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Author Topic: 7 years in and I just got the news that I need to start meds: your experience?  (Read 2497 times)

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Offline CalvinC

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Hi. Just got off the phone with one of my great docs. After years of decent numbers (under 20K VL and 500-800 CD4), my VL is 59K and CD4 @440. She recommends going on meds.

This is hitting me hard. I'll confess: I've lived for years (since May 06 when I got the diagnosis, from a likely infection in Feb 06) not really thinking about it or even believing that it mattered much. It hasn't been denial: I've talked to my therapist about it, went to an AIDSMeds conference, have poz friends, my family knows, etc etc. But it's the whole pill regimen that I have to start now that I find difficult.

I'm certainly appreciative of all of you who have come before me and have gone through trials so that my experience on meds will likely be just fine. I get that. But a complicating factor is that, after about 20 years of being on meds for OCD, I decided three weeks ago to taper off them, to see what life would be like not having to pop pills daily, to live free of medication. And now, I'm not ever going to see that, am I? Sounds trite, maybe, but I am just crushed and in tears.

Anyway, I am wondering what your individual experience is/was.
« Last Edit: March 25, 2013, 12:06:05 PM by CalvinC »

Offline Jeff G

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Hi Calvin . You certainly had a great run without HIV meds so I can understand your distress about having to make some changes .

I have great hope that once you begin meds and get adjusted to taking them that you will feel like allot of us did when our time came for treatment and that's relieved that we are on a well tolerated combo and this nasty virus is under complete control .

I guess one sliver lining is once this is behind you its something you wont have to bother with again . Best of luck and keep us updated .   

Offline wolfter

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The one thing that struck me is that you're stopping your OCD meds while probably starting HAART.  I'm no expert on those particular drugs, but I would probably wait to determine if there'll be any issues that might necessitate restarting them.

I would just be concerned that if any side affects arrive, how would you differentiate which thing is causing it.

Best of luck
Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline buginme2

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Hi Calvin I wish you success in your new treatment.  I hope you can recognize that some of the feelings you may be having are possibly just nerves and will quickly pass once you begin meds.   You've taken medication for other things before, it's not like this is any different.  You very well may be put on a simple one pill treatment that you probably won't even think twice about after a couple weeks.

Try not to psych yourself out and upset yourself. 
Don't be fancy, just get dancey

Online mecch

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  • red pill? or blue pill?
Hi. Just got off the phone with one of my great docs. After years of decent numbers (under 20K VL and 500-800 CD4), my VL is 59K and CD4 @440. She recommends going on meds.

This is hitting me hard. I'll confess: I've lived for years (since May 06 when I got the diagnosis, from a likely infection in Feb 06) not really thinking about it or even believing that it mattered much. It hasn't been denial: I've talked to my therapist about it, went to an AIDSMeds conference, have poz friends, my family knows, etc etc. But it's the whole pill regimen that I have to start now that I find difficult.

I'm certainly appreciative of all of you who have come before me and have gone through trials so that my experience on meds will likely be just fine. I get that. But a complicating factor is that, after about 20 years of being on meds for OCD, I decided three weeks ago to taper off them, to see what life would be like not having to pop pills daily, to live free of medication. And now, I'm not ever going to see that, am I? Sounds trite, maybe, but I am just crushed and in tears.

Anyway, I am wondering what your individual experience is/was.

But the vast majority of us do not have psychological challenges about taking pills everyday. A few do.  Some people do get pill fatigue about the HAART medicine -- but after many years, and often it isn't about the taking of the pills, its about deteriorating quality of life.

A few people are a bit nervous having to commit to daily pills, when starting HAART, but then they get into the routine.
 
So how is our experience going to relate to yours?  You seem to have a very particular, individual, unique, view about daily medication.  And you just reached the end of your patience with the OCD medicine....

So you are going to have to reevaluate your priorities and beliefs about daily medication, or you will be starting HAART with very bad faith. 

