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Author Topic: Sick And Tired Of HAART  (Read 3149 times)

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Offline Londonguy

  • Member
  • Posts: 104
Sick And Tired Of HAART
« on: June 02, 2008, 04:14:20 PM »
I frequently find myself asking 'what is the point?' nowadays.  What is the point of taking these tablets everyday when I feel like shit and am too tired to do anything?  My body never feels right.  Even on a good day I always feel low on energy.  I've never felt so consistently ill and horrible as I have since starting HAART.  All my combos have kept me undetectable but I keep changing them in the hope that this will be the one, the one that doesn't make me feel like my body is falling to pieces at the age of 23.  And I've only been taking them for 16 months.  Do I really want a lifetime of this shit?  What the hell is my body going to be like 10 years down the line. 

I probably tolerated Sustiva and Kivexa the best.  I only stopped because I kept getting a very minor rash which would come and go even after 4 months, but it wasn't serious at all, and looking back it seems downright frivolous to change on that basis when it's so minor compared to what has come after.  I couldn't tolerate Kaletra at all, just constant diarreah and no energy at all.  Reyataz has boosted my energy a little, but I still feel tired everyday, and over the past few weeks I keep getting muscle aches and pains in my arms legs and lower back.  I still sleep 10-12 hours a day and then feel tired 2 hours after waking up.

In the past 6 months I've had more coughs, colds, aches, pains and bouts of fatigue than I can count.  I feel like my last hope for feeling well again is getting my testosterone tested and finding out that it's low.  How messed up is that?  That I'm actually hoping I have low testosterone?

So again, I have to ask, what the hell is the point?  It's either this, or a shitty immune system and a slow, painful death basically.  This is pretty much the first point since getting HIV over 4 years ago that I actually feel like my life is totally ruined.

Offline BT65

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  • Member
  • Posts: 9,975
Re: Sick And Tired Of HAART
« Reply #1 on: June 02, 2008, 06:28:15 PM »
London, I'm no doctor or psychologist, but to me (based on what I've been through) it sounds like you've got some serious depression going on.  You might want to check into getting a good therapist to discuss all of this with. 

On another point, let me tell you that going totally off HIV meds is much worse than sticking to some combo.  You should probably talk to your doctor about this.  I was curious also-what is your physical activity level like?  Your diet? 

Again, some (or a lot) of it could be attributed to depression.  I'm not trying to diagnose you, just wondering what else is going on to make you feel so hopeless.  A lot of us have had to put up with some kind of side effect or another.  I'm just hoping you get adjusted in some way.  Good luck.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline MarkB

  • Member
  • Posts: 292
Re: Sick And Tired Of HAART
« Reply #2 on: June 02, 2008, 07:33:37 PM »

So again, I have to ask, what the hell is the point?  It's either this, or a shitty immune system and a slow, painful death basically.  This is pretty much the first point since getting HIV over 4 years ago that I actually feel like my life is totally ruined.

Londonguy, I read your post and wept. I wanted to write something, somehow to try and find words, that might reach you. Nothing came: I felt powerless, and have no wisdom to offer you in that dark place. Perhaps there are no wise words that would help at this time. But you have been on these forums longer than I, and you know that there are others here and that what you are going through matters to them, as it does to me. You are not alone.

Aelwyd

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Sick And Tired Of HAART
« Reply #3 on: June 02, 2008, 07:44:39 PM »
Sorry you are feeling so down Londonguy.  But there's a lot of potential sources of fatigue that you might want to check out.  Betty mentioned depression; you mentioned testosterone.  The latter is just one of the things an endocrinologist could look at for you.  Another is diet -- you might want to talk to a nutritionist.

I know it feels like a never ending round of doctor after doctor, specialist after specialist, but fighting does make a difference.

Stay strong
A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline sharkdiver

  • Member
  • Posts: 1,350
Re: Sick And Tired Of HAART
« Reply #4 on: June 02, 2008, 09:18:38 PM »
Let it all out man.

Talk about what you need to talk about.  We are here for you.

Hugs,
Sharkie

Offline darwin

  • Member
  • Posts: 69
Re: Sick And Tired Of HAART
« Reply #5 on: June 02, 2008, 09:41:14 PM »
I probably tolerated Sustiva and Kivexa the best.  I only stopped because I kept getting a very minor rash

Hi Londonguy,

Wow you sound like you are pushing through a tough time.  I hear ya.

Any chance you can go back on Sustiva and Kivexa?  Can you try Truvada?

