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Author Topic: What's the big deal with taking meds  (Read 12228 times)

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Offline Cliff

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Re: What's the big deal with taking meds
« Reply #50 on: February 06, 2007, 08:43:51 AM »
When I was on meds, taking them wasn't a big deal.  But now that I've been off meds for a while, I'm not in any rush to get back on them.  I just can't be bothered with taking meds.

Offline woodshere

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Re: What's the big deal with taking meds
« Reply #51 on: February 06, 2007, 10:29:23 AM »
Thanks to everyone for the thoughtful responses.  It is so refreshing to see a thread that doesn't get off the subject and have people getting mad at one another. I am now better able to understand what people who have cd4 counts in the 300's are dealing with.

Unfortunately, the vast majority of med stories I run across are people complaining and comparing side effects.

This is true.  I doubt a thread titled "Started Reyataz, Truvada & Norvir today and things are great"  would get many  responses other than the "good for you" type.  I think many people, myself included, find themselves looking at the worst that can happen in various situations (understand I am speaking of many things not just med side effects) rather than the positive scenarios. As has been stated in several posts everyone reacts differently to their combo.  However maybe some of us who haven't had a bad experience should share our stories more often and offer more reassurance.

I really like the way Queen and others view meds as a way of helping their bodies out in fighting the virus.

Woods
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline alisenjafi

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Re: What's the big deal with taking meds
« Reply #52 on: February 06, 2007, 10:40:18 AM »
I think it is too easy to for many here to think that how it plays out for them, on the battle with HIV is the same- I too am lucky but I am chained to a bottle of pills that one day will cease to work. I had dealt with severe versions of the rash and here 4 years on am still having bizarre dreams and disruptive sleep patterns.

Yes it is better than dying but I don't think anyone should be resting on the laurels. Not everyone is lucky enough to have the one a day routine, we should not forget that. Not everyone one I know with HIV has the same regimen and many I know don't even post here.
And besides the meds there is the monthly routine of having to pick them up, making sure you don't run out .
"You shut your mouth
how can you say
I go about things the wrong way
I am human and I need to be loved
just like everybody else does"
The Smiths

Offline redhotmuslbear

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Re: What's the big deal with taking meds
« Reply #53 on: February 06, 2007, 10:52:59 AM »
Interesting to browse this thread and to see how the medical aspects of meds are seized upon, not the psychological aspect of starting meds.  Having been on a number of HAART combos between 6/98 and 10/05, I can look back and validate the words I often share with newbies to HIV and the world of meds:  popping the pills makes the presence of HIV in one's life all the more real and inescapeable.  During the last sixteen months of being off meds, except for when I've been actively engaged as a research subject and around quarterly lab appointments, it's been incredibly easy to forget that I have HIV--and that bothers me sometimes.  Mind you, when I was on meds I didn't dwell on having HIV and being resigned to a better life through chemistry, except when my body hair fell out 4 months into Crixivan or I got the Viracept squirts, but I had twice-daily reminder to keep me present in the fight.
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline skeebo1969

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Re: What's the big deal with taking meds
« Reply #54 on: February 06, 2007, 11:16:20 AM »
  However maybe some of us who haven't had a bad experience should share our stories more often and offer more reassurance.

I really like the way Queen and others view meds as a way of helping their bodies out in fighting the virus.

Woods

  Well I guess this is my cue then....

    After being diagnosed with HIV one of the things I really wanted was to at least have 2 years before I ever had to take any of the anti virals.  Why?  Because of the horror stories mainly.  I was one of those people who could barely handle Amoxicillan, so in my mind I would be another horror story when it came to taking any of the medications to deal with HIV.  When my viral load hit an all time high of 234,000 I was given the option to start by my doctor... well actually she suggested it, but as long as she told me I still had room to wait I was..  See my Cd4's were still hovering in the 400-600 range, so of course out of fear I chose to wait.  

   In a matter of months my Cd4's crept down to that "You need to start" number of 300, but my viral load was dropping also.  I figured I could hold out longer and really foolishly put the whole thing in the back of my mind.  I got caught up in the whole fiasco of selling my home and moving to another area.  I bought another house went through a few probelms with legal issues and by the time I got back to dealing with HIV six months had passed since my last visit.  When I did finally make it back to  the doctor I was down to 120lbs and feeling very weak most of the day.  I had an ache in my chest and it seemed like every joint in my body hurt.  

  Of course I figured what the labs would be and was not too suprised when my doctor told me my CD4's were at 137.  This time there were no options and not only was I given a script for Atripla, but also one for bactrim.  

  Like Queen said I knew this was going to help me feel better, however I must admit this did little to ease my apprehension on popping that first pill.   I was scared shitless.

  I was one of the fortunate ones though...  A little grogginess after taking the meds during the first week is all I experienced.  My immune system has bounced back and I have added about 30 lbs.

  Now I must admit I am suffering from some depression, but I have my whole life and it is no worse than it ever was.  