There is no way around it for HIV+ people. When its time to take the medicine, we take it, and for the foreseeable future.  And the daily pill popping isn't really the major challenge.  Living with HIV, the stigma, affording the drugs, maybe health challenges related to HIV, sure - that all can be a pain.  But actually putting the pills in the mouth?  What am i missing here.  Maybe it sucks but the alternative is worse..  We can't do anything about our lot.  It is what it is.  Sooner or later, HIV+ people take daily pills. 
« Last Edit: March 25, 2013, 02:52:30 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline leatherman

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  • Google and HIV meds are Your Friends
Sounds like you fit right in the normal pattern of progression from HIV towards AIDS. There's nothing unusual at all about going 7 yrs from infection to medication - especially since 10 yrs after infection is more often than not the point at which AIDS, with illnesses and hospitalization, happens. You're definitely starting meds in time to stop your decline to AIDS

to live free of medication. And now, I'm not ever going to see that, am I? Sounds trite, maybe, but I am just crushed and in tears.
I would suggest that while your thoughts about pills aren't unusual, neither are your thoughts accurate.

I only know a handful of people in my life who do NOT take daily medications. Nearly everyone I know, from their teens to their 90s, take medications every day. Heart, cholestrol, bi-polar, pain meds, anti-cancer, hormones, digestive, sleep. You name it and my friends, family and I are taking them. And we're not unusual - just watch some TV and think that for every one of those medication commercials, there are millions of Americans taking those meds ... daily!

These meds are our "friends" and these meds keep us happy, healthy, sane and ALIVE.

I hope that instead on focusing on the unrealistic option that you should become med free, you can come to grips from how beneficial your meds (especially the ARVs as they are the only thing that'll will keep you dying from HIV disease) are to your health and focus on what you will need to do to stay adherent to your meds.

Always remember that like google, meds are our friends.  ;D
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline mitch777

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Anyway, I am wondering what your individual experience is/was.
Hi Calvin,

Ok, since you asked...

I was infected in Oct. 1982. There was no testing at that time to determine diagnosis, but I knew.
I was "officially" diagnosed as soon as the test became available.
My CD4 counts (if my memory serves me) hung around 400ish for many years and my viral load was very low too.

My earliest docs put me on AZT for a couple of years but it became too much for me to stomach (literally).
I stopped taking it for that reason as well as the reports that it wasn't really keeping people alive.

After years of quarterly testing my VL took an exponential leap. This was in 1995 or 1996.
So, yes, I understand how you feel going so long without meds and having to face the new reality.
I was already mentally prepared as the newer life saving meds had just become available.
Whew! Lucky me! :)
I am here today more than 30 years after being infected due to these meds and my VERY lucky timing.
Glad to know my VL cooperated with the drug manufacturers! ;D

The good news is that the meds available today are SO much better and the option of meds keeps growing as well.
The "idea" of starting meds on a permanent basis got me a bit nervous before I started taking them, but the reality once I started turned out to be "drama free".

I'm glad you asked the question.
It IS part of our common experience with HIV (and so many other health issues as leatherman pointed out while I was typing this ;).)

Hope this is helpful to you.
Hang in and take your pills now. :)

m.

« Last Edit: March 25, 2013, 03:36:09 PM by mitch777 »
32 years hiv+ (oct. 2013) with a curtsy.

Offline tednlou2

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So, one off lab and it means meds now?  I am very surprised no one said you should get another set of labs or two.  If you had always had numbers around 800 and a vl under 20k, then I would say take your time and don't be rushed. 

I am in a very similar situation with labs.  My doc is awful.  He never mentions meds, unless some resident students are with him.  Then, he's Mr. Hit Hard and Early.  I

Offline leatherman

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So, one off lab and it means meds now?  I am very surprised no one said you should get another set of labs or two.
to be honest, I saw no reason to even consider talking to the OP about waiting because:
...more studies recommend starting meds immediately (it's been an evolving issue moving from 200 to 350 to 500 to...) to avoid any degradation of immune system and to help prevent the spread of HIV;
... the OP is considering the current recommendation from his doctor to start meds (not a recommendation to delay meds);
...since almost all HIV positive people eventually need medications in the long run anyway; and
...since a waiting period probably isn't needed any more because modern meds have much fewer issues and are much more tolerable.

just think. if we started meds upon diagnosis like we do with almost all other diseases, we wouldn't even be having this discussion. I think we're only having this debate because of two things. Of course, one is money. HIV treatment is costly, and always has been so treatment has been put off for financial reasons. Please don't think you haven't been told to start meds yet because "they" care about you. For three decades, the start of treatment has often been tied to availability and access to meds. Neither insurance nor the state wants to pay for you to get treated, so delaying meds to a cd4 count of 350 is a financial decision.

