26%

2010-02-09 VL 00,000 CD4 392 29%
2010-05-18 VL 20,500 CD4 368 26%
2010-10-12 VL 08,000 CD4 576 28%

2011-01-18 VL 27,500 CD4 332 20%
2011-04-20 VL 38,700 CD4 581 28%
2011-07-12 Dunno. Wrote it down somewhere and can't find it now.

Where the VL is listed as 00,000 it wasn't undetectable, it's just that the test wasn't run. I used the zeros to keep the formatting neat and pretty.

You'll notice that the last time I saw my doc and had labs done was last July. (and I can't remember where I wrote the results down, but I remember my CD4s were 400 something. I think.) I was supposed to go in October, but I missed the appointment.

Coincidentally, my BF also missed his appointment earlier that month. He told me that he received a new appointment through the post within a week, so I waited for mine. And waited. And waited. To be honest, I was pretty pissed off about it and coupled with the way they won't put me on meds, well, I just said "fuck it" for a while. Not something I'd ever recommend to anyone else, but hey, do as I say, not as I do. Right?

My boyfriend started nagging me (something he never normally does) about ringing up to book a new appointment, so I finally took notice (Foxtrot Charlie nagging? Must be serious! lol) and rang earlier this month. I've ended up with the same day as his. It's always nice to be able to go over with him, we usually have a nice afternoon together, lunch, shopping etc. He's been stable on meds for over ten years, so he only goes every four months (I go every three - or should) and it's not that often that our appointments coincide. The last time was the day Obama got elected.

A year ago January, I thought I had it nailed when my labs came back - particularly that low percent. Again I got that "let's wait and see what your next labs look like" and of course the damn CD4s popped back up over 500 again, with a decent percentage. I was told "no way" could I go on meds with numbers over 500 and with a healthy percentage.

To be honest, I think I'll probably be refused again, because of the length of time since my last labs. I'll get the "let's see what these results are like first" crap. (Because I fly to Liverpool to see my doc, I don't know my current labs when I see the doc. I either have to wait three months to find out, or I can ring up a couple weeks later. This can be a hassle depending on who you get on the phone, but there's a new nurse specialist who seems to always be answering these days and she's really nice and helpful.)

Long post, but you asked!

[mecch]

  I do have a fear of the side affects or the unknown.  I could be fortunate and not have any side affects - you just never know.  It is a bit scary though.  The meds are very potent and you just never know how your body will react to them.  I hope that Complera ends up working out for me. 

Usually you can find a combination that results in no side effects that you feel in your daily life. 
(Of course, who is to say what will present 10 or 20 years down the road with things like cholesterol or bone density or liver damage, etc etc.  But none of these problems are sure things.)

I do hope that your doctor explained that all combinations work on HIV, there is no chance of failure in that respect.  Anyone who gets medical surveillance and takes the drugs as prescribed gets HIV under control. 

The way I see it, it is medical science - vast networks of researchers and doctors collecting information about big populations, that is being filtered through my doctor and his professional opinion.  So when he (she) says its time for drugs its because the drugs are a lessor risk than an active HIV infection. 

(As Ann explains, that suggestion by a doctor above is made in a vacuum of course, not taking into account other factors that depending on a person and location, come into play.)

Sometimes we come to a fork in a road and both paths we could choose have disadvantages.  Its not like one is clearly candy lane of paradise. 

Anyway, we both know eventually all paths lead to HAART, and HAART (taken correctly) leads to life, so personally I'm not sure the couple of years one "might have gone longer without haart" makes all that much difference in the long run of life.

I'm glad I could let doctors figure such calculations for me, its their area of expertise not mine.   It must be a tricky calculation all the things a doctor like Ann's doctor must take into consideration, including payment!   

And you have already got the medical recommendation to start.  So it is just you who needs to find the determination.

[forrest]

I did ask Ann   Thanks for your thoughtful reply. It's interesting.

What sucks is that you can't just do what you want to because of how your medical system in the UK is set up    But, not sure that it's still not better than here.  I wish we would have health care reform here but that is a whoooooole other topic  

Do you have the option of telling them that your body has been fighting this for many years now and that you would like to go on meds?  period? Or isn't it that simple? You'll have to bear with me as I am not familiar with socialized healthcare. Don't YOU have any say in YOUR health?   

Your long history of VL & CD4 and CD4% is interesting.  It also brings up something else... a question I was going to ask in another forum... but since your numbers show this... I noticed that your VL has gone down different times... yet, your CD4 has also gone down.  Just like mine - my VL has gone down quite a bit since initially finding out... but then, so has my CD4.  I would expect my VL to go up while my CD4 go down.  My doctor explained this to me... but I, unfortunately, didn't grasp it.  Maybe you understand that better than I since you've been watching yours a lot longer not on meds. 

I do know you are supposed to look more at the % versus the number as the number can fluctuate quite a bit.  Yours is interesting though because it goes up and down through the years. 

Thanks for commenting that I am even being helpful now by talking about this.  I feel like I am so draining right now on what little friends that do know about me... and on my mentor... so it's nice to know that maybe someone else who is struggling with this may find benefit by reading this.  The threads that I have learned a lot from on here are the ones where people diary daily when they start meds.  Mostly, they are 'Atripla diaries' but none-the-less, it gives an idea of what it's like going on meds.

You are so right about knowledge being power! My old manager used to tell me that all the time.  She'd tell me not to worry if I didn't know everything, but if I knew the resources to reach out to... that's what was important.  That statement is kinda contradictory I realize... but anyway... I'm kinda tired   

I know what you mean by wanting to just say fuck it.  I have felt that way many times.  I have felt this all very overwhelming many times.  It does get daunting thinking through everything. I feel that you really have to look out for yourself. I can't just put all my health in someone else's hands and not have a play in it. Yes, I trust my doctor, but I also have to look out for myself because no one knows myself as well as I do.  And, they (doctors) are humans as well and have off days... with something as serious as this, I feel like I have a responsibility in all of this as well - thus, why I do my own research, etc. 

Do they have any idea why your numbers do go all over the board?  I am fascinated by them because they go up and down, up and down... OR, is that just what it's like for a long term slow progresser?  It goes up and down... but if you look at it from a 10,000 ft level, the bar is actually going down slowly with peaks and valley's along the way. 

Reread your post again... I AM nervous about the CNS aspect of going on these and will definitely be asking my friends and parents to be checking in on me daily for awhile when I go on because I worry about depression. I've already been quite depressed and down about things and I hope that meds don't make it worse. I think that is one of the main reasons why he is putting me on Complera versus Atripla.  I did ask him about anger issues as I have read quite a few people comment about being angry on Complera. He said that he hasn't experienced that with any of his patients.  But, thinking of what mecch asked one time (or someone)... one of the reasons why I am nervous about going on the meds is the cns reasons. 

Anyway... thanks for your info. Interesting. I don't remember seeing you post your history before in any of the other threads that I have read.   Take care! 

[forrest]

And you have already got the medical recommendation to start.  So it is just you who needs to find the determination.

yup - and that's why I set a date of April 6th. THAT will be the day that I start   

[spacebarsux]

Hey Forrest,

I should have replied sooner but I missed this thread as I don’t come to these sections too much since I, like Ann, am treatment naďve. I’ve been poz 6-7 years, although diagnosed only a year ago.

I haven’t read everybody’s replies so I apologize in advance, if what I say is duplicative (or redundant).

I can totally understand and relate to your ambivalence, concerns, fears regarding starting meds. So you’re definitely not alone! My two main (highly emotional) concerns were (kinda still are): 1. Once I start there is no going back and 2. Why put pills in my body when it seems to be doing its job ok for the time being?

It’s noteworthy that the START clinical study results that are to conclusively determine whether (and how much) there is a net-benefit in commencing ARV therapy with counts above 500, are not yet out. I say this not to dissuade you from beginning treatment but just so you know that there is really no urgency to start treatment as long as your CD4 counts are stable and consistently above 500 (or even the 350-400 region). It is, however, a fair bet that chronic immune activation, inflammation and other issues may be harmful somewhere down the road even with high CD4 counts, though the long term effects of HIV infection with high CD4 counts aren’t proven beyond a shadow of a doubt and many variables come into play. But arguably, the same applies for long term consumption of ARVs (this can vary from person to person and is affected by multifarious factors).

Also, the treatment guidelines nowhere in the world deem counts above 500 as a ‘must treat asap’ scenario. In fact, in EU and Asia, doctors are generally reluctant to put someone on ARVs before CD4s drop to 350.

In the end starting treatment with high counts such as yours is a decision between you and your doctor and one that you should feel comfortable with.

Best.

[Ann]

For a start, I wouldn't trade the NHS for the American system for anything. No way, no how. Not sure if you're aware, but I'm an American ex-pat. I moved here when I was almost 29, so I do have experience in the American health system, including having an emergency op without insurance (took me years to pay that off).

I thank my lucky stars that if I had to end up with something like hiv, that I did so while living in a country that has socialised health care. For all the faults of the NHS, it is still far superior to the broken American system. And I say that from personal experience. Not to mention all the worry I see in these forums from people living in the States.

The clinic I go to is in a teaching hospital. This means that while I have a consultant (a consultant is high up in the doctor food chain) who ultimately oversees my case, I'm often seen by a registrar (like a resident or intern in the States). I don't mind - they have to learn somewhere. But it's useless seeing one of these if you want something outside the guidelines.

I've been avoiding them ever since I wanted to talk treatment with one of them and she didn't know that Isentress (raltegravir) had been approved for use in the UK - and argued with me about it instead of looking it up. She dismissed the subject with "you don't need treatment anyway".

I can insist on seeing my consultant (Professor Khoo, he's great - I call him the Wizard of Poz) and I sometimes do, depending on what's been going on with me. There are two other experienced doctors I'm happy to see when Khoo is away at a conference being brilliant or just having time off. There's one woman doctor I avoid at all costs. But I do have that choice.

You have to understand that if my CD4s indicated the need for treatment, I would definitely be on treatment. They're not going to sit around twiddling their thumbs while I keep getting results in the low 300s or 200s. But that's not where my numbers are at.

You also have to understand that there is no proven benefit (yet) to starting above 500. That's why the guidelines are what they are. And if you look over the past few years, every time they're just about to say "ok, here's your script", my CD4 pops back up over 500. So they say "you're outside the guidelines". And I am, Mary, I am. There's no denying it.

There are no points in the guidelines that allow for length of time poz (such as "treat after seven years, regardless of numbers"). Maybe there should be. Maybe there will be as we learn more.

Another thing - my consultant is an hiv pharmacologist. He's one of the heads behind the hivinteractions.org website I often point people to. He knows his stuff when it comes to the meds (as well as the virus itself) and I do trust him. He's been in the field for nearly 30 years and has published scores of research papers concerning the meds. I know that if he thought I was in any real danger, I'd be on treatment pronto.

~gack~ I sound like I'm talking myself out of it, don't I. And that's what happens when I go to the clinic. I go in determined to demand treatment, but end up getting reasoned out of it again. Hopefully I'll be able to stick to my guns next week. The woman I'll be seeing just might write me that script, particularly when I tell her what happened to me in December. (I was sick for weeks.) I have a feeling that out of the three doctors I trust the most, she's probably the one who would relent the fastest. I requested her for a reason. See, there is method to my madness - sometimes.

You ask "don't you have any say in your health" - and yes, I do. I have plenty of say. But when treatment isn't recommended, it isn't recommended. Under the American system I can have pretty much anything I want - if I can pay for it. But that doesn't necessarily mean what I want is what I need. For example, in the Am I forum we see people paying for unnecessary PCR tests all the time. They wouldn't get that in the UK on the NHS unless there was a real need, and rightly so. 

I know I could go totally postal on their asses next week and get that coveted script. BUT. That would get me labelled as a difficult patient and I don't need that particular mill-stone around my neck. I'll just have to keep working on countering their reasoned arguments with reasoned arguments of my own and hope they finally see it my way.

Hell, for all I know maybe my numbers have finally taken a proper dive since last July and this blahblahblah is all academic anyway because they'll call me back in two weeks saying "get your ass over here on the next flight!" ~shrugh~

I have no idea why my numbers do what they do. I don't think anyone really knows. Years ago I used to exhaust google looking for the answer, but I never found anything that was satisfactory. I gave up looking after a while and decided - "it just is, ok?"