  The one thing I am experiencing now is a problem with my liver function.  My doctor is not so sure this is caused by the Atripla.   I have been told to stop taking my bactrim and Ibuprophen for my knee pain to see if my liver function will go back to normal and hopefully it will.  I was tested for Hep C today becaue they want to rule that out...  I just hope the labs I did today will show improvement because I just want to stick to what has been working, which is the Atripla.

 Thomas

    
I'm now more confused.  Your first post said you were diag. 10 years ago and this one says 2.  Did I miss something?

   She was diagnosed with diabetes 2 years ago I think is what she means... 10 years ago with HIV.  

  

  
I despise the song Love is in the Air, you should too.

Offline Ihavehope

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  • Yes, I'm a cry baby, AND WHAT?
Re: What's the big deal with taking meds
« Reply #55 on: February 06, 2007, 11:23:04 AM »
My case worker told me to stay away from websites where people complain about meds because it is only to make me crazy. When I told her of all the things I have read when people take meds she told me that most people who will post on the side effects and treatment questions are people who are suffering from the side effects and most people who are doing well on meds wouldn't really wouldn't have much to say because the side effects are minimal. She had a good point, why would someone going through minimal side effects write good things in this sections. She did warn me that in the beginning it will be a big deal for my body but eventually it will adjust. The case manager had a brother who died in 95' of heart disease who happened to be poz as well. She said that he didn;'t die of HIV but he did died of heart disease because it was a family illness he got. I also compare life without meds hummm I would proabably have a year or two to live with my CD4 counts or an estimated 24 year average life span with meds.. Hmmmm which one do I choose?
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline AustinWesley

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Re: What's the big deal with taking meds
« Reply #56 on: February 06, 2007, 12:20:59 PM »
In answer to your question Wesley...I started out on Truvada and Sustiva.  After taking Bextra ( a non narcotic pain killer)
which they prescribed for a cracked rib and to get me off narcotic pain killers, I contracted Steven Johnson's Syndrome...
a rare and sometimes fatal chemical reaction to medication.  To understand it...just imagine yourself being microwaved cooked
inside and out.  I wasn't suppose to survive....they told David's mother (whom they mistook for my mother) that I wouldn't
live out the week....of course I surprised them did I.  I lost all my toe nails and finger nails...my tongue and the inside of my
mouth peeled....as did my hands, feet, arms and legs but mostly my trunk...my chest and my back.  Ordinarily they transfer you
to a burn unit but Gulfport Memorial Hospital didn't have a burn unit....  Now once you've contracted SJS....you're three or four
times more likely to contract it again....and with that in mind I chose not to return to my med's.....

A few months ago my numbers dropped CD4:200/VL 100,000+  and my doctor pretty much insisted it was time to start
the meds again.  We both agreed that Sustiva was not an option ....so I'm currently taking Truvada/ Noivir / Rayatez....with
Lori tab 10's for pain...Soma...muscle relaxers....and when needed for depression....ativan  I refuse to take anti-depressants on
a daily basis...  Everytime I take my meds I wonder "will I contract SJS again?"  believe me if you've ever been thru it....you don't
think you'll survive it again and when you die from SJS....its usually because your brain is literally cooking...so imagine what thoughts
and outrageous imaginings one might have....its terrifying....more so than dying of AIDS.  And I know because I watched David die
everyday for seven months while he was in hospice.  I know this more than answers your question but I wanted you and others to
see the larger picture insofar as med's and I are concerned.

David,

This scared the shit out of me.    Just prior to my HIV diagnosis I was given a prescription and had a horrible reaction which several felt was the beginning of SJS.    Now, I actually think I was going through that seroconversion at that exact time and that drug just amplified the whole mess.   I quit taking the med w/in a week and a half, but took me almost a month to completely recover.   Nothing like your story, but I am definitely gun shy on the whole drug issue after my own mini ordeal.

I wanted to thank the rest of you for sharing your experiences and clarifying some of your own views.   

I'm still paranoid I'll be the one who has all the horrible symptoms.   There are those extreme cases which catch my attention and I think to me that wouldn't be worth living, not with all that.

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline ademas

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Re: What's the big deal with taking meds
« Reply #57 on: February 06, 2007, 12:26:10 PM »
I was told I had no option but to start something (it was '94, and my cd4 was 79, ratio 4%), and I was fortunate to qualify for a crixivan/azt clinical trial.

I had seen enough death at that point that popping a few pills 3x a day seemed like a very small price to pay for a little bit of hope.

For that first year or so, I had no idea if I was taking both meds or a placebo, but my cd4 increased ever-so-slowly, and I felt good, so I tried not to think about it too much.  In the end, it turned out I was one of the lucky 1/3 of the trial participants who was actually receiving both medications.

It was probably 5 years later that I noticed the effects of lipodystrophy.  I caught it early, and after a very brief switch to Norvir (which my body didn't tolerate at all), I was able to switch to Sustiva, and I'm on Sustiva/Combivir to this day.  The lipodystrophy stopped progressing as soon as I stopped the PI's.

The meds have worked well for me.  My last labs were the best I have ever had (cd4 616, ratio 26%), and aside from the lipodystrophy, I've been fortunate to have very few side effects.