Another reason would be because studies haven't caught up to the science yet. When AZT was the only med, it was clearly a better health choice to wait as long as possible before starting meds. However here in 2013, with over 30 meds to chose from and so many meds refined to reduce side effects, waiting for years to treat the disease doesn't seem like the correct way to deal with this virus at all.

Besides, the OP has clearly expressed issues with taking any medications. Rather that recommending more waiting time, it seems we probably should be recommending counseling so the OP gets past his irrational fear of meds. Then when another set of labs eventually shows that it IS time for meds (as lab work inevitably does), the OP will have come to grips with the need for meds. ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline buginme2

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So, one off lab and it means meds now?  I am very surprised no one said you should get another set of labs or two.  If you had always had numbers around 800 and a vl under 20k, then I would say take your time and don't be rushed. 

I am in a very similar situation with labs.  My doc is awful.  He never mentions meds, unless some resident students are with him.  Then, he's Mr. Hit Hard and Early.  I

The OP's doctor is recommending he start.  I don't see the need for anyone on an Internet forum to second guess his doctor especially when treatment guidelines now recommend everyone begin meds, especially those with a cd4 under 500. 

I think a more appropriate response is to discuss why the OP is feeling the way he is about starting and getting him prepared to take his medication and preserve his health, not to delay the inevitable. 

Ted was part of your post cut off?  Seems like you stopped mid sentence.
Don't be fancy, just get dancey

Offline newt

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Hang on hang on...

A CD4 count of 440 is still in normal range, and as as a one off result in a series of higher results is not definitive. Retest your CD4s, think, then start meds if you want/they seem justified perhaps?.

- matt
"The object is to be a well patient, not a good patient"

Offline CalvinC

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Thank you all for your responses (so far).

To clarify a couple of things: My GP is excellent, and he has worked on hiv/aids in tandem with my specialist for about 30 years. I had a chat with my GP about 6 mos ago, and he was able to (again) objectively lay out "where it's all at", leaving the decision up to me (though he said he was more in favour of "wait and see" than not).  So, I get tons of excellent medical care and advice.

The person who called works with my specialist, and she (also wonderful) suggested that I speak to my GP (which I am, on Thu) in light of these new numbers. She runs clinical trials and thought I might like to get on the next one, which begins in a month or two. So, I am going to discuss it with my GP before I do anything.

Taking pills is not new for me. I think I've missed maybe three or four days over the past 20 years, by accident. My OCD is not serious, and I lived a good part of my life without my OCD meds (which have zero side-effects). I've been fortunate. I have excellent medical coverage here at work (and in Canada), so I don't have to give that a second thought.

I've been going through a lot lately, in terms of getting older, "what that means," what my options are, where I've been, how I want to live out my life, and I decided that maybe my OCD meds had become placebos. (After all, I do know life without them, and I wasn't hospitalized or anything.)

So, today's news made hiv very "real" for me. It's as though someone has (again) tapped me on the shoulder and said "Uh uh, we've still got your number and you aren't going anywhere." Well, where was I going, in any case? Perhaps not being on meds has allowed me to continue a fantasy of well-I'm-not-"really"-sick. I don't know.

Which is why I asked what other people have gone through. Often I hear that people get a renewed feeling of energy, and the like. (I do fine now, I sleep well, lots of sports etc.) So, I'm wondering.... 

Offline Joe K

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Hello Calvin,

My name is Joe and I'm in my 29th year of being poz.  I also suffer from clinical depression, anxiety and PTSD and the medications that I take, to treat both issues are what allow me to live a reasonable life.  As a sufferer of mental illness, I can appreciate the challenges that can arise.  What I cannot understand, is how you can just stop your OCD medication, simply because you want to experience life without pills?

I'm assuming the meds were helping you, so why did you stop them?  I believe this is really important, because you seem to be saying that meds don't matter, so why take them?  I hope I am reading you wrong, but there are some huge pieces missing from this puzzle.  Something made you stop your meds for your OCD, so what is to prevent you from just suddenly deciding to stop your HIV meds, for the same or other reasons?

