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Author Topic: Meds, How long have you been on them, are new ones much less toxic?  (Read 1703 times)

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Offline bimazek

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  • Posts: 781
Meds, How long have you been on them, are new ones much less toxic?  Please post.

I feel like that when i start meds it will start a count down to when they will toxically effect my body.  Many say that they are much much better now, and i see and talk to many friends who look great and look fine and normal. 

can one realistically be on these meds for twenty years.

perhaps someone who as been on them since 1995 and doing well or before can comment


Offline Christine

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  • Posts: 1,069
Re: Meds, How long have you been on them, are new ones much less toxic?
« Reply #1 on: June 17, 2007, 02:22:41 PM »
I have been on meds since '93. Through out my entire journey on HAART, other meds needed for side effects, and hiv related problems, some meds have been easily tolerated (even in the early days), and some have been horrible.

I think overall, meds now have less side effects, but it really seems to be a crap shoot. It just depends on how your body responds to the medication.

I think you can be on the meds for 20 years, but the question is how well you can tolerate them for years. And if one can not tolerate a certain drug, will you have other medication options to be able to switch to?


edited for grammar...today is a foggy aids day...
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline Dachshund

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Re: Meds, How long have you been on them, are new ones much less toxic?
« Reply #2 on: June 17, 2007, 02:44:24 PM »
All one can do is offer you anecdotal evidence but no guarantees. I have been on meds of one kind or another since 1992. AZT, Viracept and now Sustiva have all been no goes for me. I tolerate Kaletra and have good numbers but my meds are not without some side effects. Fifteen years on HIV meds and anticipating twenty.

Offline David_CA

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  • Posts: 3,246
  • Joined: March 2006
Re: Meds, How long have you been on them, are new ones much less toxic?
« Reply #3 on: June 17, 2007, 02:59:33 PM »
I've been on meds since Dec 1, 2006.  I take Atripla and don't seem to have any 'real' effects from it (yet?).  I did have the vivid dreams.  They weren't that bad, but the problem was they were too involved and I didn't want to wake up in the morning.  I switched to taking it first thing in the morning, which works much better for me.  As Christine said, it pretty much depends on each person's body.  My liver and kidney functions are fine; my triglycerides and cholesterol are good, and my t-cells are increasing.  If I could just get that damned viral load undetectable, I'd be a lot happier.  Most importantly, to me, is that I feel good.  I haven't felt physically this good in a long time.  How long will it (I) last?  Who knows, but for now, things are good.

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 aztecan

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  • Posts: 5,512
  • 31 years positive, 59 years a pain in the butt
Re: Meds, How long have you been on them, are new ones much less toxic?
« Reply #4 on: June 17, 2007, 03:25:28 PM »
Well, I started meds in March 1996, switched from Saquinavir to Crixivan in May 1996 after living with intolerable side effects for two months and stuck with Crixivan, AZT and Epivir (3TC) for more than a decade. After 11 years, I switched from Crixivan to Sustiva because of lipohypertrophy, not drug resistance.

I've been on Sustiva for six weeks now, I'll let you know if its going to be a long-term thing or not after a few months and I determine whether I can live with the side effects or not. Right now, I am just learning what Sustiva does to me and how I can best cope with it. It is a very individual thing.

I continue to take AZT and Epivir, but in the form of Combivir, so I'm have more than 11 years on those drugs to date.

Have I had side effects, yep. I mentioned the liphypertrophy, which I find troublesome and, incidentally, came on rather rapidly within the past year. I have had some lipoatrophy for years, but nothing I couldn't live with. It made me look lean, which I rather liked.

I have some degree of hyperlipidemia, for which I now take Zetia and Pravastatin, with good results.
I also take 4,000 mgs of fish oil each day to keep the triglycerides in check, although they have risen recently, either because of the Sustiva or because of my new-found fetish for ice cream.

I had a run-in with kidney sludge five or six years ago from the Crixivan, but overcame that by increasing the amount of water I drink daily. I still drink at least 64 ounces of water daily, plus coffee, tea, etc.

I have had minor anemia since beginning AZT in 1996, but it is very minor and not a problem.

I have had problems with peripheral neuropathy, but again, these have been minor with the exception of a three-month period when my doctor mistakenly prescribed Vytorin for my elevated blood lipids. As you may know, Vytorin is a combination of Zetia and Zocor. Unfortunately, Zocor is contraindicated when taking Crixivan and I suffered some rather pointed side effects, most notably severe and worsening PN.
I addressed the situation with my doctor, dumped the Vytorin and things returned to more or less normal after about six months, luckily with no real permanent damage.

Today, the PN is evident, but not a hindrance to living my life fully.

You will note I took Crixivan for more than a decade. Many people, including quite a few here, had terrible side effects from Crix. I didn't.

Likewise, many people suffer terribly when they take AZT, yet it is a breeze for me.

The bottom line is you don't know how a drug will affect you until you start taking it. What works for me may make your life miserable, and vice-versa.

The meds today are much easier to take, adhere to and live with - at least I hope they are. For me, the jury is still out on Sustiva. I'll let you know.

But even it I can't continue with Sustiva, I know many others who have had no problems with it, aside from a feeling of drunkenness for the first few days. For them, Sustiva or its hybrid cousin, Atripla, are godsends.

I truly believe people will be able to live with and even thrive on the meds for 20 years. Will I, who knows? I hope so. But only time will tell.

Likewise, only you will be able to judge once you have started down that path.


« Last Edit: June 17, 2007, 03:33:30 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)


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