That said...I have problems with psoriasis, rheumatoid arthritis, psoriatic arthritis, dupuytren's contracture in my left hand, and peripheral neuropathy.  I can't say for certain, but I'm pretty sure all of these conditions (except the neuropathy) are related to immune system reconstitution syndrome.  The neuropathy could be either HIV or AZT-related.  (I'm on Lyrica for the neuropathy now, and it's working well.)  I had no sign of any of these conditions until my CD4's and percentage had increased substantially, and I was well out of the "danger zone".  As my immune system has gotten stronger, these conditions have gotten worse.

I agree with Boo that "the only person who can decide when to go on meds is you", particularly since compliance is so important once you start, but I also think it's very important to start meds before your immune system is critically compromised.  I certainly would have (had I the option).

Offline ACinKC

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Re: What's the big deal with taking meds
« Reply #58 on: February 06, 2007, 12:32:56 PM »
Just to veer off topic for a smidge.... Alisen, darling whatEVER are you doing to that poor monkey in your avatar?
LIFE is not a race to the grave with the intention of arriving safely
in a pretty and well-preserved body, but, rather to skid in broadside,
thoroughly used up, totally worn out, and loudly proclaiming--WOW! WHAT A
RIDE!!!

Offline mjmel

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Re: What's the big deal with taking meds
« Reply #59 on: February 06, 2007, 04:13:09 PM »
Just to veer off topic for a smidge.... Alisen, darling whatEVER are you doing to that poor monkey in your avatar?
ACinKC I am fairly new to this forum. Just want to say that whoever you are, you are a riot! Poor Alisen! ha! ha! ha! ha! ha!
I needed a good, hard laugh to shake these winter blues away.  :D

Offline Ihavehope

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  • Yes, I'm a cry baby, AND WHAT?
Re: What's the big deal with taking meds
« Reply #60 on: February 06, 2007, 04:18:27 PM »
ACinKC I am fairly new to this forum. Just want to say that whoever you are, you are a riot! Poor Alisen! ha! ha! ha! ha! ha!
I needed a good, hard laugh to shake these winter blues away.  :D

Yea AC is a real riot, he brightens up my day sometimes just by being himself. I love guys with ADHD, they have no clue sometimes how funny they are. There are many people here you will enjoy reading their response to. I am fairly new here as well and love it here. This is like part of my home now. Welcome
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline SouthSam7

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Re: What's the big deal with taking meds
« Reply #61 on: February 06, 2007, 04:59:05 PM »
Interesting point, and of course you're right; we don't have any choice.  But what about those of us who are told we need meds and we have to take them, but can't afford them?  I find time to worry about that!  I'm sick of people in the US and UK acting like the cost problem is only in Africa!  People die every day in this country because they can't get their meds. 

The statistics are skewed because you never see on any kind of study "number of patients who died as a result of not being able to afford meds".  They just classify it as an adherence problem and blame the patient.  I just lost my adap coverage and can't afford my meds so I'm out of patience today. 

Offline Bizmark33

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Re: What's the big deal with taking meds
« Reply #62 on: February 06, 2007, 05:30:02 PM »
I, like many on here, was scared to start treatments. Everything that it meant. No, it wouldn't change the fact that I was indeed HIV positive, but it would mean that I was now on medication, probably for life, and except for the occasional antibiotic or pain pill in my life, I had never been a "patient".
     I decided, along with my DR, to start treatment early. I had only been infected, by my estimates, about 7 months. My Viral load was in th 65,000 range, and my CD4 was hovering around 500.
     That was back in october. I obsessed over every pill. Took them diligently. It reminded me that I was HIV positve. It reminded me that I was something that most other people were not.
     SLowly, that began to fade. I don't know at what point. Heck, I haven't even been on this board for a couple months, whereas I WAS on here every day at one point. It (the disease) ruled my life.
    No longer does it. My last labs showed undetectible virus (<50), and CD4 of around 650. So I guess I am doing pretty good. Do I feel great? No. I am glad to be alive. I got REALLY pissed today when I got home and realized the pharmacy had screwed up and gave me Sistuva 200mg capsules, rather than my prescription dose of 600mg pills. They apologized after I ripped them a new one, and gave me back my $30 co-pay. I was really upset and expainled that I could develope drug resistance at that dose.
     Anyhow, like I said, I TRY really hard anymore not to obsess about it. I do get depressed, and feel tired much of the time. It is difficult to get going, especially with it having been so cold out around here. Hopefully the spring will see a goodbye to the winter blues. I can't wait. I need to, and desperatly want to get into the gym.

Glad to be back on here.
~Biz

Offline Blixer

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Re: What's the big deal with taking meds
« Reply #63 on: February 06, 2007, 07:27:38 PM »
Wow! So much information in this thread and so many differing views.  I guess it really does show you how much of a personal decision starting meds it.

