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Author Topic: Thinking of stopping treatment for a month or two  (Read 1911 times)

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Offline Londonguy

  • Member
  • Posts: 104
Thinking of stopping treatment for a month or two
« on: June 30, 2008, 04:04:10 PM »
Healthwise I'm probably in a very precarious position to do so, but I feel like I have no other choice.  I simply can not live day in day out feeling like this for years and years.  It's become very obvious to my managers at work that something is wrong with my health and they're pussyfooting around me while accommodating me with easy, less demanding jobs, but I don't know how much longer that can continue.  And outside of work I'm simply exhausted.  I never feel rested, nausea is becoming an ever more constant companion and I'm tired of my muscles aching and my body hurting.  I can't remember what it feels like to wake up refreshed from a nights sleep.

I just want to see if I feel better or not.  To know if it is possible for me to feel well or not.  My last CD4 count was 220 so I realise I'm putting myself at some sort of risk but I feel like it's worth it.  Because it's no life at all feeling like I do right now and seeing 20 or however many years of this stretching out in front of me.  I've brought how I feel up with the doctors time and time again and they never do anything and my last appointment with my doctor was an unmitigated disaster.

This is why I want to stop treatment for a month or two.  Either

1) I feel better and know the treatment is causing it.  Of course it's debatable where I go from here, I guess trying alternative treatment would be the only way forward.  Or

2) I feel exactly the same and I go back on treatment knowing it isn't really making me feel any worse.

As it is nothing is getting sorted and I can't go on with this uncertainty and feeling so ill all the time.  There needs to be some kind of resolution to this and it's becoming obvious it isn't coming from my doctors.

I at once feel like this is something I can't possibly do and something that I must do asap

Offline newt

  • Member
  • Posts: 3,868
  • the one and original newt
Re: Thinking of stopping treatment for a month or two
« Reply #1 on: June 30, 2008, 04:31:00 PM »
Hello

Before you stop, the risks of which you know, I would go sit in clinic till you get a good answer.  Your docs have not really taken this seriously. You are entitled to a second opinion.

Anyhow, telling them you intend to stop should secure immediate attention. The docs won't want you to stop. But then again they won't and can't stop you.

It would be a shame to stop cos your response to treatment has been very good.

It seems to me YOU already know the answer to 1) - it is the treatment, or related to the treatment.

I would:

1. Get off the Kivexa and onto Truvada (subject to baseline kidney health).
2. Try a different PI to Reyataz.
3. Consider using just a boosted PI (or boosted PI + 3TC).
4. Have a heart to heart with a senior nurse.

Among other things.

But mainly I would harass clinic (enlist friends and advocates) til I am satisfied they have exhausted all the options.

Do not discount the likelihood that you will feel worse in the short term on stopping as the virus gets a glee ride without meds.

I agree something's gotta give.

A short break to let the meds wash out your body and then reconsider may be a real option. I am not dead against it, but personally, screaming at clinic for attention/to try something different would be my first option.

You have lots of options. For a start your doc has at his disposal  a vast array of agents to control pain and nausea, plus may other options to explore ARV wise. Not mention a professional training and some humanity to dig out of his filing cabinet and restore to its rightful place in his brain and heart. Though I can see why at this point, more meds and/or more docs may not be your choice.

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

Offline Londonguy

  • Member
  • Posts: 104
Re: Thinking of stopping treatment for a month or two
« Reply #2 on: July 01, 2008, 09:02:54 AM »
Yeah I understand what you're saying, but I don't feel like I have the stomach for a fight with the clinic.  I've never been that sort of person and even less so now with this lack of energy/malaise.  My confidence has taken a battering recently because it's a surprisingly big effort speaking to people I don't know sometimes when my body would rather be laying in bed.

My doctor clearly stated last time I was there that he didn't think the problem was treatment related.  He said if I stopped or switched treatment it wouldn't make any difference and I would feel exactly the same.  Maybe he's right but I need to know.  I can't spend the rest of my life getting up after 10 hours sleep feeling exhausted.