Strictly speaking, my numbers aren't "up and down and up and down and all over the place" - they're stable. Aside from the odd time, my numbers don't really vary all that much. It takes a while to wrap your head around the fact that a VL of 10,000 (for example) isn't really all that different to a VL of 40,000. It's to do with a mathematical thingy called logs, but don't bother asking me about mathematical thingies. I'm clueless. (Matt aka Newt can explain it better than I) And fluctuations of as much as 100, give or take, in CD4s is completely normal during the course of a single day.

Don't be worrying too much about side-effects. You may not have any and chances are very good that you won't. I will be staying away from Sustiva because of my history of not playing well with meds that are known for possible psychological side-effects. Even then there's a chance I'd be ok, but it's a chance I've elected not to take. (see, that's one of the ways I do have control - they will not force any one combo down my throat. I can choose.)

Unless you have a history of bad reactions to meds or have a history of serious depression or other mental health issues, you'll more likely than not do just fine. Side-effects is one area that you DO NOT want to over-think. Your mind is a powerful thing and you can actually produce symptoms with the power of your own mind. So go easy, yeah?

[LiveWithIt]

Has anyone else experienced this?  How did you overcome it?  I appreciate the feedback and really want to thank everyone that posts on here because it has totally helped me over the months learning about side affects, etc. etc. This is a great site! 

Don't be apprehensive and try not to stress out about it.  I'm on the same meds for about 5 years now.  I take them once a day at night.  I don't feel any side effects.  I don't worry about any toxicity issues, that for the doctor to let me know from my blood tests, to me taking meds is like taking a vitamin. 

If one doesn't work, you can always take another.  I've probably taken 12 different ones and only got an allergic reaction to one.   I don't listen exactly to what they tell me, sometimes I take it with food, sometimes I don't, I don't think it matters specifically with what I'm on.  Sometimes I go out and have 2 or 3 drinks and take my meds when I get home.   Sometimes I don't take them at midnight (my normal time)  because I come home late.  I try never to miss taking them, but maybe once  a year I will forget to take them, or forget if I've taken them, but I came up with a system and put a 7 day supply of all the meds in  a bottle and every Tuesday night I  know to refill it.  I don't buy  the story that you become resistant to a medication if you stop taking it.  On paper the tests have told me that I am, but I will take something that they say I am resistant to and it will work for me. 

[mecch]

I don't buy  the story that you become resistant to a medication if you stop taking it.  On paper the tests have told me that I am, but I will take something that they say I am resistant to and it will work for me.

It's not a "story" and too bad you don't believe it.  It's well known that if you stop certain HAART drugs the wrong way, resistance is a possibility and has affected real people.

[LiveWithIt]

It's not a "story" and too bad you don't believe it.  It's well known that if you stop certain HAART drugs the wrong way, resistance is a possibility and has affected real people.

Possible yes, certain no.  Has affected some, yes, has not affected others, yes again.    I think people create their own anti placebo effect when they are told something won't work for them, and sometimes a medication that is said not to work on you will work in combination with others.     

[mecch]

This is a tangent and I don't see how it relates to the OP's concerns.
However, I was noting that you are providing misinformation.

Stop sustiva incorrectly risks resistance. For example. The risk is a fact. Nothing to do with your mumble jumble.

Not everyone who stops incorrectly develops resistance. Some do. No psychological mumbo jumbo. The virus has no mumbo jumbo.  The virus mutates while there is non suppression but still Sustiva in the system.

[leatherman]

I don't listen exactly to what they tell me, sometimes I take it with food, sometimes I don't, I don't think it matters specifically with what I'm on. 

medications can be recommended "take with food" because studies have shown that food (a certain amount of calories and/or fat - refer to the package insert for the exact specifications) can assist (or sometimes hinder) in the absorption of the medication. Not eating with a medication that "requires" food means that your body will not absorb the proper amount intended for that dosage. In a worse case scenario, depedning on the medication's metabolic requirements and a person's strain of HIV, this could lead to resistance.

sometimes a medication that is said not to work on you will work in combination with others.     

if you're supposedly seeing some medication work for you that a test has proven you have developed resistance to, then you are simply seeing the outcome of the work of the other drugs. "Correlation does not imply causation"

On paper the tests have told me that I am, but I will take something that they say I am resistant to and it will work for me.

I guess it depends on what you mean about "on paper" and "the tests". genotype and phenotype tests literally test your blood (and the HIV in it) against the meds and if any resistance is noted then those meds simply do NOT work for you. That's just how science works.

[forrest]

Thanksspacebarsuxappreciateit!!   

"I can totally understand and relate to your ambivalence, concerns, fears regarding starting meds. So you’re definitely not alone! My two main (highly emotional) concerns were (kinda still are): 1. Once I start there is no going back and 2. Why put pills in my body when it seems to be doing its job ok for the time being?"

I think you summed me up good here.  That's certainly how I feel.  I decided to set a date of April 6th to start, however, I am going to set up an appointment within the next couple of weeks to check my levels again and then make a final determination on April 6th.  The thing that has played in my mind a lot is the "once I start, there is no going back." 

In regards to LiveWithIt and Mecch conversation about resistance... my doctor definitely says there is proof for the virus being resistant.  And you can most definitely develop it.  So, while I don't want to argue, I believe there is a lot of science that backs up resistance and plus, I'd like to error on the side that will most benefit me and that is to take the meds as prescribed, on time, and not miss a dose. I simply don't want to play around with my life on that topic.

@Ann - wow, you must have fast fingers!!    I do too actually.  I can just type away from the top of my head and bam, before I know it, I have written a ton. 

It is sad how people go bankrupt over health issues here.  I worry about that now.  I mean, anyone should really - as you never know.  I am definitely a supporter of socialized healthcare, it just for some reason, seems to be so negatively looked upon here and i don't get it.  We have other things that are socialized and I believe (don't quote me on this) is that all developed countries in the world have socialized healthcare to some degree except the US.  I know this isn't about socialized healthcare so will stop there. I just wanted to comment 

It sounds like you have some great care and some great resources! That is awesome.  I have to ask though... so, you have to fly every time you go to a doctor appt?  I can't imagine that, but it's just all what we get used to huh?  At least during the one next week you can go with your hubby and make a day of it! 

I do worry a bit about the mental part of it. I do have a history of depression and anxiety so will need to watch that very carefully.  I'll ask my friends to be a bit on alert for the start and to remain cognizant of my mental state for awhile.  Actually, I only have 2 friends that know, parents, and a mentor that I really talk to about this so will be limited.  I am assuming that if I am really down, that I'll recognize it and that it won't be any different on meds than when I am not on them and get really down.  I think that is a reason why my doc said he 'cautiously nods his head to Complera" - he's looking at the big picture and many things about me - not just the depression but if I were to ask him, he'd probably say that is a concern, but all the other positives outweigh.

And Hi Leatherman. I have seen you on a lot of other threads and often have helpful things to say! 

Thanks again everyone.

[Ann]

 I have to ask though... so, you have to fly every time you go to a doctor appt?

I can walk to my GP's office in less than three minutes from my front door. He takes care of anything not directly related to hiv and sometimes liaises with my hiv doc to make sure he prescribes the best med(s) for my needs.

But yes, my hiv doc is in Liverpool. I live in the Isle of Man (aka The Rock). It's an island in the middle of the Irish Sea, so I can fly, swim, or take the ferry. Swimming and the ferry take too long, so flying it is.

I could go to a clinic here on the Rock, but they do not have a dedicated hiv or ID doctor resident on the island. They fly an hiv doc over from Manchester about once a month, but I do not trust him with my hiv care and he is not very well respected in British hiv circles.

The Isle of Man is famous for the TT (Tourist Trophy) Motorcycle Road Races, Mark Cavendish, and tailess cats. And me.

[eric48]

1. Once I start there is no going back ...

While this statement is backed by solid clinical studies, it may have to be revisited one day.

Statistical studies may hide some effects that only apply to a smaller section of the population.

See for example, people who got the Delta 32 mutation from both parents have a solid protection against the virus. people who got the Delta 32 mutation from one parent only a a good chance to have a 'mild' protection. Those people are not many and their specifics are lost in statistical analysis...

Some doctors are considering that it would be worthwhile to know if a time limited , scheduled, treatment would allow those people to restore the immune system well enough and run another 5-10 years without meds and so on...

The study that backs up this 'science' was not stratified by delta32 genotyping (as far as  can remember). Which is why, someone who has significant CD4's in blood account and significant $ in bank account should be allowed to know (or learn) about their delta32 genostatus before  making decision in hurry.

Unfortunately not current practice where I live, is, I , think, not 'forbidden' but not 'commercially' available. In other words practically not feasible...

Now that  have done my research about thing, there are a number of things that I would have wanted tested before going on meds !

The only 'risk' factor that I had (which Ann did not have when she started her history) is ... age.
And that test is free...

Eric

[LiveWithIt]

Mark my words.  In 100 years they will learn that the best way to cope with and cure  this disease is to take at least one medication which tests show you have developed a resistance to.   I am Hivstradamus.   

just kiddin.   

[leatherman]

to take at least one medication which tests show you have developed a resistance to.

once again, the science is that if your HIV has become resistant to a certain med, then that med is no better than a placebo (perhaps worse as it could be like a placebo with negative side effects) because that med will do absolutely nothing to keep your HIV from replicating.

see this link http://www.aidsetc.org/aidsetc?page=cg-210_resistance_testing for some information about genotype and phenotype testing

unless you can provide some sort of study or report that repudiates the science behind phenotype testing, then you need to realize that what you're saying about the effectiveness of a drug, that you have been proven to have resistance to, is just hogwash and makes you sound silly.

and if you mean that you were just kidding, then I need to say that I don't find spreading false medical information funny at all. people come to this site looking for real scientific answers so that they can have the best health care and best health possible. Joking about taking meds that would be ineffective, and perhaps being exposed to nausea and other side effects, isn't much of a joking matter.

[LiveWithIt]

once again, the science is ,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,

What part of just kidding don't you get? 

[Ann]

What part of just kidding don't you get? 

and if you mean that you were just kidding, then I need to say that I don't find spreading false medical information funny at all. people come to this site looking for real scientific answers so that they can have the best health care and best health possible. Joking about taking meds that would be ineffective, and perhaps being exposed to nausea and other side effects, isn't much of a joking matter.

I don't particularly think it's funny either when someone posts incorrect information about something as serious as hiv drug resistance - and then claims to be "just kidding". All it does is confuse people who are still struggling to learn about and understand all the important and nuanced information we need to know in order to live well with this virus. Why make it harder for people?

If you want to joke about stuff, there's a whole forum for that - Off Topic. Got it? Good. BTW, I'm not "just kidding".

And please do not hijack this thread further. I really don't care to read more excuses or protestation or to be told to "lighten up". The Treatment forum is a serious forum.

Thank you for your cooperation.



That aidsetc.org website looks to be a really good one, so thanks for that link Mike. It's a site I hadn't come across before.

[spacebarsux]

Thanksspacebarsuxappreciateit!!   
 

You're welcome. 

Spacebarisfortheordinary!

[eric48]

take at least one medication which tests show you have developed a resistance to.

take at least one medication which tests show you have developed a resistance to.

Truly, this section tends to be serious about meds and understanding them.

While Some of the answers here do reflect current , sound, proven knowledge, sometimes things get over simplified and do not show that some doors are opening in treatment simplification and better, easier to take treatments.

One way to help the OP cope with the mental stress of starting meds is to put some light on the fact that treatment decisions, and treatments themselves, in 2020 will not be the same as they are in 2012, which are way different of what things where in 2000, etc.

I am not saying it NOT a lifetime committment. I am saying it is considered a lifetime commitment by 2012 standards

Now while the joke by LiveWithIt may not be of the taste of everyone, there is indeed some insight in it. There is a report (which I kind find the reference for, if needed,  am sure  read that, but I think this is not the topic here), that show that there is some benefit for some people with very complex resistance profile in adding EVEN some of the meds they are 'resistant' to to their regimen. Explaining why, seems to be something that the authors are still working on. One should be carefull when throwing 'science' at people's face

So back to the OP, one way of helping with the mental stress of starting meds, is to understand that, of the many strategies that are currently being explored to eradicate the virus, one will at some point be successfull. Hopefully, these strategies will ultimately be of help to every Hiver. Yet, not every one will benefit at first. People who are enrolling for current, early, eradication trials (such as myself) are required to be UD for an extended period of time, and, in some cases, they will only select those who are VL < 1. Which is something that is observed on a good number of people who have been UD for, say, 3 three years at least.