Wesley,  I started on sustiva and epzicom.  I was in a double blinded study so initially I didn't know what I was on.  When I stopped the meds due to myalgia and they wanted to restart, I refused to remain in the study unless I knew exactly what I was on.  I could have been on truvada.  But I knew that restarting epzicom (because of the abacavir) could be dangerous.  You talk about scared... I was scared at that point.  But the doctor agreed without any dissention and they unblinded the study.  They switched out the abacavir for videx EC and so for the past 9 months I've been on sustiva, epivir, and Videx EC.  After restarting the meds I have had no real isues to speak of.  And those two rough weeks are nothing but a distant memory now.  I think the lesson I learned in all of this was not to be afraid of the meds.  Yes, I had a short "bad experience."  But I had educated myself before starting meds and I had selected a very good doctor.  During those few days when things were roughest I was in daily contact with my doctor. He would even call to see how I was doing.  But you know, they changed my hypertension medication just before going on the HIV meds and I had more of an overal issue with that change than going on the HIV meds.  I actually had such a reaction to the new hypertension med that I had to stop it and go back to my original one.  So nothing is a sure thing.  But the good news is that there are so many combos that they can find one that works and is tolerable in almost all cases, particularly if you are starting out with a new first line regimine.  Ironically, the Videx EC that I'm on is one of the older meds and is known for some real issues with some people.  Pancreatitis and perpheral neuropathy are two issues that crop up with some.  But I've had no problems at all. I know what to watch for and if I ever have any of the symptoms, I know to call the doctor and get things changed proto.

In reference to the 24 years expectancy after starting meds, that wasn't just with individuals starting new first line regimines today. That included a number of individuals who suffered through some of the early drugs. Another recent study mentioned something over 30 years in terms of current life expectancy and talked about that increasing as new drugs come on the market.  Many experts today say that for individuals starting HAART, if they start before significant immune system damage is done, they can count on a normal or near normal life expectancy.   My doctor told me that postponing starting treatment wouldn't really gain me anything.  He said that if I started HAART and was compliant and took care of myself that I would most likely  die from something unrelated to HIV.  Of course, I'm over 40 now so I picked this thing up a little later in life.
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline koi1

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  • Posts: 713
Re: What's the big deal with taking meds
« Reply #64 on: February 06, 2007, 08:46:22 PM »
Hey W.

I think that it is easy to say "what's the big deal?" when you have had a good experience with meds. However there are many people on this website who have had a hard time with them. Deciding to take meds is definitely not a light matter because for many once they start it is a lifelong commitment.

But then I also recall if I am correct that you have not known anyone who has suffered through this disease, and that despite your age, the whole misery of death before HAART is a very foreign thing for you.

I commend you for starting this thread to get a better understanding, but starting meds is a big deal. I started them a month ago, and I thought things were going alright with minor side effects. Until this week-end. I got three horrible panic attacks. I literally wanted to crawl out of my skin and jump out the window. I live on the third floor so with my luck I would just have ended up paralyzed. But on a serious note. I was ready to check into the E.R. Guess what, this is a side effect of the meds I am on. So I really have to watch what I eat, when I eat it, how much of it I eat...

On the other hand I seem to be doing well on the meds as far as my labs go. However the threat of another panic attack is real. I thought people were overreacting when they talked of panic attacks, now I know differently. I had never had a panic attack in my life.

The point I am getting to is that as patients, we have to keep insisting on research. Drugs must be found with less and less side effects, until the magical words are heard that a true cure has been found for this awful disease. If we just keep taking the pills without noting that there are side effects, and the day to day struggle of taking these ultimately toxic concoctions,  nothing to improve our lives will be done.

Rob
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline red_Dragon888

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Re: What's the big deal with taking meds
« Reply #65 on: February 06, 2007, 09:36:15 PM »
 you have a very interesting point of view, but I fear meds for the many that died from AZT.  Luckily the meds today are better researched and tested.
http://www.youtube.com/watch?feature=player_embedded&v=I3ba3lnFHik

“Neither look forward where there is doubt nor backward where there is regret. Look inward and ask not if there is anything o

Offline Jeffreyj

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Re: What's the big deal with taking meds
« Reply #66 on: February 06, 2007, 10:45:40 PM »
Darn RED, your post made my Survivor Guilt kick in, as I was one of the lucky ones who survived that nasty AZT!  I know what you mean though   :)
Positive since 1985

Offline joemutt

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Re: What's the big deal with taking meds
« Reply #67 on: February 06, 2007, 10:58:21 PM »
you have a very interesting point of view, but I fear meds for the many that died from AZT.  Luckily the meds today are better researched and tested.

I took azt for 10 years without major problems. I think your fear comes from a lack of knowledge.
« Last Edit: February 07, 2007, 12:09:17 AM by joemutt »

Offline aztecan

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Re: What's the big deal with taking meds
« Reply #68 on: February 06, 2007, 11:30:25 PM »
Rob,

You make a very good point, actually, a couple of them. I know I have been very lucky to last nearly 11 years on some of the meds I take - including the much-maligned AZT - without much in the way of side effects.

That said, it is critical for us, as people living with the bug and the drugs to fight the bug, to let the medical profession know when things happen.

The other side of that coin, and perhaps why I have a different view of the meds, is the other point you made regarding the pre-cocktail era.