October 2007 - Chose love/stupidity over protection
23 April - Diagnosed
30 April - CD4: 364/22.1% VL: 2,198
11 July - Started Viramune/Truvada
13 August - Undetectable

Offline Tempeboy

  • Member
  • Posts: 358
  • Like St Francis of Assisi I am wedded to Poverty
Re: Sick And Tired Of HAART
« Reply #6 on: June 02, 2008, 10:30:15 PM »
Hey London,

The only good thing about feeling so crappy is that more often than not the only way is up.  HIV related fatigue is a complicated issue - and often overwhelming.  There is lots that can be done.

This is a useful guide useful - http://positivelife.org.au/factsheet/2

Obviously it shouldn't replace medical advice but it helps to put the issues in perspective.

take care.
Roughly roundabout somewhere in the eighteenth or nineteenth century, Sodomite begat Homosexual out of moral, medical and legal models, bequeathing him Identity, who inbred with Nuclear Family and Industrialism to spawn Homophobia.

Dean Kiley

Offline Robert

  • Member
  • Posts: 2,646
Re: Sick And Tired Of HAART
« Reply #7 on: June 03, 2008, 02:17:13 AM »
HI London.

I know what you mean.  A year and a half into my meds and I was completely wiped out.  I remember one day I was so tired I couldn't even make it inside the house.  I fell asleep on the sidewalk in my backyard.  That was the    final sign that things were not right. I had my testosterone checked, iron levels and thyroid.  It turns out I was bleeding so much from my bm/hemorrhoids that I had iron poor blood.  I have a long history of an active thyroid which causes fatigue and it just got worse.  The testosterone was OK (sure fooled me.  I have absolutely no desire/energy for sex...ouch that really hurts.)  All of this led not just to fatigue but a life-sucking feeling of malaise and ennui and that touched off depression the likes of which I had never seen before. 

I'm now taking iron pills and the thyroid medicine has been increased.  So now I'm good for 5 hours/day max of good, hard labor (digging, hauling, etc).  After that, I have to call it a day. 

I'm on an antidepressant (effexor) which helps some.  But depression is just about a daily occurrence and I just hate it.

Prior to my diagnosis I never had problems with fatigue or depression. 

I agree with you.  It's the HAART. 

But don't let it win.  Don't give in. Keep fighting.  Have your Dr test your thyroid and your iron levels along with the testosterone.  I'm not sure you'll ever get back to where you were before, but it does get better.  Be patient.

Good luck.

robert
« Last Edit: June 03, 2008, 02:20:48 AM by Robert »
..........

Offline darwin

  • Member
  • Posts: 69
Re: Sick And Tired Of HAART
« Reply #8 on: June 05, 2008, 12:01:40 AM »
Hey Londonguy - how are things going, now that it has been a couple days since your post?
October 2007 - Chose love/stupidity over protection
23 April - Diagnosed
30 April - CD4: 364/22.1% VL: 2,198
11 July - Started Viramune/Truvada
13 August - Undetectable

Offline MitchMiller

  • Member
  • Posts: 479
Re: Sick And Tired Of HAART
« Reply #9 on: June 05, 2008, 12:52:11 AM »
Try forcing yourself into a regular vigorous exercise program.  For someone that may not exercise, this may sound ridiculous given your fatigue.  However, exercise can actually exorcise your fatigue (no pun intended).   
I always feel pretty burned out at the end of a 10 hour day behind a desk... but after about 10 or 15 minutes of aerobic exercise, I begin to feel totally energized... sometimes so much that I can't get to sleep early enough for work the next day.  Exercise REALLY helps me cope w/the meds.  By keeping my metabolism up, I feel like my body can process these meds better. 
It may not work for everyone, but if you haven't tried you might want to think about it.

Offline shadowfluid

  • Member
  • Posts: 398
  • Mike
Re: Sick And Tired Of HAART
« Reply #10 on: June 05, 2008, 02:07:23 AM »
I hear ya....even on my new combo.  Fatigue and depression feed each other.  If you know deep down it's the meds causing the fatigue by all means change combos!  For me fatigue is NOT manageable...even on days when I get 8 hours of sleep. Remember, you know your body. 
Jan 08       321/23%  VL 92,000 (very mild shingles)
Feb 1 08    Start Truvada+Viramune
March 08    470/33%  VL 320
mid-May     Start Reyataz/Norvir/Truvada
June 08      571/ 40%     VL   80
August 08   585/ 33%     VL >50
Nov  Lab error!!!!!!!!wah.
Jan 09        535      Undetectable
March 11     756

 


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