One way of handling the anxiety is to make the OP realize that treatment is a journey and
it is a journey which route is uncharted but also includes a possible sterilizing or partial cure. Starting meds in 2012 is not the same as starting meds in 2000. Starting meds in 2000 was risky business, very much less so in 2012; Starting meds in 2012 is also preparing oneself to what will be available in 2020.

Hope this helps

Eric     

[leatherman]

(which I kind find the reference for, if needed,  am sure  read that

yes. a link, please. thanks

Now while the joke by LiveWithIt may not be of the taste of everyone, there is indeed some insight in it. There is a report (which I kind find the reference for, if needed,  am sure  read that, but I think this is not the topic here), that show that there is some benefit for some people with very complex resistance profile in adding EVEN some of the meds they are 'resistant' to to their regimen. Explaining why, seems to be something that the authors are still working on. One should be carefull when throwing 'science' at people's face

So back to the OP,

and speaking of the OP, your "reference" seeming to supporting LWI's opinion/joke of taking a med that the patient has resistance to really has nothing to do with our treatment-naive OP. The science for the OP is to have a genotype test done and not take any med to which their version of HIV would have resistance to; but to go with another one of the many regimens out there.

Starting meds in 2000 was risky business, very much less so in 2012

now that all depends on your point of view. First off, starting meds any year is better than dying of AIDS. and then starting meds in 2000 wasn't anything like risky business as by then HAART had been in effect for about 5 years, and HAART was thousands of times less risky than starting meds in 1990 when there was just AZT monotherapy. Now in 2012 starting meds is even easier and it will/should be even easier still come 2020.

Starting meds in 2012 is also preparing oneself to what will be available in 2020.   

Really no one knows what the future will hold, so today we can only make our health plans based on what is available in the here and now. Actually starting meds in 2012 (if your health warrants it) has nothing to do with preparing for 2020; but simply staying healthy - and alive - until 2020.

[forrest]

@Ann - oh wow... Just looked it up on Google Maps... that must be pretty cool living there?  Now... it totally makes sense why you fly!!!     Looks like you're closer to Belfast than Liverpool... haha.  I've been to Ireland twice but haven't been to England.

Thanks Leatherman for the link on genotype/phenotype.  I bookmarked that one. 

I'm not sure how to address some of the others... I think the 'old timers' have addressed things well.  I am all about humor, don't get me wrong... but I would agree about not joking around about something like this.  I don't want to offend anyone or piss anyone off... I was just looking for honest input from folks about starting meds when I posted this.    And the response have been helpful. 

I wonder if there is anyone else out there that is in my shoes... as in, hasn't started meds yet and going through the same? 

I have made up my mind that I am going to get new tests done in the next week or so to see where I am at.  The last time I got them done (Dec 6th), I had been traveling for 41 hours prior so I was tired, hadn't slept much, came from the the other side of the world, etc. and I would venture to guess that had a play in why things dropped so much.  So, I'd like to see where I am at now again and see if I am back up above 500 - although, with that said, I should be looking at the percents, not the numbers... 

I actually really liked Eric48's response below too.  I think it helps to add perspective.  The reality is, it seems like most people go through different treatments on this 'journey' and that while I may start on Complera, who knows what I will end up on.  I may be on it for several years, or I may not be.  And you are right Eric - it really is mental stress!  That is actually something my doc has mentioned to me every time I have seen him. He worries or gets concerned about the amount of stress this is causing me (or has caused me) and that is actually one of the reasons (of many) he feels why it would be beneficial for me to start.  A big stress has been lifted and that is determining which regimen to go with and that was Complera.  Now, it's just the starting part. 

I would agree, too, that it will be a journey.  Not one by choice. But it really is kind of scary not knowing your course per se.  It is unknown and I think that is why it's difficult to start.  But then again, on the other hand, I'll never know until I do start.  There is an HIV book I got when I first found out (forgot the name - very popular) but he talked about all of these things and how after starting, etc. that the HIV goes from the forefront to more of a nuisance in the background.  It's just in the forefront for me now but some day, it will be more in the background.  All of this... the thinking, the talking about it on here, and reading other people's responses, how they have dealt with it, others experiences... it's all just part of the processing of it all.  I really am thankful for the folks on here!!    I am a thinker and it helps to process through it all by reading others thoughts, etc. 

I do have a question though... what does OP stand for?     Oh... does it stand for "Original Post?"

After all this discussion, I am certainly wondering about my numbers now... will see.  I have to ask... because it does run around in the back of my head... but anyone know anything about the Quad pill? Is there any articles on it as in where it is at in development, any estimation on when it will be out, how people are doing on it in clinical trials, how it compares to Atripla & Complera, etc.  Just curious.

I hope no one feels offended if I don't answer specifically everyone's post.  Forums like this are totally new for me so I don't know what the standard protocol is... or what the proper thing to do is in regards to responses.  Trust me though... I have certainly read everyones - more than once 

Thanks again!

[wolfter]

OP - Original Poster

Wolfie

[spacebarsux]

I wonder if there is anyone else out there that is in my shoes... as in, hasn't started meds yet and going through the same? 
 

Forrest,

Like I stated before, I’m pretty much like you in this respect. And there are quite a few of us with the same dilemma! I go back and forth about beginning therapy too-  sometimes within the same day or week.

But here are some cogent reasons to wait at this point:

1. You really can afford to wait at this point. There is no urgency. I firmly believe that it’s important to get mentally prepared before commencing a lifetime of therapy (as it is presently)- and we HAVE THAT CHOICE right now. Many others (and lots on this forum) weren’t as lucky. And why do I think it’s important to mentally come to grips with popping these pills? - Because if one is not mentally prepared you could end up with poor adherence which could lead to resistance.  (I know some members don’t agree with me on this but this is what I think anyway).

2. Guidelines, the world over, DO NOT recommend starting therapy with CD4 counts > 500. I think it is optional in the US- but that is based more from a Public Health Policy Perspective (because an undetectable VL also reduces transmission by as much as 96%) than individual health perspective.

3. The START clinical trial study results that are to conclusively determine if there is a ‘net-benefit’ in starting meds with CD4> 500 have not been released. In the absence of this scientific 'evidence', any suggestion that starting meds at this stage will benefit you in the long-run is based not on evidence, but on ‘expert opinion’ (There is a clear difference).

That said, it really is your health and your body and you should do what you’re comfortable with (under the guidance of your doctor of course).

Best

[Ann]

@Ann - oh wow... Just looked it up on Google Maps... that must be pretty cool living there?  Now... it totally makes sense why you fly!!!     Looks like you're closer to Belfast than Liverpool... haha.  I've been to Ireland twice but haven't been to England.

I'm not sure if Belfast is closer or not, but there are far fewer flights and the ferry takes even longer as all ferry traffic originates out of Douglas (the capitol), on the east coast. I don't know of any medical patients who travel to Belfast for their care, but lots go to Liverpool or Manchester. (There were 58 "patient transfer" passengers the day our flight was delayed and only two of us were hiv patients.) Hiv isn't the only speciality that we don't have resident specialists for - it's because of the small population size. The common saying is... "seventy-thousand alcoholics clinging to a rock in the middle of the Irish Sea".

I have made up my mind that I am going to get new tests done in the next week or so to see where I am at.  The last time I got them done (Dec 6th), I had been traveling for 41 hours prior so I was tired, hadn't slept much, came from the the other side of the world, etc. and I would venture to guess that had a play in why things dropped so much.  So, I'd like to see where I am at now again and see if I am back up above 500 - although, with that said, I should be looking at the percents, not the numbers... 

Yes, all that travel and lack of sleep could very well have had a transient effect on your numbers. Lots of things can and that's one of the reasons you should never get too excited - good or bad - by one single set of lab results. If you look at my number history, you'll see one result that was taken while I was still recovering from a stress-induced (work related) bout of shingles. The CD4 was low, but it rebounded by the next time I had labs done.

The numbers are important too, but the percentage tends to be more stable.

but anyone know anything about the Quad pill? Is there any articles on it as in where it is at in development, any estimation on when it will be out, how people are doing on it in clinical trials, how it compares to Atripla & Complera, etc.  Just curious.

Have you explored the other sections of this website? There's a grey bar across the top of any forum page with tabs (some containing drop-down lists) with names such as Home, About, Treatment, Prevention, etc. In them you will find links to the Lessons and Drugs pages, amongst others. Take some time and check them out.

There is also a News section. There is a search box at the top of this page so you can find older articles that no longer appear on the main page. Anytime there are changes to any of the drugs (such as being approved for use or if they're still in trials) it will be reflected almost immediately in the Drugs pages. You can also sign up for newsletters - two are published, one from AIDSmeds.com and one from POZ.com.

I do have a question though... what does OP stand for?     Oh... does it stand for "Original Post?"

Yep, it can stand for either Original Post or Original Poster, depending on the context.

Ann

[eric48]

http://www.europeanaidsclinicalsociety.org/images/stories/EACS-Pdf/eacsguidelines-v6_english.pdf

has a nice section on 'patients readiness' . They really put is as first thing to assess (unless patient is in critical condition...I suppose)

Back the the meds choice. Your not yet there, but there are 2 strategies:

- go for the 'safest' first, if you need a switch, then plan B is the one you consider that you ***may*** be at risk (although no risk factors have been identified) (stress increase)
OR
- go for the 'easiest', the one you think might be not the safest choice, the good news is that on Atripla, 80% of patients are doing fine and happy with it, so, you would not have to worry about food . Then your plan B is to go with Complera which you seem to think is safest for you. then there is no stress increase if you need to switch, on the other hand, you'll feel relieved...

Or 2 dishes: which one you are having first, the one you like most , or you keep that one for dessert. Me I start with the things I like less (veggies...); If I am full, then I can keep the delicacies for another time;

How to lower the anxiety. Let me get back to this one again (that is THE OP).

First in order to lower YOUR anxiety, you apparently decided to share (disclose) to your loved ones. Fine... That works for you... But what about them ? What about their anxiety ? don't you think it would help with your anxiety if thinking about the relief it will be for your loved ones ?

Not everyone has a choice about meds and disclosure. I happen to have the luxury of choice, and so do you (apparently). On top of that you even have he choice of timing !

You were asking about other people experience. Everyone is different.

In the middle of a slope you decide to go the easy way (walk down) or the more difficult one (walk up). I personally, went for :
A - non disclosure
B - a combo that is considered at the same time risky at initiation but very nice if you pass the initial period without problem (people who failed on it loathe that combo, since the initial SE are ... hum... well... tough..., but those who've passed love it !)

Non disclosure + Viramune + Kivexa: YES , I know about anxiety at initiation!

But on long run, I get the benefits of it: privacy, preserved self esteem, once daily, no food obligation, no cholesterol worries, etc...

There was an interesting language used in the previous US guidelines (not in the newest) about meds choice. among the many options A, B, C, D. there was one comment about A and B (but not about C and D and others). It said A saves the option of using B in case A fails, B saves the option of using A in case B fails;

In other words, in making decisions in a situation that (understandably) raises anxiety, it is a good thing to reflect on: what is my plan B ?

If you go with complera and (for some reason) need a change then your plan B is dreaded Atripla.
On the other hand if you go Atripla first (which has a high record of success, BTW), then your plan B is complera.

Knowing that your plan B is 'softer' that your plan A may be one way of dealing with meds initiation anxiety.

Of course this is one patient (me...) way of coping with the anxiety of starting meds. May be not yours, may be not of others, but, at least, personal opinion and experience about this matter is what you were originally asking for.
 
Hope this helps

Eric

[forrest]

Eric & Ann - I apologize. I never said thank you for your thoughtful replies. Appreciate it!  I hadn't checked out some of those other areas so I will need to.  There is a LOT on this site. I have looked through some other threads as well.

Eric - I think I feel most comfortable with Complera. I do like that you provided a different thought process and did a nice job at thinking outside the box so I appreciate that. 

I actually gave blood today and made appt for March 6th (first available) but I am hoping I can get my main numbers prior to that (don't see why that would be an issue). So, will see what these numbers & percents are and then determine on whether or not to start on April 6th. I think that is my gameplan. 

Something I haven't noted that is weighing into all of this is the  need to change jobs and if I change jobs, I will be moving to a different state so all of that plays a role into starting.  If my numbers are okay, I may just wait until I get moved (but that could be this summer/fall) so may or may not be able to wait.  It all really comes down to the numbers. I know my doctor wants me to start and has wanted me to start since August.  However, if my numbers come back above 500 and VL still low, then as someone has stated, it doesn't seem to make sense to start if over 500 CD4.  Will see. I'll keep posted and let you know when I get the results back. 

Thanks again.