Back in 1995, if my doc told me that dipping Lawrence Welk records in battery acid and sticking them up my butt like a suppository would help, I probably would have tried it.

No matter how scared people are of the meds, I don't know that it can be compared to the panic people felt before there were any.

People had their blood drained, heated to kill the virus and then put back into their bodies. Others turned to Chinese herbal medicine, accupuncture, alpha interferon, mega doses of vitamins and minerals, spirulina cleansing drinks, well, you get the idea.

Much of the above must sound insane to people today. But, back in those days, any hope was better than no hope.

So, while I understand some people have had a rough time with the meds and are, therefore, a bit more hesitant, I just don't understand the meds phobia some who have never taken them have.

I guess it can be chalked up to having different life experiences.

Oh, and by the way Jeff, I am very happy you survived those nasty AZT days. My doc still carries one of the pill boxes from back then, but the alarm no longer works.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Blixer

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Re: What's the big deal with taking meds
« Reply #69 on: February 06, 2007, 11:53:02 PM »
I took azt for 10 years without major problems. I think your fear comes from a lack of knowledge.

Joe, I think you hit it right on the head.  Fear comes from a lack of knowledge.

When I first found out I was headed for meds fast (less than 3 months after diagnosis) I was scared big time. I didn't understand.  I did lots of reading.  Then I was "invited" to join a study.  I ready all of the potential side effects and I thought the virus has to be better than this.  This stuff looks like it will kill you.  Then I talked with a respected doctor who had a better grasp of things than I did.  I found out that even though there probably will be some side effects initially, they should be short lived or the meds can be changed.  Knowledge made my fear dissipate.  And when I did have some early issue, knowledge once again came to the rescue.

BTW, I lost my best friend and first BF from high school to aids because there was no AZT.  He never had a chance.  Glad you you got the chance!
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline David_CA

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Re: What's the big deal with taking meds
« Reply #70 on: February 07, 2007, 01:05:39 AM »
For me, it is a big deal taking meds.  It's what I do to keep this virus in check.  It's what I do to keep those nasty OI's away.  That is a big deal.  My CD4's were 285 @ 22%.  I shouldn't have gotten sick, but I did.  A week in the hospital with PCP and feeling bad for months before ("it's just a cold" I told myself) was all it took to convince me to start meds.  Actually, I was planning on starting anyway, but the meds just sped things up by a week.  It's a big deal 'cause, hopefully, I won't be getting sick any time soon.  Like Queen, I was looking forward to starting treatment.

Sometimes I think we'd be better off not knowing what the possible side effects are prior to taking the meds.  The dread and fear of the meds itself isn't healthy.  I wonder how many of us don't take meds 'til the last minute, 'til we're really sick because of what we've read or heard about somebody else's bad reactions.  Honestly, besides the funky dreams, I can't tell I'm taking an Atripla or an aspirin.  I know I'm fortunate, but so are a lot of others.  If one's viral load is consistently rising and one's CD4's are consistently dropping, honestly, what's the benefit to waiting a few more months 'til one hits some magic number under 300?  The meds just make it that much easier to get back to a healthy range.

I'd have a really hard time sitting by watching a friend waste away from not taking meds, as others have mentioned above.  I'll be damned if I'm going to sit around and watch it happen to me.  Exercise, eating (mostly) well, cutting down on alcohol... trying to generally live a healthier live plus taking my meds is what I do for me. 
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline Queen Tokelove

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Re: What's the big deal with taking meds
« Reply #71 on: February 07, 2007, 01:18:42 AM »
Wesley,

Thomas had it right... I have been poz 10 years this year and it has been 2 years for the diabetes. I should've been more clear.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline DanielMark

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Re: What's the big deal with taking meds
« Reply #72 on: February 07, 2007, 06:12:24 AM »
"Sometimes I think we'd be better off not knowing what the possible side effects are prior to taking the meds.  The dread and fear of the meds itself isn't healthy."

I completely agree, David.

I put off starting meds from 1988 till 2002 when I became hijacked by the big V. Up till then I felt fine. I could see no good reason to pop pills when I saw no outward indication that I needed to. Sure I had bouts of shingles now and then, but I wasn't breaking out in KS or going down with PCP. I thought the doctor was nuts wanting to burden me with pills. Little did I know.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline budndallastx

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Re: What's the big deal with taking meds
« Reply #73 on: February 07, 2007, 06:56:08 AM »
My decision was based upon the CD4 counts.  I had read so much about the side effects of the meds that it literally scared me from starting them.  The nurse finally told me to stay of the net and do some solid research which is how I stumbled across "The Body" and this site.  After learning so much I decided it was time to take meds since I didn't want to die yet. 

My first meds were Sustiva / Epzicom which I started the day before Thanksgiving.  Luckily I had not made any plans and suffered through the first couple of days of "getting used" to the meds.  Surprisingly, the effects were unlike the horror stories you continue to read about so I was pleased.  Unfortunately, I developed a reaction to the Abacavir and ended up in the hospital five days later thanks to what we thought was the Bactrim at the time.

