side effects of hiv drugs

[rawTOP]

They are really aggressive here since getting people on meds seems to be more of a public policy thing about reducing transmission -- they just want to get us all to undetectable. The stuff about the spread of the virus into the brain and other tissues seems to be an attempt to grasp at some rationale for handing out meds. One of my docs told me she'd rather have me on meds for ten years and avoid dementia than take the risk of waiting until I'm at an AIDS diagnosis to start meds.

That scares me. Are you sure your doctor isn't actually a drug rep for one of the pharma companies? lol

The problem is that poz guys have been a discriminated class for a while and now the doctors are showing they'd rather hurt a poz guy with long-term drugs (that they may not need so quickly), than risk neg guys getting pozzed (by being stupid and getting fucked raw). This sets poz guys up as being a 2nd, lower, class and not worthy of the same level of individual care and respect that neg guys get.

[rawpozbtm]

Maybe I'm just lucky, but I have been on Atripla (a 3 component ARV) for 4 years now and have had no side effects. My Doc, with my enthusiastic approval after a lot of research and discussion started me on meds soon after diagnosis with a CD4 of 511 and Vl of 47000. Good numbers, but a moderate viral load. My feeling was I would have to start meds eventually. Over a 40-50 year period why wait 1 or 2 years and risk damage to my immune system. Lets face it, only a very small number of people, less than 5% are elite controllers, whose body can control the virus without meds.

Seeing a doc 3 times a year has made me much more conscious of my health. I exercise 6 days a week, control my weight and my cholesterol and triglycerides are great.

Other than testing positive for an HIV antibody test, every other test would be comporable to a healthy 50 year old man.

I tried Atripla, and I had horrible side effects. I had night terrors and wild hallucinations. Even though I had a bad experience with Atrpla, each person is different. After I went off the Atripla, then they put me on my current cocktail. I have been on my cocktail for almost 3 years.

[Guest cumdrainer4u]

thanks guys I appreciate it I made the decision to bareback only and with all guys pozz and neg having been breed by poz guys is by far the hotest fuck so I guess I have some decisions to make when I become pozzed I am 51 and in good health never stayed on any meds the doctors gave me My sexual desires is hard to understand but I am who I am and it feels good there are others on this ite like me. Please keep posting and thank you

[TonyRedux]

I've been pretty vocal in another thread about my perception that doctors are giving poz guys ARVs too early and too aggressively. 1) When you'll be on medications for 20, 40, 60+ years the long-term effects of the medications can be worse than the disease they're supposed to treat.

2) I see Tony's situation as my nightmare scenario. I've talked to Tony in person about some of these issues and I respect his choice to make informed decisions about his health, but I personally would choose the exact opposite treatment plan if I were in his shoes. I'd delay taking meds as long as possible and then take as few as possible.

1) u have grossly mischosen ur words here bro..."worse than the disease they're supposed to treat"?! reality check: HIV remains one of the deadliest viruses in human history, with a fatality ratio well over 95%...pretty much 100% fatality in the absence of a CCR-5 mutation. without treatment, few indeed will make it to 20 years of infection, and almost none will make it to 40 (let alone) 60 years of being infected. i'll take living with controlled side effects over dying the very miserable death of AIDS, and over living with uncontrolled side effects.

2) well, here it's appropriate to remind u that i went from 2004 to 2008 trying ur approach...my quality of life then was substantially worse than my quality of life now, with more rashes, more diarrhea, more nausea, higher cholesterol, more moodiness, etc. when i went for major ENT surgery recently, i had several doctors ask me if i've considered taking steps to lower the number of meds i'm on. i'd simply ask them "well, my drug list is in front of u, so pick just one u think i can do without..?"

every time they tried, they had to admit their error when learning more of my documented medical history.

in truth i always told myself i would commit suicide if i ever sero-converted...now? nah, fuck that. i always told myself i would take as little as possible if i went for treatment. having tried that approach for 4 unhappy years...NAH, fuck that. much happier now. whenever i find a workable solution that would allow me to control a side effect without medication, i'm happy to try. i consistently have people marvel at the huge handful of pills i take at lunch and especially dinner, and frankly it can be tricky doing so...sometimes they want to spill right out of my hand!

nonetheless, i'm happier and healthier than perhaps at any previous time in my life. with all my present issues, that's pretty remarkable. u cant effectively judge anyone else's road without walking a mile in their shoes, or whatever.

[rawTOP]

Tony - Doctors put poz guys on meds quickly even when they're genetically predisposed to be able to "control" HIV - they often don't even bother to check whether someone is capable of conrolling HIV. For those people the drugs are clearly worse than the disease, but they get the same one-size-fits-all therapy everyone else gets. And I do understand HIV is fatal in most cases if left untreated - it's not a lesson you forget after caring for someone who dies of AIDS. I've also made it clear many times over that I'm not advocating zero meds - there is a time and place for them. We've had this discussion and you know how to interpret what I say, even when I'm a little sloppy in choosing my words. Your situation notwithstanding, I think early and aggressive treatment will come back to haunt a lot of guys - and for them the side effects of early and aggressive will be worse than a more laissez faire treatment plan.