[leatherman]

Something I haven't noted that is weighing into all of this is the  need to change jobs and if I change jobs, I will be moving to a different state so all of that plays a role into starting.

a few words of caution about a move.

While most drug manufacturer websites have co-pay assistance and patient assistance programs to help cover the cost of either co-pays of the cost of the medicine itself, some people earn only enough and are eligible for their state's ADAP to help purchase medications or cover insurance premiums. If you fit in that category of being eligible for ADAP, make sure to NOT move into a state with an ADAP waiting list!! If you move into an area with a waiting list for ADAP and you need or you are eligible for ADAP, then you'll be screwed. For more information about states with ADAP wisting lists and state eligiblity requirements (certain meds or certain levels of meeting FPL (federal poverty level) visit http://nastad.org

Also make sure to move into an area with a clinic or doctor that can treat HIV. Do your research first or you may find yourself having to drive 100s of miles to get proper HIV care. Although this usually isn't a problem if you move into a larger city, traveling to get appropriate care is almost always an issue when moving to a more rural area. That's not to say though that rural area are ruled out. Some areas will surprise you and have wonderful health care facilities.

[forrest]

Thanks Leatherman!  Appreciate the input.

So, I have a thought going around in my head today... I have felt this before... but it plays into this decision.  So, once again tonight, I am exhausted. It's typical. Over the past year, it seems like outside of work, I am just wiped. I will admit that my job is pretty stressful (more than I let myself think).  However, I've been in the same role for 5 years.  I am just wiped... and I can't help to think... my body is working it's ass off to keep my viral load as low as it is.  It's working really hard.  And like my doc said, when a person with untreated hiv goes to sleep, their body just continues to fight and fight during the night where a hiv negative person sleeps and their body repairs itself.  Now, an hiv+ person's does repair over night but it's also fighting another battle (HIV) that is just non stop. 

By going on medicine, it helps your body out so it's not having to do that battle.  So, on a day like today, I feel like even if my numbers come back and let's say they are 500VL... that I think I would feel better if I were on meds because my body wouldn't be fighting so hard.

See where I am coming from? These are valid thoughts aren't they?  I really do lack energy most of the time that is for sure.  And, I have other rather large things going on my life at the same time, which doesn't help matters either.  I am anxious to see my latest numbers though, nonetheless.

Anyway, just a thought...

[forrest]

Well... ahem... Got my labs back today... and they look pretty good.  So, now I am conflicted more on whether or not to start.     I haven't done much research on the... is it called "Start Study" - do they know when that is supposed to be done?  I see my doc on March 6th, but I know he's going to say start.  Although, folks have posted that there is no research that shows starting when you VL is above 500 is beneficial. I have updated my profile to reflect the latest. 

I know my body is taking a toll to keep those numbers I would assume... and my dad died of metabolic syndrome (high cholesterol, high triglycerides, diabetic, hypertension, etc. etc. etc.)  With all that said, I have always taken MUCH better care of my body.  I have been watching closely what I eat since basically 1994, I don't smoke, I rarely drink, etc. etc. BUT, I do have that in the family and my high chol & TG are hereditary.  With that said, the thought of my heart being inflamed due to the HIV is worrisome and going on meds would be helpful for that. However, I can't get out of my head that there is no proof that going on when above 500 is beneficial - correct?  Also, by not starting meds, it gives me freedom with my job - in that fact that I am not tied to it and should I need to leave, it makes it easier not having the whole med thing on my shoulder (when finding new job and moving). 

Anyway.... while the numbers are good news, I am a bit perplexed. I WAS totally leaning at starting on April 6th, but now that I up in the air.

I am going to post in another forum topic to understand the numbers.  Didn't feel that was appropriate to this thread.

Thanks again!

[mecch]

Untreated HIV causes an inflamed heart?

I dont think people start HAART in relation to other health factors and certainly not risks. Do you have any of this now:
(high cholesterol, high triglycerides, diabetic, hypertension, etc. etc. etc.)

If not, why is this in related to starting or not.

Ask you DOCTOR his/her rationale for starting now.  You seem to think you have heard no PROOF of benefit, and so why start?  So ask him that question.

There is no proof of a lot of things because there isn't aways a system and money and time and measurement to get the proof.  Doesn't mean its a bad idea.

I think you are smart, however, to think about job and insurance considerations.   

[forrest]

Thanks Mecch. My doc explained to me that HIV causes inflammation throughout your body.  Thus, would cause inflammation to heart.. and anything else in the body.  I know from day 1, he suggested that I take baby aspirin to help with inflammation. 

I do have high cholesterol (take meds) and also high TG (take a lot of fish oil and also watch fat/carb intake).  Cholesterol is in check due to meds, however, TG vary and sometimes are in check and other times are not.  I do not have diabetes, hypertension, high blood pressure or anything (thankfully). 

I do feel very fatigued and have while I have always complained of fatigue throughout my life, I certainly can tell I am more fatigued over the past year or two. I am pretty sure I was infected in April 2010.  So, I went one year until being confirmed that I was HIV+ and now it's been almost another year since finding out.  Thus, it's been 2 years (almost) now.  I think my doc feels that I would feel better overall (I am very sensitive to changes in my body...always have been) by going on meds - especially with the fatigue. However, he doesn't know that for sure. 

I'm not actually seeing the one that has spent so much time with me on March 6th. I am seeing a fellow instead (I have met him before, I didn't wait to see my reg doc because this one is just to go over labs).  I know that this one I am seeing said that if he were infected, he would go on meds immediately regardless of numbers.  He has recommended me to go on them in the past so would expect him to feel that way when I see him on the 6th as well.

[leatherman]

I see my doc on March 6th, but I know he's going to say start.

2011-MAR-26:  Tested Positive
2011-APR-06:  VL: 48,653 | CD4: 603 | 32.0%
2011-MAY-23:  VL: 64,324 | CD4: 577 | 36.0%
2011-AUG-02:  VL: 18,319 | CD4: 574 | 36.3%
2011-DEC-06:  VL: 10,375 | CD4: 480 | 30.1%
2012-FEB-23:  VL:   9,674 | CD4: 570 | 33.6%

with numbers like that your doctor won't be saying that it's time to start meds. He might, however, suggest that you think about an early start; but you have not reached the recommended guidelines yet for "needing" to start meds.

Also, by not starting meds, it gives me freedom with my job - in that fact that I am not tied to it and should I need to leave, it makes it easier not having the whole med thing on my shoulder (when finding new job and moving). 

most people, these days, after a short period (2ish weeks) of adjusting to their meds (lowering the viral load and getting adjusted to these chemicals) just continue on with their jobs and continue on with their "normal" lives. Unless you need to leave your job to have insurance coverage or something like that, meds shouldn't affect your employment.

[forrest]

Thanks Leatherman!  Yeah, in regards to job... What i meant is, if I were on meds right now, I would certainly be "tied" to my current employment and if something were to happen (leave) I would have to find means in which to pay for meds. But, by not being on meds yet, it takes a certain weight off my shoulder since work is a bit turbulent right now.  That's what I meant.  Yeah, when I start, I planned on starting on Friday night and then going to work on Monday.

I have been looking for info on START and have found it.  There is a site even for it.  Here is a link to the START study FAQ page should anyone be interested in it:  http://www.thestartstudy.org/faqs.html

Right now, I am putting April 6th as my start date on hold.

[mecch]

You are repeating the same material. 
You might like to ask that doctor who you think recommends meds right away why, seeing as there is no "proof". 
But you already HEARD the answer and seem to pretend that its good medical insight.
1) Might help your fatigue.
2) There are immediate benefits and maybe long term benefits to not having an actif HIV infection, such as less inflammation.

I get that you want proof that staring early gives an advantage but as said, sorry, there is not proof for you.  There is the medical opinion of your doctor about what might be the advantages to you, personally. 
Take the advice or leave it.   Sounds like there might be very tangible and immediate benefits in your daily life - more engery. 

I got your point about wanting to make sure you could afford the treatment once you start.  That seems to me a tangible reason not to, if you dont want to be tied to a job to get the insurance you need to be on HAART.   Thats for today and tomorrow.  Good reason.   But remember, eventually, you will need the HAART and will have to figure out the way its going to be provided for the long term.  But then, maybe health care will be in a different and better place in the USA.  Hope so.

[leatherman]

eventually, you will need the HAART and will have to figure out the way its going to be provided for the long term.  But then, maybe health care will be in a different and better place in the USA.

hmm , interesting reasoning for holding off meds (unless immediately neccesary) right now for those who don't fit the current guidelines yet. Rather than waiting to see what the START study says about starting early (since we know those who start "later" often do well - so says the guy on meds for 20 yrs LOL - so it's not like waiting till later is all "that bad"), but instead waiting until the health care situation settles down to make sure your medication funding is in place.

[forrest]

You are repeating the same material.

But you already HEARD the answer and seem to pretend that its good medical insight....

I don't want to get in an argument or offend... not my intention.  However, I do have to say, Mecch, that this didn't settle well with me.  I am SORRY that I am repeating the same material.  If, that is what you think. It certainly is not intentional!  This has been a really shitty ride for the past year and I am trying to come to terms with everything and trying to make (to me) is one of the largest decisions of my life right now.  It took me damn near a year to reach out for help on here and have appreciated the responses.  I was all set on starting on April 6th as a result of this thread and people's responses - however, things have changed with the last test results last week.  I now do not think I will be starting.  Sorry, if that is going in circles with you, but it's going in circles in my own head.  I'm trying to come to terms with a lot of things and this is one of them. I am processing through all of this right in the open where complete strangers can see along with my family and close friend. 

Maybe you did not intend to be what appeared to me - a rather sharp comment at me.  There is no pretending. I am being very real and frank.  I would imagine others have felt (or currently feel) exactly as I am and have these battles inside of them going on. 

This is very real and raw for me.  For some who have replied, you've been on meds for a long time or were forced on them, unfortunately.  I am fortunate (and very thankful) that I have a decision and I'm trying my damnedest to think through this. You are not the same sort of thinker as me - we are all different. Please be respectful to MY processing and I obviously process differently. 

Again, I'm not looking to start a fight or anything - I am NOT a debater! I don't know you, you don't know me.  Maybe I read you wrong. Maybe you are a great guy and didn't intend anything, if so, I apologize for speaking up.  But it bothered me and I needed to.

[mecch]

You are repeating the same material. 
You might like to ask that doctor who you think recommends meds right away why, seeing as there is no "proof". 
But you already HEARD the answer and seem to pretend that its good medical insight.
1) Might help your fatigue.
2) There are immediate benefits and maybe long term benefits to not having an actif HIV infection, such as less inflammation.

I get that you want proof that staring early gives an advantage but as said, sorry, there is not proof for you.  There is the medical opinion of your doctor about what might be the advantages to you, personally. 
Take the advice or leave it.   Sounds like there might be very tangible and immediate benefits in your daily life - more engery. 

Hello, I'm sorry. I did not mean to be sharp.  Also I'm sorry my sentence above isn't very clear! 

I meant to say, I was reading your comments up to your latest labs.

Now you are guessing, anticipating, about what you think a doctor is going to say - start soon. 

So I am suggesting that you ask this doctor what is his rationale for starting soon.

You are right that there isn't necessarily a proved benefit.

But this was so a month ago, a year ago, a few years ago.  The proof won't be easy to come up with.

So if some doctors are recommending early treatment, such as yours, it is a good question to ask them - why?  So if your doctor is recommending that to you, he can give you a rationalization.

His rationale may not even care that you don't have the needed CD4 drop to start. The recommendation to start may be made independent of that.   

My guess is that you aren't emotionally or psychologically ready to start. So this CD4 news can allow you to postpone.

If you aren't ready to start, and your CD4 doesn't say you need to start, then don't start.   

If you want to go with the wisdom of the doctor, who says start, then it means a leap of faith for you. Because yes, there is no "proof of benefit" for the population.

The benefit to you personally might be less fatigue. 

I think maybe you read me wrong.  I was saying, I read your post, and yes, you are going in circles.

But i do understand its a big decision.  Do what you think is best. 

An outside view, mine, is that you might be over-thinking it because that might be the kind of thinker you are.  And in that case, you might realize that sometimes we never get 100% surety about something, in order to make a decision, but we have to decide anyway.

Best to you.

[forrest]

Thanks a lot for your response Mecch. I appreciate you clarifying and letting me know that you didn't mean to be sharp.  I've been told by a bird that you are a good guy on these forums  so that helps me to understand where you come from as well    I'm glad I actually spoke up because otherwise, I would have had unwarranted animosity towards you possibly.     But I am glad that you also replied in the manner in which you did. 