I am now on Truvada and it's been an easy ride.  Five weeks later, everything is under control with a VL that is <50.  I know it's  a personal decision since I had to do this for me.  I didn't have a decent support system here and have been dealing with this on my own.  The only people who even know about me being positive are my health care providers and my next door neighbors.  The routine right now is now different for me since I have to take meds for blood pressure and for Cholesterol.  Add to the mix, I am a Type 1 diabetic for the past 25 years, this is just another pill to pop for the time being. 

I still have fears of longterm side effects but am hopeful we'll get a new round of meds appearing this year giving us all more options.  In the meanwhile, I admire each of you and have learned so much from all.

Thanks for sharing.

Tom
I
Meds since: 11/20/2006
Sustiva / Truvada
12/08/2008 VL:<48 CD4 622 (38%)   
9/8/2008 VL:<48 CD4 573 (30%)
5/2008 VL:<48 CD4 464 (30%)
1/2008  VL: <50  CD4 425(28%)
9/2007   VL: <50  CD4 465 (27%)
6/2007   VL: <50   CD4 443 (26%)
3/2007  VL: <50   CD4 385 (25%)
12/2006 - VL: <50   CD4: 384 (25%)
11/2006 - VL:  22K  CD4: 208 (18%)

Offline poet

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Re: What's the big deal with taking meds
« Reply #74 on: February 07, 2007, 07:42:42 AM »
Let's go back to 1986.  The doctors were all telling 'us' to get on AZT or they wouldn't deal with us (in NYC).  The only numbers we had were cd4's and cd8's and, from what we thought we knew then, 250 was the point of starting meds.  So my logic was to wait until my numbers got there: why take something before you absolutely need to do so?  Why, in my thinking, waste what meds could do for me until I absolutely needed them?  And, in my case, it paid off because AZT alone did not work for most people and they died.  I was able to stall until the cocktail arrived.  Pure luck and stubborness. 

What I learned from the decade of dying is to ask for only one thing of someone: that he or she thinks about what he or she is or is not doing (regarding meds, which ones, which 'alternatives').  Respect a person for making his or her choices.   It's very rough to ask.  We should make sure that our personal opinion gets into the mix, but not to the point that the person is hearing everyone else's and not his or her own thoughts.  It's  true with people who have cancer, the choice to start a treatment or not, the choice between chemo and radiation.

Yes, it can and will be argued that now we know much more, have better drugs, most people do well on them.  But we have to still respect the concerns of others, that they might be the minority to have side effects, that their particular side effects would force them to change how they live, that we, today, seem to see things in a good light, but still can't absolutely project the future for the person starting drugs today 30, 40, 50 years of taking drugs later.  And if you are 20 something today, that's still a problem.  I suspect, Woods, that some of this answers what the big (or small) deal is with taking meds.  Best, Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline redhotmuslbear

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Re: What's the big deal with taking meds
« Reply #75 on: February 07, 2007, 09:28:22 AM »
Darn RED, your post made my Survivor Guilt kick in, as I was one of the lucky ones who survived that nasty AZT!  I know what you mean though   :)

At the risk of going OT..... Survivors' Angst is highly over-rated, at least for me.  Through the arrogance, ignorance and fear of young adulthood, my bugs and I managed to duck the brutally high doses of AZT in the early years; and my immune system got me to the age of PIs before the truth of my serostatus was unmasked.  Throughout those years, dozens of wonderful HIV+ men and women entered my life and imparted innumerable lessons about living with the disease.  So, when I had to deal with my HIV in 1998, I was armed with all of that collective wisdom and attitude--like having the balls to stop Crixivan on my own four months later when my body hair fell out--and my primary physician at the time never doubted my capacity for staying involved in my care and challenging  him and others about their notions of appropriate care.  The ongoing stint off meds with great numbers just makes me more happy that the two horny 19 year-olds who became my parents passed on some good genes.
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline woodshere

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Re: What's the big deal with taking meds
« Reply #76 on: February 07, 2007, 10:30:31 AM »

I think that it is easy to say "what's the big deal?" when you have had a good experience with meds. However there are many people on this website who have had a hard time with them. Deciding to take meds is definitely not a light matter because for many once they start it is a lifelong commitment.

But then I also recall if I am correct that you have not known anyone who has suffered through this disease, and that despite your age, the whole misery of death before HAART is a very foreign thing for you.


Rob,
I have reviewed every post I have made and no where have I indicated who I have known that may have had AIDS or any experiences I may have had prior to HAART.  Your assumption is wrong and I find very condescending in its tone. For your information in the late 80's I was a Hospice volunteer in a Kentucky community of about 25,000.  The agency could not find volunteers to work with AIDS patients and so I volunteered.  With one patient my visits went from enjoyable conversation and TV watching to me just sitting by his bed while he just lie there in a shell of who he once was.  When he died there were about 10 people at the funeral, 3 of us were from hospice.  So the misery is not foreign to me. 
For some taking meds is a big deal, some view it as an inconvenient necessity and others it is just part of life, no big deal.  There is no right way for one to feel regarding meds.  In my posts in this thread I have been very careful to ask questions that would not make someone feel that their worry or stress about starting or taking meds were ridiculous or unjustified feelings.  I have tried to learn and be respectful of others, I only wish you would have been in your response directed to me.