I know I may sound a little cold, but that's not my intent.  I empathize with what you are experiencing, however my experience with HIV and mental health issues tells me that the picture is not complete and I'd like to hear some more of your thoughts.

Joe

Offline leatherman

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  • Google and HIV meds are Your Friends
Perhaps not being on meds has allowed me to continue a fantasy of well-I'm-not-"really"-sick. I don't know.
yes, you've definitely been living in a fantasy then. ;D For 7ish years, HIV has been non-controlled in your system. Just because you don't feel sick don't really mean much. Many people don't feel sick until just before they go into the hospital with cancer or AIDS. Taking meds will be when you finally begin to take control and begin to treat the disease instead of just letting nature take it's course. Taking HIV meds is a very pro-active step in taking charge of your health.

Which is why I asked what other people have gone through. Often I hear that people get a renewed feeling of energy, and the like. (I do fine now, I sleep well, lots of sports etc.) So, I'm wondering.... 
frankly, I would tell you that it doesn't matter. ARVs are the only thing that'll control HIV. Whether you get more energy or not really shouldn't matter. Untreated HIV nearly always leads to AIDS and that leads to death. I, for one, would rather be a little tired (which often comes with getting older anyway LOL says the man who just turned 51) than dead. Seeking some miracle feeling out of ARVs is not what you should be seeking. ARVs do not improve your immune system per se. ARVs basic duty is to do nothing but stop HIV from reproducing allowing your immune system to be whatever it was genetically meant to be.

So, today's news made hiv very "real" for me. It's as though someone has (again) tapped me on the shoulder and said "Uh uh, we've still got your number and you aren't going anywhere." Well, where was I going, in any case?
HIV, when diagnosed in time and treated properly, is no longer the immediate death threat it was in the 90s. Studies from the early 2000s (published a decade ago!) until recently consistently show that a timely diagnosis and proper treatment leads to a "normal" life span.

The meds are not the tap on the shoulder at all. It's leaving HIV untreated that should have had you thinking your number was coming up. :o The meds are the thing that leads to longevity. ;)


I hope that our answers are helping you. Many of us (1/3) are diagnosed with HIV when presenting at a hospital. We didn't have the luxury of debating when to start meds. We just know that they are the things that saved our lives and brought our health back. Many of us too, are troubled by thoughts of having to stay adherent to meds, having reminders of being HIV positive, and other troubling thoughts (some people evenh have to worry about keeping access to the meds!!) etc. We know where you're coming from ;) and know that it takes a positive attitude, a zest for life, and ARVs to defeat HIV and the issues (mental and physical) surrounding it. Best wishes to you!!
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline tednlou2

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The OP's doctor is recommending he start.  I don't see the need for anyone on an Internet forum to second guess his doctor especially when treatment guidelines now recommend everyone begin meds, especially those with a cd4 under 500. 

I think a more appropriate response is to discuss why the OP is feeling the way he is about starting and getting him prepared to take his medication and preserve his health, not to delay the inevitable. 

Ted was part of your post cut off?  Seems like you stopped mid sentence.

I'm only second guessing that one off lab now means med time.  If his doctor has already been discussing starting meds at the higher numbers, then I would think the doc just took the opportunity to reinforce that it is better to start.

Calvin, I didn't mean to imply you don't have a great doc.  I was just saying I have one, who isn't very good.  In fact, I was in the doc office, when I wrote that.  That's why my next sentence was cut off.  He came back in the room, and I guess I hit post.  I should have just left my issue with my doc out, as my doc relationship is not the same as yours.

If you're ready, then of course you should do it. 

Offline CalvinC

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I hope that our answers are helping you.

Yes, all of the responses here have been helpful. I have read and reread them all carefully. You are helping me reframe the issue....which is why I came here, because I know that my own feelings about all this are confused.

Funny, I can easily accept that I will always be poz until I die (no, I don't think a cure is in the offing, though a vaccine might be), since hiv is insidious and hides itself so well in body tissues. But taking a pill for it is another thing.

I suppose taking a pill means truly committing to the fact that, yes, I need to begin to manage this disease, whereas up until now it has indeed seemed like a bit of a free ride.