It really has been difficult (probably more than I let on) in coming to terms with all of this.  Then, couple that with also having a really shitty work experience right now along with some other things and it all builds up.  I do a lot of research in just buying a tv, a stereo, a phone, etc.  So, making a decision such as this is way more important than a tv, phone, etc. 

I can't remember if I mentioned this already, but I also have really been struggling with memory over the past year or so.  I mean... really bad.  I can read something and don't remember what I just read.  Or, if someone is talking to me, I don't process.  I am not sure if it's hiv related or not - or it could just be all the things going on in my mind... but that doesn't help in the matter. 

I am very glad for this forum because now I can go into my appointment prepared and I can question him if he feels that I should still go on meds.  Not that I couldn't before... but help from you and others on here remind me of that.  Like you said, if he recommends it, I want to know his entire rational for his recommendation - not just a simple answer.  He needs to explain it so I can understand it and I am sure that I will come back here and post what he says.  He may (just as Leatherman said) just say that no, not time to start. Let's monitor.  Who knows - I won't until I actually see him. 

Thanks for your patience!

[buginme2]

Did the memory issues begin post HIV infection?  If so, mention it to your DR.  HIV can have an effect on memory.  The virus can (and does) cross the blood brain barrier.  Medication can offer some help with this (some medication crosses over the blood brain barrier more than others so its important to mention this to your doctor). 

At least this is all theorized. 

Also, you may be freaked out about starting meds now.  Im sure we could go back and forth for days about this but once you start meds (especially if you need to because of illness ) youll get used to it very quickly.

[mecch]

It really has been difficult (probably more than I let on) in coming to terms with all of this.  Then, couple that with also having a really shitty work experience right now along with some other things and it all builds up.  I do a lot of research in just buying a tv, a stereo, a phone, etc.  So, making a decision such as this is way more important than a tv, phone, etc. 

I read the title of your post "Help on mentally preparing myself to start taking meds" so it is for this reason I tried to look at what you are presenting and think about the "mental" side of things.

Nobody here is a doctor and I don't know if anyone in this forum is a psychologist or shrink, so its layman advice here, right?

I thought about his rather sloppy analogy, the point of which helped me mentally a few times in life.

Shopping, salesmanship,and buying.  And selecting services..

I hear what you are saying about doing extravagant research before buying a product that is important to you.  My brother is that type.  Let's say its a TV.  Well you can do the consumer research and get the general feeling of things, so you don't get ripped off, and end up buying something that pleases you.  Or you can really get lost in the research, things you can't really understand, cause you aren't a TV technician or media engineer. 

Or maybe there are too many models, and the one you decide on, you can't find in the store, or in your country, etc. etc. How may times has this happened to me! ANd you learn, there is a limit about this research, a little bit is good, too much may turn out to be wasted time, counterproductive.   

But you can do a reasonable survey in advance and if you are lucky, you might actually get a good salesman. Then you know a few things he the salesman knows a lot.

There used to be TV salespeople, that was their job and they did it for years.  I head an interview with a french one interviewed on the radio the other day.  A good TV salesperson is going to sell you the model that best fits your needs.  Ok, thats ideal, (if he's not a shark or untrustworthy salesperson.)  The salesperson does KNOW things you can't really. MIght even have wisdom and experience in serving just about your own needs, cause he has been doing it so long.  Might understand your needs better than you. (You are convinced you need this or that technology, and he knows its useless, or won't fit your imagined needs.)

This is professional expertise.

There are a lot of places in life where we rely on other's professional expertise.  We try to find the person who we trust, we trust them to look out for our interests, our goal, and we trust they have an expertise that we can never have.  Because we have our lives, our jobs, our families the things that we know really well. 

So we do that for services. Car mechanic.  The dry cleaner.  A cop.  A teacher.  A massage therapist.

Now when it comes to learning to live and deal with being HIV+, people decide to learn different amounts about HIV, about the medicine, etc etc.

Back in the 80s and 90s (when I was HIV- by the way, and a young man) some of my HIV+ friends because EXTREMELY knowledgeable about whatever could be known about HIV.  Part of the reason was there weren't so many expert doctors around, and there wasn't so much medical knowledge, and it was a fatal illness and the medicine was crap and yet one thought there could be medicine, and well, many other reasons as well.

Nowadays, you can decide exactly how much you want to learn about HIV but unless you are a doctor or scientist, or, unless you have an awful lot of spare time, you can't know all that much.  Because the knowledge in the field is VAST. You can't know everything.  So, the decision to start HAART, when and which one, is done in a much broader field of possible knowledge.  Yes, not at all like buying a TV. 

My personal view is that its my doctor's job to be up to speed about the latest treatment thinking, drugs, etc.  My doctor's job is to filter ALL the science to date, and all his personal experience of a practice of many many years, and many many HIV patients, through his expertise, and use it to do right by me.  I don't have to learn about "possible side effects" I don't have to learn about "what does science say the future might hold..." I don't have to learn about resistances and this or that or the other.  That works for me, personally. I'd rather be doing something else.

I personally find this mostly a relief. Shifting some power and responsibilities to medical science - through my doctor - doesn't mean I don't "control" living with HIV.  It does mean I don't have to know all the ways and whens and whys.  Its not my field - medicine.  Its my doctor's.

(I was fully convinced I was facing a shitty future when my natural genetics couldn't fight HIV in the least.  But my doc said, oh, no, the thing I told you the first day I met you still stands:  you will have a long life.  And now you need to accept that the HAART WILL work, even for you, yes!  And he was right.)

[Ann]

Hey Forrest, I've been meaning to come back here with an update after my Feb 21st appointment - but I procrastinate. A lot. (sorry)

As I mentioned before, I opted to see one of the doctors I know to be more sympathetic  to my situation than others. I was right and we had a very good discussion.

We talked about how I understand her hands are tied when my CD4s are over 500. She was very interested and allowed me to vent my frustration concerning this - she didn't become defensive (like some doctors I've spoken about this with), but she was happy to know I understood this side of things, despite my frustration.

I told her about the difficult time I had with recurring, persistent norovirus and high fevers in December and early January, and how I'm often tired and also how my skin isn't as healthy as it should be and how my joints are causing me pain again, after a few years reprieve.

We talked about how the length of time one has an untreated hiv infection can impact on health as one ages. She agrees with me that ideally, there should be a proviso in the current guidelines for people with untreated hiv for more than ten years or so, regardless of numbers.

My numbers from my last set of labs in July 2011 were VL 41,000; CD4 471, 24%. She didn't like the percentage too much and neither did I. However, as my last labs are seven months old, we came to a compromise.

I had labs drawn after our meeting. I will have labs drawn again in mid-May, but won't see a doctor on this visit. Instead, I will go back two weeks later when we will have two recent results in front of us and we can go from there. I will request to see her again and she's agreed - if both of my CD4 results are under 500, she will write me a script, most likely for Norvir-boosted Reyataz, plus Truvada.

At last! Well, I hope "at last". It will depend, as usual, on my CD4s. I'm hoping this will go in my favour, but knowing my obstinate body, well, I'm not going to get my hopes up too much. We'll see and I'll keep you all posted. Maybe in early June I'll be posting a thread on how my first few days on meds went.

[leatherman]

most likely for Norvir-boosted Reyataz, plus Truvada.

yummy! My favorite regimen during 20 yrs.

Good luck! Should I wish that you do have a couple <500 cd4 tests?? It just seems strange and wrong to wish that when I just wish I could get >325. LOL Usually we're hoping people get more not less cd4s but in your case....  Make sure to have the labs in the morning, after exercising and without a good night's sleep - maybe get good and drunk the night before too LOL That ought to help knock you down to the low side of the daily +/-100 change that's possible.

I also think you and the doctor have a valid thought about someone that goes 10 yrs without treatment but >500; especially when they've had any issues (like illnesses, tiredness, skin problems, etc)

[forrest]

It's been a loooong day...   but wanted to post.

@Mecch - I just realized that I never said thank you. I'm sorry.  I really did appreciate your well thought out reply. I like analogies actually! I find them very helpful.  I really do appreciate your replies!

@buginme2 - I've struggled with learning all my life.  That (come to find out many years later) is due to ADD (non hyperactive).  However, I have complained of memory issues quite  a bit over the past 2 years actually.  Enough so, that I went in to a clinical psychologist and had 5 hours worth of testing done.  Again, says due to ADD.  However, I really have been struggling with comprehending, remembering, recalling, etc. more so over the past two years I would say.  I believe I was infected in April 2010 and now it's almost 2 years later. I did mention this to the doc today (wasn't the normal one I see) and he said there is a study going on right now with hiv related memory issues. He said that he would send me info on it and then see if I qualify. I said I would very much be interested in that.  I don't know any thing more about it at this time. I don't know anything about the study or anything, so I will share once I know more.

@Ann - thanks a lot for the reply!!! I've honestly been wondering.  I then thought... aw geez.. was I not supposed to PM a moderator... then I thought, well, she probably gets a lot and just can't keep up with PM's as she replies to so many different threads, moving them around, etc. etc.  SO, I understand.  I find it tough to keep up with my own threads that I post on. 

So, no meds yet...   THAT is one thing that I would find frustrating about a national health care system.... BUT, not having to pay for it balances things out too... so just a difficult situation.  At least YOU are mentally prepared to start!

I'm glad that you got a doc that you could speak freely and open with.  I feel like the one that I personally saw today doesn't listen to me.  He's young and I just don't feel the vibe or the interest like the director does when he sees me.  It irritates me when a doc doesn't listen.  That's part of their job!!!

When you talked with yours about the length of time it's been and what that could be doing to your body... did she elaborate? 

I only ask... I was going to post this separately... but the doc I saw today STILL feels that I should start meds.  I even brought you up  in my visit today... I said, well Ann, the moderator on Aidsmeds... she's had numbers similar to mine... even higher VL... and yet she hasn't started meds... she's been a slow progressor for like 10-12 years...

So, just wondering how your doc handled the inflammation issue.  Mine has said that hiv inflames everything. All organs are inflamed... and that takes a toll on your body.  It's the number one reason whey he feels that I should start.   I am glad that you can see the same doc again in the future. I am really difficult on docs... meaning, I expect a lot out of them and it's important for me to have a good open relationship with them and for them to listen to me. 

Thanks for the update though!!!! 

@ALL - well, I went to the doc today... he still feels that I should start meds.  Even though my VL is 9,674, CD4 is 570 and percent is 33.6%.  I actually had this thread pulled up on my iPhone and had it on Mecch's comments...   (see Mecch... I really do appreciate). I asked the doc, "Can you please rationalize for me why you feel I should still start meds even though my numbers are good." 

I typed it out (I take my laptop with me to appointments as I have all my blood results over many years in a spreadsheet along with other things - I know... very anal    ) 

He said per the latest guidelines (Oct 2011 is what he stated), when the VL is above 500, he said 55% of doctors will say to wait and 45% will say start.  He falls in the category of the 45% and should start.  He said mostly due to inflammation going on in the body - that means, heart, liver, everything... it takes a toll on the body he said - thus, the fatigue because your body is constantly fighting the virus and he said it produces billions of virus per day... and likewise, my body is fighting off billions of virus per day...

He also said as we age, our CD4% also decreases yearly and the older you get, the harder it is to regain those (meaning, taking longer... and I have seen this with different posts on here... how long it's taken to get back up above even like.. 200). 

He said my numbers are good... he could see my CD4 getting to like 800-1000 starting now he said.  But really, that was his reasoning.

I asked about why my VL keeps on going down... over the past year, it has consistently gone down - even into a new log per my last test results. While at the same time, my CD4 remains pretty much the same.  My overall percent has gone down 3 percent.  He said he can't explain but looked at the supplements I am taking and said the he is a believer in supplements and that they could very well be helping.  I also watch carefully what I eat... but one thing that I know I need to be doing... and am not... is exercising. I do not exercise at all.

He did say that I can wait.  He was expecting me to get a script though for Complera today.  The whole staff was - I guess they have a staff meeting every morning and discuss the patients that will be coming in that day.  Thus, they all thought for some reason that I would be starting meds today.  But, at this time, I am going to wait. I am going back in in 3 months again and will see what those results say.  That's the game plan.  I don't think I am stupid for waiting, right? 

Thanks again to all!

[emeraldize]

Hey Forrest,

I just read your response to Bug re: your ADD. I just finished a post to a young woman here who also has ADD.