Of course if I were to discuss this with a doctor then I would have to wait  a few weeks to get an appointment.  I feel like just stopping the treatment now and not letting the doctors try and talk me out of it.  I'm worried about resistance of course but something has to change and that means taking a chance.  I know what a doctor would do because I've been there before - they'll order some blood tests be done, I'll come back undetectable and with no obvious kidney or liver problems most likely, and they'll tell me nothing is wrong, case closed.

Offline newt

  • Member
  • Posts: 3,868
  • the one and original newt
Re: Thinking of stopping treatment for a month or two
« Reply #3 on: July 01, 2008, 10:17:52 AM »
Regardless of what you do there will be more tests. IOf you stop your doc will most likely haul you in for tests at 2 weeks, 4 weeks then 2/4 weeks depending on the results.

KVN Forum have some able bods who can advocate/assist
http://www.kvnforum.net/index.html

Or call the i-Base phonline:
http://www.i-base.info/about/phoneline.html

But, like I said, something's gotta give.

Good luck

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

Offline carcrash82

  • Member
  • Posts: 10
Re: Thinking of stopping treatment for a month or two
« Reply #4 on: July 02, 2008, 12:37:22 PM »
LondonGuy, mate. You should give me a call or we can meet up. My meds are fucking up my life big time!!!! Now, i look kinda ill, but i feel even worse on the inside. Constant lack of appetite has made my weight plummet and the poops don't help either. Spontaneous vomiting, mid-sentance has become something of the norm at Uni, luckily, people understand.

I don't wanna shift treatments in case the next is worse and i can't come back to the kaletra/truvada. I tried Kivexa as a trial but was allergic and had to stop immediately.

I have no energy at all. None. I even resorted to pumping my ass full of testosterone. My doc said mine was very low (wondered why eastenders was makin' me blub), so i went bought some. Probably stupid, but i do feel a bit better and it made me slightly hungry which was AMAZING. I usually live off of Choc Ice'.

i've heard of "holidays". what's the danger of a self imposed holiday? is it really that bad, i just want to know how i feel not on these pills. I remeber i used to laugh alot, not it just hurts or brings on the pukes.

ho hum
diagnosed Jan '06
cd4 50 VL 1miliion  2%

May '08 cd4 310 VL undetectable

truvada and kaletra. they work but i'm very tired. Laughin's good though!

Offline Miss Philicia

  • Member
  • Posts: 23,557
  • celebrity poster, faker & poser
Re: Thinking of stopping treatment for a month or two
« Reply #5 on: July 02, 2008, 12:43:55 PM »
5 posts -- no mention of depression, sleep apnea,   or a check of testosertone by the OP.  Maybe it was mentioned in another thread and I missed it.

anyway best of luck
"Iíve slept with enough men to know that Iím not gay"

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,618
  • Diagnosed + 1989
Re: Thinking of stopping treatment for a month or two
« Reply #6 on: July 02, 2008, 08:47:02 PM »
Carcrash, diarrhea is usually the most troublesome side effect of Kaletra.  If it's causing you such distress, you should probably talk to your doctor.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline shadowfluid

  • Member
  • Posts: 398
  • Mike
Re: Thinking of stopping treatment for a month or two
« Reply #7 on: July 02, 2008, 11:07:25 PM »
Yeah I understand what you're saying, but I don't feel like I have the stomach for a fight with the clinic.  I've never been that sort of person and even less so now with this lack of energy/malaise.  My confidence has taken a battering recently because it's a surprisingly big effort speaking to people I don't know sometimes when my body would rather be laying in bed.

My doctor clearly stated last time I was there that he didn't think the problem was treatment related.  He said if I stopped or switched treatment it wouldn't make any difference and I would feel exactly the same.  Maybe he's right but I need to know.  I can't spend the rest of my life getting up after 10 hours sleep feeling exhausted.