Woods
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline shepsmom

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Re: What's the big deal with taking meds
« Reply #77 on: February 07, 2007, 10:36:34 AM »
For me it was an admission that I had AIDS.  I never liked to actually come out and say it. I would always find ways to skirt the issue and call "it" my sickness or disease or even problem. never saying I HAVE AIDS. By taking pills its like an admission that something IS wrong with me.

Offline poet

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Re: What's the big deal with taking meds
« Reply #78 on: February 07, 2007, 11:47:36 AM »
I am going to keep injecting this when I see it because, for whatever reason, the concept of a forum, of a place to post opinions, get into discussions, etc., makes these shifts into the personal and, speaking for myself, I don't want to lose more posters here because of it.  When you really, really have this urge to speak to someone directly, please use p.m.  Use it to say something nice, as in thanking someone directly for starting a thread, for making a post which has made you stop and think.  If you have to, use it as well to raise a carefully worded question, as in 'I read your post and wondered if you could give us via a post some more perspective so that we could understand where it was coming from?'  Or generalise things, post, 'I think that this is a great thread,' or 'I wonder if...' without addressing someone directly.  We want and need to hear what each of us is thinking about things, but we are less likely to hear each voice if each time it is raised it is seemingly shot down.  Thanks, Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline AustinWesley

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Re: What's the big deal with taking meds
« Reply #79 on: February 07, 2007, 12:35:19 PM »
I'm as guilty if not more for derailing topics Win.   I kind of stopped reading this one cause personally I felt many of the stories were just making me freak out more ;)

For those who think this is just some ancient history, tell that to the loved ones I've met of the 19 and 25 yr olds died last year. 

I'm sorry for what happened in the past, but I can't personally change it or relate to it; however, I don't think that discounts my own experiences or views either.   I also don't think that everything is just great now, better I guess.  I don't have the historical perspective, but I'm attempting to learn.   

There seems to be a lot of disconnect here and I'm sure I am equally part of it.   

I think we can all agree that taking meds is a big deal.   
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline woodshere

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Re: What's the big deal with taking meds
« Reply #80 on: February 07, 2007, 02:00:45 PM »
I think we can all agree that taking meds is a big deal.   

My intent for this thread was to better help me understand why people stress and dread starting meds.  To which I do have a better understanding. 

Thanks to the responses I am fully aware of the struggles and worries many have in beginning their meds.  But to make a statement that says ....we all can agree.... I feel in a way discounts the fact that for some starting meds isn't a big deal.  It only points out that while we all might be HIV+ we each deal with the virus in completely different ways.
 
Woods
« Last Edit: February 07, 2007, 02:02:40 PM by woodshere »
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline alisenjafi

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Re: What's the big deal with taking meds
« Reply #81 on: February 07, 2007, 07:41:42 PM »
Just to veer off topic for a smidge.... Alisen, darling whatEVER are you doing to that poor monkey in your avatar?
Why trying to get your attention cowboy!
Did you think only females go ape over hairy astronauts? Btw i love it when yuo call me darling :-*

Quote
mjmel
Poor Alisen!
Don't you mean poor monkey?
Johnny
« Last Edit: February 07, 2007, 07:51:29 PM by alisenjafi »
"You shut your mouth
how can you say
I go about things the wrong way
I am human and I need to be loved
just like everybody else does"
The Smiths

Offline megasept

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The big deal with taking meds; Beyond "Biting the Bullet."
« Reply #82 on: February 07, 2007, 07:50:45 PM »
Woods: You're an HIV newbie which makes your question all the more relevant for others.

There are several different factors behind making a "big deal about taking meds". They aren't all at play all the time. Here they are in no particular order:

1) In the 80s patients were treated improperly, causing massive side-effects, and then death (huge prescribed doses of AZT comes to mind). Yeah, maybe the treatment killed them rather than late-stage disease. A source of fear, and a sad learning curve.

2) Affluent societies breed more crybabies. Treatment adherence in Sub-Saharan Africa is probably greater, than say, in California. Whining while being adherent does little harm unless you're enrolled in Charm School. Good Patients speak up and take responsibility for treatment. Lying to a doctor does a patient little good.

2) The newer combos actually give people  :o  worse side effects due to more/different drugs involved then 2 (my old treatment) or 3 drugs only. So a lot of complaints are not exaggerated. These are the current treatments of choice. Some side effects diminish--but not always for everyone--and chronic side effects may be health-threatening.

3) Having the runs, among other side effects, while working, is not just painful and embarrassing, but threatens medical privacy. Staying home when possible, is preferable to any workplace nightmare. Not everyone can afford that.

4) It's often not just about "delaying treatment 2-3 mos". as someone wrote (not faulting their example). I have been treated only 5 of 16+ years of infection at the suggestion of my Specialist. Non-treatment, like treatment, is a careful medical decision, and should never be determined by and exaggerated factor of side effects. I don't want to discourage anyone from treatment for fickle or secondary reasons.