Go forth and try to see if you're near enough (unless run online) and eligible for an HIV study regarding memory. But, here's what I think--ADD is what's worth addressing for you. You'll sort out with your doc when you're going to start meds, but ADD has been with you all your life. And, it's a headbanger, for sure.

If you've not read one of the books by Dr. Hallowell, I recommend taking a look. In my opinion and experience, HIV is an extraordinary layer of stress for a person with ADD. And, when you're grappling with stress and the added chemical burden to the body, are problems with memory or comprehension a surprise? Nope.

Meditation and exercise (if you're not already doing this) might prove helpful for you. Learning about ADD and coping techniques is worthwhile. If you can find a professional with some ADD expertise and/or a support group, you might pick up some insight and techniques to focus your mind in ways you've not yet experienced.

Em

[TexasPOZ]

I went through a similar experience myself. What helped me was finding a doctor who paid attention to me, spent time with me, and gave me the literature on the drugs she was recommending and allowed me to make a choice between 3 different options. Just the fact that she cared was very helpful. The second thing that helped me was joining and HIV+ support group and talking about my feelings in group and privately with the people that I met there. The third thing that helped me was reading sites like POZ and The Body.com and getting as much information as I could. Knowledge is empowerment, and the three things I mentioned made me feel empowered. In fact, I learned to be my own advocate in all things health related. Starting meds is a serious decision, not to be taken lightly, because we know once we start, we cannot stop since adherence is so important. Best of luck to you.

[forrest]

In my opinion and experience, HIV is an extraordinary layer of stress for a person with ADD.

Hey Em - I just can't get this statement out of my head.  I am actually starting counseling and the counselor has a lot of experience both professionally and personally with ADD.  I will probably comment to him this statement.  Come to think of it... my doc never sent me info on this study... hmmmm... but I digress...

So many things to grapple with right now... coming to terms with HIV, dealing with all the things that are related to HIV (loneliness, loss of self esteem, shame, anger, sadness, not having kids, ends to certain dreams, determining meds, when to start meds, etc.) and then also dealing with other "life events" - can be very overwhelming... yet alone to also add onto it the memory issue but I suspect it's related to all the other stuff going on as well... do you have personal experience with ADD?  I'm not a reader... I have bought many books through the years.. and not one of them read from start to finish - they just don't hold my attention... and then I don't remember anything from reading them... so why bother.  It's frustrating.

You're right TexasPoz... it does help to have a doc that listens to you.  The doc I mention above in forgetting to send me the info is not my regular doc.  My regular one is awesome and has spent a lot of time with me talking through the whole med decision and lots of other questions I've had.  Thanks for your comments!

[emeraldize]

Hey Forrest,
I see you're online. I'll PM ya in a moment.
Em

[Buckeyerob75]

Hey Forrest! I'm new here and have been pondering the meds issue for the last couple weeks myself.

Your posting and the responses have been very helpful and even made me realize that MY OWN concerns were made clear.
By considering/taking meds it makes me:
1. Face facts and admit I have HIV
2. Face the fear of the potential side effects
3. Deal with the possible financial impact
4. Be concerned that I'll be responsible enough to adhere to a regimen *ugh* lol

In my mind it also means I should be more responsible with my diet, exercise, reduce alcohol intake, etc which I already do pretty good with. I'm seeing when I look for excuses I find them. lol The more I read on the forums the more I think starting meds sooner than later will be right for me. Your post was part of that decision- see how you've already helped someone else? 

[forrest]

Your post was part of that decision- see how you've already helped someone else? 

   That's cool Buckeyerob!  Thank you!  I am sure I am not alone, but I find it hard right now because it seems like all I do is take, take, take from the very limited support network that I have.  It's tough coming to terms with it all and all that it is involved with a diagnosis.  I don't feel that I add any joy to family or friends in my current state so it's nice to see that even while at the lowest part of my life, I can still make a difference or that this has helped someone.  That's cool and thanks for sharing!  I appreciate that. 

I agree with your four points - that is how I would say that I am feeling right now as well, other than your last one. I don't worry about being responsible enough myself... but it's good that you can see that in yourself... but at least your aren't blind to the fact.. it is your life you're talking about so hats off to you for acknowledging.  I still haven't made a decision myself. I go back and forth.  I am fortunate to not have to start meds... but then again, I don't want to lose what I have.  I have some other things going on right now and if it weren't for that, I may be starting meds while numbers are still good. Currently, I am leaning starting earlier than later.  I am going to wait 3 more months and see what the tests say then.  I really fight a lot of fatigue though and that would be a huge reason for starting (as well as the inflammation).  We'll see though.

Thanks again for your post - really appreciate that!

[forrest]

Mecch 

I understand there is a large variety of different kinds of CD4.  When HIV results in a CD4 wipe out, and the HAART is begun, immunity is rebuilt but there were SOME varieties of CD4 that were wiped out, and can never be rebuilt.  One HIV+ person's 750CD4 may contain a large variety of cells. Another person's CD4 of 750 can be a small variety of cells.  Its the same total number of cells, but not the same variety of cells.  Maybe this means something.

Your comment in this other thread really was informative and wanted to include it in this one b/c it is helpful (I think). I did not know this. This certainly makes me think that maybe I SHOULD start sooner than later - why take the chance?  Do you remember where you learned about this?  Is there a site that talks in more detail about it? 

Thanks!

[mecch]

Good question but I regret I don't remember where I read that.  Maybe someone who reads a lot of the science can pipe in.

[Hellraiser]

Good question but I regret I don't remember where I read that.  Maybe someone who reads a lot of the science can pipe in.

I've heard it before too.  If my coloring box of CD4s follows that rule I probably only have like magenta now.  Magenta CD4 cells for everyone!

[forrest]

I think I found something that supports what you are talking about Mecch & Hellraiser.  Was it something like this? 

"There are millions of different families of CD4 cells. Each family is designed to fight a specific type of germ. When HIV reduces the number of CD4 cells, some of these families can be wiped out. You can lose the ability to fight off the particular germs those families were designed for."

I found that on thebody.com  (http://www.thebody.com/content/art6110.html)

I may have read that before and it just went over my head   

THAT comment though... sure has stuck in my head... and that one idea or comment has me thinking more and more of starting versus waiting.  I've even been taking the meds I typically take at bedtime at dinner time to get used to it.

Interesting though about the different families of CD4.  Maybe that is why 50% of doctors support starting even above 500? Dunno.  Just thinking/typing outloud.  Too bad the START study isn't further along. 

Anyway, wanted to post that and see if that is what you were thinking of.  Thanks guys!

[forrest]

I got my latest labs back... I still appear to be doing okay unmedicated.  What do you guys think? 

It's still interesting that my viral load continues to go down.  And, I'm in a new log now.  My CD4 remains consistent, but my CD4% appears borderline?

On the labs, it says my CD8 is high? And my CD8% is high - I've noticed those pretty much continually increase. Not sure what that means. I have never understood CD8. Anyone want to really dumb it up for me and put it in a very simplistic way? I've read websites.. just doesn't seem to click. I can really struggle with processing things I read   

I'm feeling ready now to start meds.  I really do fear what it's doing to my body as it fights 24/7 and just the constant fatigue.  Logistically, I am torn due to wanting to move to a different state, which also means new job - new insurance... etc. etc. etc. If it weren't for that, I think I am ready.  It's weird how time has helped me to accept or be more ready to take. 

Thanks all!

[newt]

There's nothing really too wrong with your CD4 count or % and your viral load is medium-low.

So is there a rush to start? No

Do you have reasons to/want to? Your answer is.....

- matt

[eric48]

When I was confronted with the choice, I had somewhat similar numbers (although not as 'good' as yours) where there was no rush /reason to start.

Discusion with doc went like this:
- Any reason to start ?
- Doc: no obvious one, although your age should be considered
- Any reason not to start ?
- Doc : none

End of discussion, started 2 weeks later.

The more I read (learn ?) about it, the more I think the bug is a nasty fellow.

Hope this helps

Eric

[forrest]

Thanks guys! Sorry for the delay.

Newt - the answer is yes 

I saw my ID doc this week.  He spent yet another 1hr 20min with me.  I am so fortunate to have a doc that cares!! It's probably partially due to that fact I am in a smaller town as well. I dunno.

He said that he doesn't mind spending time with me.  He said I ask good questions and knows that I am a bright guy.  Said that I analyze a bit too much, but he accepts that.  On that note, I wish it were as easy for me as you Eric, but it's not   I don't try to be difficult, it's just how I am wired. I drive myself nuts at times. However, my analytical skills have also done well for me in life so it's a double edged sword. Anyhoo. He said that he realizes that I need to get this settled in my head and that he can tell me that he feels i should be on them, but he said I have to be ready and he's gonna do what he needs to do to help me get to that point.

Isn't that an awesome doc?

He explained the whole CD4 "family" thing to me. He put it into terms that made sense to me. I told him that I would relay what he told me 

He likened it to a bag of M&M's. In a bag of M&M's there are what... about 7 colors?  If you just sit there blindly and eat the M&M's, the amount of the colors will vary.  When you get near the end of the bag, most likely, you are only left with a couple colors.  The rest are gone.

When you go on meds, it's like the M&M fairy replenishes your bag of M&M's... but it can only replenish your M&M's with the colors that are there - can't bring back any of the colors that are gone.  So, if you are left with Blue and Red, that's all you're gonna have when the bag gets full again. The greens, browns, blacks, yellow - gone forever.

He went into a bit more detail on Naive, Directed, and Memory CD4's - but I won't go there. I just wanted to share that analogy he gave me as it works for me. 

I have been soooooo stinking fatigued lately. I have always had fatigue in my life, but lately it's been really bad. Since I've had HIV it's been bad, but lately - really bad.  He suggested I see a sleep doc again (I've seen in the past and have had 4 sleep studies, but never really worked with a sleep doc closely).  Fortunately, his wife is a well known one in town, which is cool.

For the fatigue alone, I am thinking about going on meds and due to the M&M's I am.    The fatigue affects how I process things when people talk to me, when I read, etc. - and that has been really bad too. I can't remember crap.

If I DO get a new job and move to another state (which I want to do), I just make sure that I pay for Cobra for that slight gap. He also said that he will help me with making sure I don't have a gap in meds too.  He said the clinic has funds and supplies for emergencies and certain situations.

Anyway - am I making sense? I feel like I am making progress to coming to terms with taking them.  I'm fortunate to be so lucky as to have time to process - I don't take that for granted. 

Anyway, always thankful for replies 

Peace.

[forrest]

OMG... that was a long post   

Looks so long once it's posted... sigh.  My fingers just got a blazin' 

[forrest]

Oh - and Ann - did you have new labs done?  How did they go? 

... I will have labs drawn again in mid-May, but won't see a doctor on this visit. Instead, I will go back two weeks later when we will have two recent results in front of us and we can go from there.

[forrest]

Hey guys

Please be gentle with me... I am still struggling with this... I go back and forth, back and forth... My counselor wanted me to list out negatives and positives of going on meds to try and figure out what I am struggling with this.  I was hoping that others may be able to provide help in regards to positives and negatives - please be honest...  

Right now, I am thinking that I will see what my labs are in August (3 month mark from my last) and then make a decision.  I am currently postponing moving... some things have changed... so may be here for one more year.... thus, that is pretty much not a factor any longer. 

I appreciate your genuineness and patience.  Thank you.

[Hellraiser]

Hey guys

Please be gentle with me... I am still struggling with this... I go back and forth, back and forth... My counselor wanted me to list out negatives and positives of going on meds to try and figure out what I am struggling with this.  I was hoping that others may be able to provide help in regards to positives and negatives - please be honest...  

Right now, I am thinking that I will see what my labs are in August (3 month mark from my last) and then make a decision.  I am currently postponing moving... some things have changed... so may be here for one more year.... thus, that is pretty much not a factor any longer. 

I appreciate your genuineness and patience.  Thank you.

Pros:
1) You will actively be fighting the virus instead of letting it run amok in your system.
2) You will not feel as if you are helpless against HIV ravaging your body
3) You will feel better/have more energy
4) You will no longer be heading toward a lower CD4 Nadir which means your CD4 will remain higher in the long run
5) With an undetectable viral load you will be less likely to transmit the virus to someone else

Cons:
1) You will have to take a pill for the foreseeable future
2) You will have to maintain health insurance to be able to afford your medicine
3) You will potentially be contributing to organ toxicity with unknown side effects in the extreme long run

[forrest]

Thanks Hellraiser! I appreciate you taking the time out to give me a reply.  I think others have given up on me    Or maybe people don't really care.  I dunno.  Anyway, I appreciate it - it's helpful to see it this way, which is why I think my counselor wanted it done as positive and negative. 