Of course if I were to discuss this with a doctor then I would have to wait  a few weeks to get an appointment.  I feel like just stopping the treatment now and not letting the doctors try and talk me out of it.  I'm worried about resistance of course but something has to change and that means taking a chance.  I know what a doctor would do because I've been there before - they'll order some blood tests be done, I'll come back undetectable and with no obvious kidney or liver problems most likely, and they'll tell me nothing is wrong, case closed.

Why can't you go back to Sustiva? You mentioned you tolerated it well, correct?
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

Offline aztecan

  • Member
  • Posts: 5,357
  • 28 years positive, 56 years a pain in the butt
Re: Thinking of stopping treatment for a month or two
« Reply #8 on: July 03, 2008, 10:18:03 AM »
Hey Londonguy,

How long have you been on this regimen? If you mention it, I can't find it.

I have a rule of thumb. I will give any med two months to begin to settle down. If, after two months, I notice that things are becoming more tolerable, then I will give it more time.

But, if, after two months, things are still miserable, I am off to the doctor's office to discuss what avenues to explore next.

I have never taken Kaletra, but I did take the original Saquinavir in 1996. The results were pretty much as you describe, except there was considerable bloating and uncontrollable diarrhea.

After two months and quite a few pairs of trousers, I told my doc it ain't gonna work. She switched me to Crixivan and things settled down immediately.

My point is that you needn't stop meds to begin feeling better, There are many options out there that may work better for you.

So, were it me, I would do as Matt said. Go to the clinic and camp there, if necessary, until you see a doc and get this resolved.

An across the board switch shouldn't cause any resistance problems, should that be your decision. What's more, your quality of life may improve, which is the goal here.

HUGS,

Mark

P.S. That goes for you too Carcrash.
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline shadowfluid

  • Member
  • Posts: 398
  • Mike
Re: Thinking of stopping treatment for a month or two
« Reply #9 on: July 03, 2008, 03:18:31 PM »
Hey Londonguy,

How long have you been on this regimen? If you mention it, I can't find it.

I have a rule of thumb. I will give any med two months to begin to settle down. If, after two months, I notice that things are becoming more tolerable, then I will give it more time.

But, if, after two months, things are still miserable, I am off to the doctor's office to discuss what avenues to explore next.

I have never taken Kaletra, but I did take the original Saquinavir in 1996. The results were pretty much as you describe, except there was considerable bloating and uncontrollable diarrhea.

After two months and quite a few pairs of trousers, I told my doc it ain't gonna work. She switched me to Crixivan and things settled down immediately.

My point is that you needn't stop meds to begin feeling better, There are many options out there that may work better for you.

So, were it me, I would do as Matt said. Go to the clinic and camp there, if necessary, until you see a doc and get this resolved.

An across the board switch shouldn't cause any resistance problems, should that be your decision. What's more, your quality of life may improve, which is the goal here.

HUGS,

Mark

Hey mark,


P.S. That goes for you too Carcrash.


I hate to butt in here but I do know he's on Reyataz/Norvir/Kivexa and has been since the beginning of April.
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

Offline carcrash82

  • Member
  • Posts: 10
Re: Thinking of stopping treatment for a month or two
« Reply #10 on: July 03, 2008, 11:51:09 PM »
Thanks alot for all your info, people. I really thought that i had to wait until the pills stop working and then i move them. My belly is so tender and swolllen/bloated and i've always got the poops.

My doc says kaletra is great 1st line treatment and i'm so scared incase the new pill is worse.

Are your bridges with kaletra completly burned. can you never go back???? I stopped having realtions (physical) with my guy and am drained to due to constant poops. immodium just clog you. short term thing. not good over time.

are there ant reccomendations????????? i'm not resistant to drugs. I take truvada but it seems i wanna kick kaleatra. i'm noticing thinning arms/legs and wide love handles, and the poops are getting worse .......... lipodystrophy? confused and running out of underwear!!

carcrash
diagnosed Jan '06
cd4 50 VL 1miliion  2%

May '08 cd4 310 VL undetectable

truvada and kaletra. they work but i'm very tired. Laughin's good though!

 


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