Going off OCD meds -- and I appreciate the sentiment stated by Joe (hey Joe! long time since we met in Montreal!!) and Leatherman that psychological meds should also be thought of as helpful ("friends") -- I don't see as debilitating as going off physiological meds *for me*. Perhaps because I have lived part of my life without such meds, and am not suffering from more serious issues (though initially, my OCD made me near-suicidal, way back when). Testing how life might be without head-meds I see as exploratory, not that I'm tired of taking them.

But, again, I appreciate all this talk because I'm changing my thinking and it's helping me cope. I will see my GP on Thu and report back. A re-test is likely in the works.

Thanks so much.

Offline OneTampa

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frankly, I would tell you that it doesn't matter. ARVs are the only thing that'll control HIV. Whether you get more energy or not really shouldn't matter. Untreated HIV nearly always leads to AIDS and that leads to death. I, for one, would rather be a little tired (which often comes with getting older anyway LOL says the man who just turned 51) than dead. Seeking some miracle feeling out of ARVs is not what you should be seeking. ARVs do not improve your immune system per se. ARVs basic duty is to do nothing but stop HIV from reproducing allowing your immune system to be whatever it was genetically meant to be.

Very good discussion thread here.

And Mikie, I must say that your post just resonates with me especially the part I highlighted in bold italic. Spot on!  Thanks!   :)
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline mike88

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Hi Calvin

I can relate to your story because when I was diagnosed back in May of 2003 I decided not to go on any meds until it was absolutely necessary. I know that as a general rule doctors these day prefer to put newly infected people on meds right away but I had serious concerns about the long term effects of the medications on my body. Five years ago my t cells started dropping and my doctor and I decided that it was time for me to start taking meds. He put me on a regiment of three pills a day Norvir, Reyataz, and Epsicom. The first month on the meds were difficult but eventually my body adjusted and I found that if I took them at night with some food like a bagel or a small sandwich they were easily tolerable. When I had to start taking the meds I was filled with a lot of anxiety and had a real hard time with the psychological effects of having to take pills for the rest of my life. The only way that I overcame this was to get my mind and body focused on different activities. I began studying Tae Kwon Do and eventually earned a Black Belt all while on the meds it was the best thing I ever did. I also went back to school and just finished up a Bachelors Degree program in Business Studies.
So although this time in your life may seem overwhelming taking the meds will stop the virus from doing any more damage to your body and there does come some peace of mind knowing that you have the virus under control.

Offline mitch777

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So although this time in your life may seem overwhelming taking the meds will stop the virus from doing any more damage to your body and there does come some peace of mind knowing that you have the virus under control.
Wisdom. ^
great post Mike! :)
32 years hiv+ (oct. 2013) with a curtsy.

Offline mike88

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Thanks mitch777

I appreciate your feedback !

Offline emeraldize

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Hey Calvin,

I was infected/diagnosed in 2003 and started meds in 2010. Seven years.
Let's consider ourselves lucky, heh?

Lucky that we had a good run meds-free and lucky that there are meds to take for OCD, HIV, anxiety, depression, migraines, diarrhea and more.

When you're in that compliance funk - try to imagine all of the centuries that citizens were soaked in misery of the mind and body.



Offline wolfter

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You've rec'd some great love and support here.  I can't add any better advice than you've already been given. 

Welcome again

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline CalvinC

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Thanks again, all, for a wonderful discussion. I've learned a lot.

I went to see my GP on Thu, and the first thing he said was that he believes that he isn't doing me a favour by continuing to hold off meds. He patiently and exactingly explained (as he always carefully does) why. I asked a number of questions, and he succinctly and with great care and compassion laid out the course of a life on meds and why it's the smart move.

I have to say that I agreed, and agree. I asked (as people here suggested) about more bloodwork (to see if this was a blip), and he said that before going on a trial, of course, that I would get another complete workout. But even if it is a blip, in the end, the best course of action is to go on the trial. I agree. I asked too about tapering my OCD meds, and he said it's a good idea to put that project off for now, to ensure that he can properly monitor any psychological affects of the hiv meds.

I am so fortunate to have such great doctors, and fortunate too to get the kind of support this forum offers. I am really looking forward to going on meds and moving on with the next stage of my life.

Cal

Offline leatherman

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best wishes and good luck with the trial. :D Please make sure to let us know how things go. We'll been here for you  ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

 


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