[AgilityAddict]

Hello Forrest!
Wow, I have read through all the posts since the initial one - no wonder you are fatigued young man!

I am going to give you a different, but hopefully fresh perspective, and hot off the press from very current and real experience. I'm going through it as we speak.

First a little about myself: like Ann, I am a long term slow progressor, so my counts are still ok. CD 4 in Dec 11 was 560 and VL 14000. Now in May 2012, my CD4 count was 483 and VL 16000, so essentially all still ok, especially considering it's been 17 years! (I serocoverted in 1995)

I lived  just across the water from the island Ann describes for many years, I'm sorry I didn't get to know her then, she sounds like a wise and strong woman!

Starting treatment was a big decision for me, and I could relate to all your concerns in your early posts. Yes, many people take pills for various reasons and illnesses life long so it might seem to others not to be a big deal. But there is a difference here, it's an important difference, and please take this seriously. You must be ready because once you start, you MUST do it 100 % and give it your full commitment. Please don't listen to comments such as Eric48 who suggests its ok to miss one occasionally. It's not ok, and all the recent scientific evidence backs this up. Taking it everyday at the same time makes all the difference in keeping healthy long term. As with anything in life: always load the odds in your favour. It is a privilege to have a treatment that works available; this has not always been the case, so take it seriously.

PREPARE yourself well from a practical point of view to achieve the above, for example:
1) get a watch with a few alarms, so you get a warning just before you are due to take it. This has really helped.
2) decide on a time of day to take it that works best for you and fits with potential side effects: e.g. I take Atripla at night and therefore sleep through mostnofnthe side effects.
3) get a weekly dosset box with the pills clearly placed in marked daily compartments. When one is anxious or busy it is VERY easy to forget within in a few minutes whether you "automatically" took your tablet or not. This will be crucial for you as you are already anxious and battle with your memory. (anxiety causes and contributes hugely to memory problems) It is then very easy to physically see you have taken it. Without this system, especially in the earlier days, it is easy to make an oversight, and the implications are serious.
4) choose a "captain for your ship". I agree with some earlier posts: you can't known everything about HIV and treatment, it is too vast and too specialised. It sounds as if you have a good rapport with your specialist. It's fine tonhaventhe counsellor for support but the HIV specialist should be the captain of your ship when it comes to medication, not the councillor. The councillor can then help manage your stress etc.

BUT I have to share a very important thing. Anxiety is crippling,maand the longer you let this anxiety go on for, the more confused and unwell you will feel. People underestimate on how many levels anxiety can affect one.
FROM my own and very real and current experience, prepare yourself, and then bite the bullet and do it: start. YOUR ANXIETY will come down a whole lot of notches when you get underway! It's hard but you have to be tough now and those around you will support you.

If you can't do it right now, kick the whole idea into touch and don't revisit it for another 12 months if your counts stay ok. Either way, you must decide because you are going to make yourself very I'll otherwise! It felt like it was a huge responsibility for me, making the decision really hard, as I have dependant relatives to look after and a stressful, full time job. I didn't want to muck it up for any of those reasons!

If I made a judgement error in any way, it was possibly that I did not take a good two weeks off work to negotiate the new treatment. I have experienced pretty bad side effects but I've been a bit unlucky with that, and many don't get them. But if you do, you have that cushion and a bit of grace to put your feet up when not feeling 100% and with a bit of patience and medical support, one copes and gets over side effects!

The very best of luck and positive thoughts to you. I am also new to the forum and find it very helpful! Hang in there!

[AgilityAddict]

Apologies for the spelling and typing errors in my above post!
Also, just for clarity, I started Atripla two weeks ago. I have never before been on treatment.

[emeraldize]

You must be ready because once you start, you MUST do it 100 % and give it your full commitment. Please don't listen to comments such as Eric48 who suggests its ok to miss one occasionally. It's not ok, and all the recent scientific evidence backs this up. Taking it everyday at the same time makes all the difference in keeping healthy long term. As with anything in life: always load the odds in your favour. It is a privilege to have a treatment that works available; this has not always been the case, so take it seriously.

Hi Agility Addict,

Welcome to the forums.

All due respect, but having just started your regimen, as you were blessed as a LTNP since 1995, I don't think it's wise for you to advise Forrest to not take Eric48's comments into consideration. Further, you are quoting the optimal setting vs. what happens in real life.

After your first two years of meds, tell us you've had a perfect run, taken it with the precision of space shuttle launch team---- and I'll guess you're a hermit with little else to do. It rarely goes this way for most people that they never, ever miss.

I've seen you advising Johnnyl similarly as if you've been dosing for some extended period of time, you haven't. In fact, you stated you thought he was doing well when he's just recently had his first dose and I inquired how he was doing and you post right after me as if he's recently replied---he hasn't!

So, I'll serve your advice back to you -- you take your dosing seriously and leave the advising to those who've got some experience. (I don't count myself among them at a mere 1-3/4 years in on meds following a seven-year run of no meds required.) You're a self-reported old-timer in the viral world, but in the regimen world, you're a newbie.

Em

[jkinatl2]

Hi Agility Addict,

Welcome to the forums.

All due respect, but having just started your regimen, as you were blessed as a LTNP since 1995, I don't think it's wise for you to advise Forrest to not take Eric48's comments into consideration. Further, you are quoting the optimal setting vs. what happens in real life.

After your first two years of meds, tell us you've had a perfect run, taken it with the precision of space shuttle launch team---- and I'll guess you're a hermit with little else to do. It rarely goes this way for most people that they never, ever miss.

I've seen you advising Johnnyl similarly as if you've been dosing for some extended period of time, you haven't. In fact, you stated you thought he was doing well when he's just recently had his first dose and I inquired how he was doing and you post right after me as if he's recently replied---he hasn't!

So, I'll serve your advice back to you -- you take your dosing seriously and leave the advising to those who've got some experience. (I don't count myself among them at a mere 1-3/4 years in on meds following a seven-year run of no meds required.) You're a self-reported old-timer in the viral world, but in the regimen world, you're a newbie.

Em

This. Seriously, this.

I've given myself a lot of leeway and a lot of slack. If I miss a dose or so a week, I don't sweat it. I just mentally smack myself and try to be more vigilant.

Been on and of meds of all sorts for HIV since 1994. I'm running about 80 - 90 percent adherence nowadays. Undetectable viral load for almost a year now, and little if any resistance to anything.

I am on twice daily dosing of Prezista, Isentress, Norvir and Truvada (Truvada is only once a day.) Sure, life and it's assortment of emergencies ad drama gets in the way on occasion, but I've been pretty stable insofar as remembering to bring and take my meds.

It's absolutely necessary to cut yourself some slack as regards medication. I know this might run contrary to what some medical specialists shriek, but setting yourself up for an all-or-nothing scenario historically tends to end up with, well, nothing.

We are human beings, trying to be as good to ourselves and the world around us as we can. Sometimes we will miss a dose, or sleep through a dose, or put it in our pocket and get distracted. The trick is to make those moments the exception rather than the rule.

I've gotten fairly good at that, if I might day so myself. My long term friends on this forum can attest to the (largely self-imposed) difficulties I have had in that regard along the way, and the consequences thereof. It's a journey, this virus. This life.

[Hellraiser]

I missed one dose weekly for 8 months or so and I remained undetectable.  I've also recently missed 4 days in a row and the doctor seems to think no harm done.  So while this may not be optimal it's not an end of the world situation to miss a pill here and there.

[AgilityAddict]

Fair enough, as Em said you guys have the experience. Can only comment on the specialist advice and also from a number of friends taking it for years who have developed resistance on some regimes where they became more complacent. There is also more scientific evidence around to show that this is an important issue. Off course being human means we will all make mistakes and inevitably miss pills. Still think its worth loading the odds in one's favour, but I'll be first to put my hand up when I mess up! However, how you take it is up to every individual. This is just my humble opinion, please ignore it if it offends anyone!

[forrest]

Welcome AgilityAddict! Thanks for your reply.

I definitely appreciate the thoughts and communication from everyone.  However, I was wondering if I could reel it back in back to what I had last posted about - positives and negatives.  (or Pro's and Con's).  Leatherman sent me a PM and he said that folks at his ASO actually have a class (my local doesn't) that lists not only the pro's and con's of taking meds... but also the pro's and con's of not taking them.  But just really looking for the negatives and the positives of taking meds. 

I am at a point where I think it would be beneficial to take them. I am just struggling with getting over the hump for whatever reason.

My positives of going on meds:
1) Less fatigue (hopefully)
2) More energy and motivation (related to above)
3) It's an acknowledgement and a step forward - getting over a major hurdle
4) I'll preserve all my "M&M's" (immune system) versus letting it gets holes in it that I'll never get back
5) Less inflammation
6) Hopefully my memory comes back?
7) I'm assuming my body will thank me (but that is a double edges sword - as my liver/kidneys may not thank me?)

Negatives:
1) I have a dependency
2) Always need to be mindful of insurance, job, etc. to make sure I have money to pay for meds on a daily basis - it's not like my simvistatin that I can safely miss on occasion and it won't harm me
3) Side effects (albeit, seems like they will be minimal) - Complera
4) Toxicity of them

I think I have determined that I will take it at lunch daily... I eat lunch every day... almost at the same time... All I need to to is boost my caloric intake by maybe 100 calories and I will be fine.  AND, I think this will work because then I can take my Zegerid at bedtime because it's well past 4 hours of taking the Complera. That has been a fear as well... because nothing has worked GI wise like Zegerid for me. Nothing.  So that is important. That is a major logistic that I think will work out for me.

Anyway... I'm hoping for positives and negatives like Hellraiser did - that is actually helpful to me. 

Thanks for not giving up on me. Please don't.   

[emeraldize]

Fair enough, as Em said you guys have the experience. Can only comment on the specialist advice and also from a number of friends taking it for years who have developed resistance on some regimes where they became more complacent. There is also more scientific evidence around to show that this is an important issue. Off course being human means we will all make mistakes and inevitably miss pills. Still think its worth loading the odds in one's favour, but I'll be first to put my hand up when I mess up! However, how you take it is up to every individual. This is just my humble opinion, please ignore it if it offends anyone!

Hey AA,
We all do appreciate that there's an optimal way to do dosing---no doubt about it! And as JK and Eric48 and even I hope to point out--things don't always go optimally. That mental smacking JK reports doing--yep, I do that. I sometimes think the post-dose error internal flogging is worse than the error. Anyhoo. Stick with us. Yes, it's an individualized journey hence my caution about your caution re: Eric's advice when we're all sharing med war stories. Some of us pull the pin and toss it well, some of us don't. So, momentarily, I'll post again to reply to Forrest's focusing request.
Em

[emeraldize]

Strictly from a numbers perspective the positive outweigh the negative. That's how I typically use a pros/cons listing exercise. However, you seem to need more. I'm adding some comments in CAPS.

My positives of going on meds:
1) Less fatigue (hopefully) I THINK 1. is NEARLY THE SAME AS 2 so YOU'RE DOWN TO 6

2) More energy and motivation (related to above)
3) It's an acknowledgement and a step forward - getting over a major hurdle
4) I'll preserve all my "M&M's" (immune system) versus letting it gets holes in it that I'll never get back MAYBE NOT ALL THE M&Ms BUT MORE M&MS
5) Less inflammation
6) Hopefully my memory comes back? YOUR MEMORY MAY BE SKETCHY DUE TO TOO MUCH STRESS
7) I'm assuming my body will thank me (but that is a double edges sword - as my liver/kidneys may not thank me?) WHAT IF SOMETHING ELSE POPS UP? SOMETHING NON-HIV?

Negatives:
1) I have a dependency ON MEDS? YOU ALSO HAVE A DEPENDENCY ON FOOD, AIR, TRANSPORTATION, SHOES
2) Always need to be mindful of insurance, job, etc. to make sure I have money to pay for meds on a daily basis - it's not like my simvistatin that I can safely miss on occasion and it won't harm me FOR THE 3 of the 4 ITEMS LISTED IN 1. YOU NEED A JOB IN ORDER TO PAY FOR THEM
3) Side effects (albeit, seems like they will be minimal) - Complera IF THEY'RE MINIMAL CAN YOU COUNT IT AS A NEGATIVE? YOU CAN COUNT IT AS A POSITIVE ESPECIALLY IF YOU ULTIMATELY ADJUST AND THE EFFECTS SIMPLY FADE
4) Toxicity of them  RISK OF TOXICITY ENDS UP ON EITHER SIDE OF THE EQUATION ULTIMATELY - EITHER DUE TO USE OF MEDS OR NON-USE IN WHICH CASE THE VIRUS BECOMES ESSENTIALLY EVER MORE TOXIC

[buginme2]

Re-reading your post, you tested positive in April 2011 and have been struggling with starting meds since then?