5) Many physicians do a poor job in tackling side-effects (like watching contraindications when treating OIs), and so the patients on this Site do a damn good job of sharing info on these matters (they really don't strike me as crybabies, for the most part) with one another. As long as the info is accurate I don't care whether folks whine or "bite the bullet." 

6) Does this discussion scare some away from treatment? Probably. The antidote to misunderstood education is probably more education. Most folks reading here now are non-members (which is fine) so we'll never really know who dropped in and left when.

So, those are my opinions. A mish-mash of observations on an important subject that can cause misunderstandings and poor or half-hearted decisions. Thanks for your crystal-clear question. I didn't find it flippant.   8) -megasept

Offline koi1

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Re: What's the big deal with taking meds
« Reply #83 on: February 07, 2007, 08:21:43 PM »
Woods,

I am sorry if I have mistaken you for someone else. The guy I am referring to is someone from Texas,or some place like that,  who belongs to some gay friendly church... who I had an exchange with about the "old days of HIV." If it was not you, although I remember your picture being associated with it before you changed it. You told me that you had basically (and I'm sure it was you) had had a sheltered existence in your rural town, and said that you could not honestly identify with me, because the era of peole dying of HIV never became personal to you. It all started with an argument on how much homo hating churches have contributed to the AIDS epidemic, which you were not in agreement with. I am sorry to say we are still on different sides of the issue. I think your posts on meds are anything but neutral, and I was simply pointing out that people can have bad experiences with drugs, even today. And that we must continue to make sure more research goes on to find less toxic alternatives. That's all.

Starting meds is scarier for some than others, and it doesn't hurt to acknowledge it, as this is the first step to successfully deal with the ordeal. Although,  if we believed all the side effects listed would happen to us, we would never take them, knowledge of the side effects to me is power. I would rather know what to expect. Because I am in the minority of people who end up with allergies to meds, it is best for me to be prepared, and know how to handle the possibilities. This info really helped me this week-end.

rob
« Last Edit: February 07, 2007, 08:53:16 PM by koi1 »
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline Lis

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Re: What's the big deal with taking meds
« Reply #84 on: February 07, 2007, 08:24:04 PM »
good topic..

It wasn't the starting the meds i feared.. it was what it did to me once i got there.. i guess I'm weird, i didn't get the huge CD4 count, i am still below 200 after 3 years...  I have vomit, shit, and the feeling of being wiped out every .. day...  I'm happy for you.. and I wish you well!!

lisbeth  

ps... poz in 86  no meds till 2003
poz 1986....

Offline AlanBama

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Re: What's the big deal with taking meds
« Reply #85 on: February 07, 2007, 08:30:59 PM »

The other side of that coin, and perhaps why I have a different view of the meds, is the other point you made regarding the pre-cocktail era.

Back in 1995, if my doc told me that dipping Lawrence Welk records in battery acid and sticking them up my butt like a suppository would help, I probably would have tried it.

No matter how scared people are of the meds, I don't know that it can be compared to the panic people felt before there were any.

People had their blood drained, heated to kill the virus and then put back into their bodies. Others turned to Chinese herbal medicine, accupuncture, alpha interferon, mega doses of vitamins and minerals, spirulina cleansing drinks, well, you get the idea.

Much of the above must sound insane to people today. But, back in those days, any hope was better than no hope.

So, while I understand some people have had a rough time with the meds and are, therefore, a bit more hesitant, I just don't understand the meds phobia some who have never taken them have.

I guess it can be chalked up to having different life experiences.


Mark, you did a great job of capturing my feelings on this whole issue.
I personally don't understand all the angst about taking a few pills, because I lived through those days you described.   We would have done anything (and did!).

As you say, it's different life experiences that make for so many different viewpoints.   

Hugs,
Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline StrongGuy

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Re: What's the big deal with taking meds
« Reply #86 on: February 07, 2007, 09:28:25 PM »
I think this has more to do with how much "fear" or "anxiety" one has about starting or adhering that defines it as "big deal" or not.

From my personal perspective I started about 6 years ago and I had a combo that gave me a few sides (mainly an hour of nausea) and I learned to manage it with diet. I've since switched to an easier combo and the sides are non-existent. I had some fear, but I had no choice at the time and while I would say starting was a "big deal," my daily regiment today is not.

I do agree with what one commenter was told above by his doctor about reading too much about sides when first starting. I would NEVER tell anyone newly diagnosed with little understanding of HIV and the meds to read threads about sides and scare the bejeezus out of them. Without the ability to decipher someone who may be highly treatement experienced - or just plain against taking the meds - or bad with adherence - or many other person-specific scenarios - you could think that what is happening to them will automatically happen to you and freak ya out.

What happens will happen regardless, and fear will just make things worse.

Fact of the matter sides and meds are a LOT better than they were in the past. Not perfect, but if you gotta take the plunge be vigilant and not naive about it, but also be realistic and listen to your doctor.

We all deal in our own ways...



"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

 


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