Its been over a year and your still struggling with this?  Do you really think making a list of pros or cons is going to change that?

I read a book once written by a psychologist and the moral of the story was ...  sometimes you just have to do things that are uncomfortable to move forward. 

Its time to just do it. You may hate it.  So what, do it anyway.

[AgilityAddict]

I think that's a very valid point "buginme2". It's in some ways what I was trying to say in a diplomatic way (unsuccessfully).
Pro's and con's lists are not terribly effective in this instance if you do notnhavenone very powerful overriding argument for either side. Not very helpful to count 5 against 7 etc. In any case, one pro, for instance better quality of life and improved functioning can outway numerous numbers of cons.

People are very rarely "100%" about anything. But whereas one may have mixed FEELINGS about something, the behaviour (in this case whether you take the pill or not) has to be all or none.

Also, if you work with lists of Pro's and Con's, try to end with the list of Pro's. At least it ends up steering you in the direction of making a positive decision.

That's also why I tried to steer away from this Approach and encourage using the expert you trust to be the leader (whilst you still make an informed decision) and then get on with it. It sounded from what you reported, Forrest, that you have a specialist who is interested and very supportive. That is a huge bonus!

I also tried to include some practical advice on adherence. I don't want to raise any arguments, but perhaps refer Forrest to the information leaflets on this, your very own site that point to the same thing I was trying to say. No one can be perfect all the time, but if one doesn't know what an optimal regime is in the first instance, or have help in trying to achieve it, you have much less chance of getting even close to it! That certainly doesn't mean you have to mentally punish yourself if you make a mistake. Knowledge is power, and if we try to ignore the sometimes uncomfortable truths about difficult issues, it unfortunately don't make them any less true.

Anyway, all the best for the future and your decision. I will shut up now and not interfere again!

PS: just for reassurance: Em mentioned perhaps you can only achieve optimal adherence if you're part of a space shuttle mission team. I'm not in that line and live a busy life, working full time, doing lots of other things to provide a good work life balance ,

[Common_ground]

One thing that helped me when going on meds was to think that you will take your meds, day by day,week by week or month by month.

I believe its wrong to say " Youre going to be on meds for the rest of your life." This statement imposes that you will pop pills for 20+ years. Dont fall into that trap!

Take a look at the history of this disease and how the treatment has changed. No one knows what the future will look like treatment wise, but what we can do is to look at the history and see how things has changed through the years. From no treatment, to life sustaining treatment and to better and less toxic regimens allowing us not only to survive but to even switch around and make individual choices. The research and knowledge today surrounding this disease is vast and it will, just as the meds/treatment, continue to improve. To think otherwise would be ludacris.

Im not saying we will not still need some help in controlling the virus but with the history as the ONLY fact we can certainly rely on today, things will look different in 5 - 10 years, unless all research comes to a halt, which is why its important to support local and international organizations working for our cause. 

   

[leatherman]

I believe its wrong to say " Youre going to be on meds for the rest of your life." This statement imposes that you will pop pills for 20+ years. Dont fall into that trap!

personally I've never understood the big deal about taking meds "for the rest of my life". I don't know a person over 35-40 who isn't taking some kind of daily medication. And I sure don't know anybody that would freak out over taking tylenol every day.

I'm just thankful as hell that I never had to do an injectible medication (came close to Fuzeon once) like needing insulin several times a day. There ARE worse/more tedious things that popping a couple of pills a day.

mikie
who HAS been popping HIV pills for 20 yrs and hopes to be doing it for another 20++.

[Rockin]

Im a noob on this but I don't mind taking my meds at all. I feel much better knowing that Im under treatment and undetectable and that Im giving my immune system time to heal itself after my PCP last year.

A few weeks ago everyone in my house got sick...everyone had fever, coughing and my mother, especially, got so sick we thought she might have developed PCP as well. Turns out it was synus but it was a really nasty one.

All I had was a mild throat infection that lasted 2 days with no fever. And for that I thank my meds.

[emeraldize]

PS: just for reassurance: Em mentioned perhaps you can only achieve optimal adherence if you're part of a space shuttle mission team. I'm not in that line and live a busy life, working full time, doing lots of other things to provide a good work life balance ,

Hey AA: That's not what I wrote -- you took it slightly out of context -- I was challenging you to report back in after two years of adherence along the lines you were proposing to Forrest and tell us you were able to do it "with the precision of" a space shuttle launch team. That's different than what you're noting here.

But more importantly, the OP asked for input on his list -- he wasn't inviting opinion on lists working/not working -- he even included a reference to a PM with Leatherman about an ASO using listmaking as a tool. So, can we put his thread back on track?

He's ramping up to taking meds and anyone who's had the luxury to have time to think about it and not have it be a life/death decision usually goes through a decision making process---it's different for everyone.

[AgilityAddict]

I'm aware of his request for more Pro's and Con's. I have been in the same position, agonising over the decision for many months and having " the luxury to have time to think about it". So I only speak from geniune current experience, "newbe" or not. I have used many Pro's and Con's lists and will continue to do so especially since my decision has not worked out that well. And off course different things work for different people. I think quite a few readers of this thread have noticed that the Pro's and Con's list does not seem to be helping him make a decision. I'm merely suggesting he perhaps adds an additional strategy as he has strength in his medical team. The expression "flogging a dead horse" comes to mind. But anyhow, if the list is the ONLY thing he wishes to use and that is helpful to him, off course he should absolutely persevere with it and again I wish him all the best!

[mecch]

Negatives:
1) I have a dependency
2) Always need to be mindful of insurance, job, etc. to make sure I have money to pay for meds on a daily basis - it's not like my simvistatin that I can safely miss on occasion and it won't harm me
3) Side effects (albeit, seems like they will be minimal) - Complera
4) Toxicity of them

1) Dependency? clarify please.
2) When one comes to terms that HIV medicine is the only way to live NOW, then this reasoning about being able to stay on meds for the duration, thus the insurance/job/cost factors, no longer offers a counter argument. Either you need the drugs now or you dont. If you need them now, and CAN have them now, then you take them now. Yes, worry how you will pay for them this year, starting them.  But  you dont worry about 4 years from now. When the world might be a war. Or your country goes bankrupt. Or you simply lose your job and must scramble to find the funding for the medicine.  Its simply not an issue in the immediate.  This is not to say its not a legimate fear - how will i always provide for my health and safety. But rather, its a misplaced fear in the reasononing around a decision to start or not start life-saving medicine.  You see.  I mean many of us have real fears for the future - will we have incomes, let alone jobs, secure housing - health care, etc etc. etc.  I discuss these fears rather often with my shrink because in Switzerland the culture is MUCH less precarious and its not natural to have all these fears, that Americans and people in more precarious cultures do have.  But, still, you have to really make the best of now. When you do have housing, job or income, do have health care, etc etc. 
4) Toxicity.  Same logic as 2.  HIV is HIGHLY "toxic".   Also, I missed the memo from my ID that my HAART is "toxic".

Forrest, Im thinking back now.  Do I recall correctly, or incorrectly, that you have rolling thoughts and or some obsessive thinking about many things in life?  Maybe I remember incorrectly.

[forrest]

Hi all

Sorry about the delay in response.  I read on here nearly every night... to keep up... but I don't always have the energy or mindset to reply.   

I promised that I would reply tonight though although I don't think I am thinking the clearest tonight. I am a bit tired.

I appreciate everyone's responses although I don't think I will reply individually to each - please don't be offended   

Em is right actually... the counselor wanted me to do a pro and con list just like Leatherman says they do at his ASO.  I typically am not a pro and con sort of guy actually.  I did one when I moved to a different state but in general, I just don't do them.  The point of him wanting me to do it is more of the negatives (cons).  He was going to try and dig into "what" is troubling me.  It was his way of trying to dig into why this bothers me.

Yes Bug, it has been over a year since I found out... however, it hasn't been a year that I have grappled with this.  It was when I signed up for the forum and yes, I have struggled with it since.  Trust me, I'd like to 'get over it' but for whatever reason, my brain is struggling with starting these particular meds.  If I were forced into it, it would probably be different. However, I am not at that point.

Do I NEED to start now?  No. Would it be advantageous? My doctors seem to think so.  The thing that really hit me was the whole M&M analogy.  That nearly pushes me over the fence to get on them.  It's too bad the START study isn't conclusive (finished yet).

Mecch, yes, I do tend to over think certain things, but this is a big decision in my mind.  I am not being forced onto them, it's voluntary at this point, which I really think makes it more difficult. Am I making the right decision to start early... or, do I enjoy the freedom.  You wanted me to clarify "dependency"... like that segway... went right into it... haha

What I mean by that is I have a dependency on these meds and all that comes with that - something I don't have now.  If I forget my Simvastatin, oh well...  it's not going to kill me.  Or, if I didn't take it for a couple weeks even.  However, not with Complera.  Do I skip my current meds? No. I am really good with taking meds.  This is just one more pill that will go in the pill box. No biggie.

I think I have even figured out that I will take it at lunch every day. I eat lunch about he same time every day of the week and all I have to do is bump up my calorie intake by about 100, which shouldn't be any issue. I THINK by taking it at lunch, I will then be able to take my Zegerid (PPI) at night since it's well over 4 hours since I have taken the Complera.

I'm trying to figure out why I am having a struggle with this... that was the whole point of the pro and con. Most of you probably think I'm nuts... oh well. I know that I am not.   I just don't always know why I think or feel the way I do and that is what I am trying to do in a very public forum. 

I have little support with HIV.  Thus, me talking about it here is basically all I have.  I even thought about just not saying anything more in this and just trying to do it on my own.  But I don't think I can. It can be frustrating when people make comments about the amount of time it's taking me to process this. It's like... sorry... I do it at a different pace. We all process things differently and at a different pace.

I just don't know what it will take to CLICK with me.  Something will finally click... and then I will be.. okay, time to start.

If anything... this thread will be helpful for others that are struggling.  I hope in some way, other newbies will read this and see the struggles and what others have commented on and it will help them, too.  Someone (I can't remember who) already said it helped them... that sort of thing totally makes my day.

All I can say is that I am sorry for the slow processing... and for whatever reason things not sinking in.  Maybe if my doctors and some others haven't told me that yes, you need to be "mentally prepared" to take these... I dunno. I know my doc wants me to start, but he said that he can't make me start and that it's important that *I* be ready, it doesn't matter what he thinks.  So, I am trying to be ready. 

After a doc visit today with a sleep specialist (on the life long fatigue), she agreed that I should get my sleep study done along with a visit to the GI doc (in conjunction for some special testing) BEFORE I go on meds.  She actually so happens to be my ID' doc's wife    So that is pretty cool. And she was just as cool as him with giving me over an hour of her time today   

What will it take for me? I just don't know... I'm trying.... trust me.. I'm trying to be prepared. 

What would probably be helpful is for some who have not gone on meds and are in the same shoes as me... or have gone through this mental back and forth and then finally went on meds... what was the straw for them? A lot of folks are just forced onto them b/c their numbers are bad. In some respects it's a curse when you don't have the bad numbers because like Mecch has stated before, it leaves more time to think... and for someone like me, that's not always a good thing. 

I've read this thread many times actually... but I just don't remember a ton... that is an issue I have been struggling with... memory. I can read something and remember crap.  If I remembered more, it would probably be a lot more helpful too... but that is another story....

I think I am rambling. Sorry.

[leatherman]

I know my doc wants me to start, but he said that he can't make me start and that it's important that *I* be ready, it doesn't matter what he thinks.  So, I am trying to be ready.

exactly!!
now the chance of side effects is small (don't forget there may always be some as you adjust to the meds coming into your body and the HIV dying off), and that there are others meds to switch to and ways you can compensate for side effects.

However, it is best for you to be ready for the meds. that way IF you do have some "issues" for a while, you'll be engaged with dealing with the problems and hanging on through them. If you're not ready for the meds, you might use any excuse to quit, slack off on the meds, or slide into some depression. Since it takes >95% adherence, you do need to be geared up for starting the meds and dealing with all the side effects until everything works out and your numbers level out.