I still say your scenario would be a worst-case scenario for me personally. I worry about you 10, 15 years down the road. But I also completely respect your choices - they were researched and well-informed. The problem is most guys just do what the guy in the white lab coat tells them to do and in many cases that's a bad thing to do.

[TonyRedux]

Tony - Doctors put poz guys on meds quickly even when they're genetically predisposed to be able to "control" HIV - they often don't even bother to check whether someone is capable of conrolling HIV. For those people the drugs are clearly worse than the disease, but they get the same one-size-fits-all therapy everyone else gets. And I do understand HIV is fatal in most cases if left untreated - it's not a lesson you forget after caring for someone who dies of AIDS. I've also made it clear many times over that I'm not advocating zero meds - there is a time and place for them. We've had this discussion and you know how to interpret what I say, even when I'm a little sloppy in choosing my words. Your situation notwithstanding, I think early and aggressive treatment will come back to haunt a lot of guys - and for them the side effects of early and aggressive will be worse than a more laissez faire treatment plan.

I still say your scenario would be a worst-case scenario for me personally. I worry about you 10, 15 years down the road. But I also completely respect your choices - they were researched and well-informed. The problem is most guys just do what the guy in the white lab coat tells them to do and in many cases that's a bad thing to do.

i'll concur with u that most patients r far too trusting of their doctors. the truth is that becoming more informed and empowered myself has not only improved my own health, it has improved the medical skill of every doctor who treats me. i am better able to answer questions and discuss issues and approve and reject his ideas, and propose and advocate for my own.

nonetheless, i remind u that life is for learning, and it makes liars and hypocrites of us many times over the course of a full life.

u really don't know what u'd do until ur there.

[rawTOP]

i'll concur with u that most patients r far too trusting of their doctors. the truth is that becoming more informed and empowered myself has not only improved my own health, it has improved the medical skill of every doctor who treats me. i am better able to answer questions and discuss issues and approve and reject his ideas, and propose and advocate for my own.

nonetheless, i remind u that life is for learning, and it makes liars and hypocrites of us many times over the course of a full life.

u really don't know what u'd do until ur there.

I agree 100%. Still, I'd say, when possible, it's a good thing to think through the questions before you have to make the decisions. If you have guiding principles that are based on life experience (like my "take meds only when absolutely necessary and then in the smallest possible doses"), then the decisions you have to make in the heat of the moment with minimal research will be ones you'll generally be comfortable with after the fact.

[Inception]

In answer to the original question, I am on Kivexa (600mg abacavir & 300mg lamivudine) and Reyataz (400mg atazanavir sulfate) and have never had any side effects and my cholesterol remains normal. When I started I was on 300mg Reyataz with a low dose Ritonavir as a booster but in Vancouver they are trying with some patients to do away with using the Rotonavir. They did a TDM when they took it away and I seemed to have fine drug levels without it.

Before starting meds I found that I would get infections more frequently, especially since I work in construction and often get nick and cuts on my hands I found these usually got infected and I had to use a lot of hydrogen peroxide to clean them. I also was getting bad acne on my back before starting meds. I haven't had any of these problems since my viral load has become undetectable and my CD4's have started to climb. I was at about 400 when I started meds.

My biggest fear when starting meds was side-effects, especially the facial deformities. But the drugs I am on don't seem to cause these. I can't say 100% but since stopping the Ritonavir I would say my gut is not as big, but it's hard to say cause I've always been a chubby guy anyways.

My doctor did consider putting me on the drug mentioned above, Atripla, but I didn't want the hallucinations etc. I am happy with my regimen, and really my biggest concern would be not doing anything to jeopardize it. This is my biggest reason to not go all out all the time bbing cause I am afraid to become drug resistant.

[rawcumbiguy]

In answer to the original question, I am on Kivexa (600mg abacavir & 300mg lamivudine) and Reyataz (400mg atazanavir sulfate) and have never had any side effects and my cholesterol remains normal. When I started I was on 300mg Reyataz with a low dose Ritonavir as a booster but in Vancouver they are trying with some patients to do away with using the Rotonavir. They did a TDM when they took it away and I seemed to have fine drug levels without it.

Before starting meds I found that I would get infections more frequently, especially since I work in construction and often get nick and cuts on my hands I found these usually got infected and I had to use a lot of hydrogen peroxide to clean them. I also was getting bad acne on my back before starting meds. I haven't had any of these problems since my viral load has become undetectable and my CD4's have started to climb. I was at about 400 when I started meds.

My biggest fear when starting meds was side-effects, especially the facial deformities. But the drugs I am on don't seem to cause these. I can't say 100% but since stopping the Ritonavir I would say my gut is not as big, but it's hard to say cause I've always been a chubby guy anyways.

My doctor did consider putting me on the drug mentioned above, Atripla, but I didn't want the hallucinations etc. I am happy with my regimen, and really my biggest concern would be not doing anything to jeopardize it. This is my biggest reason to not go all out all the time bbing cause I am afraid to become drug resistant.

if your current meds are working and you are happy with them I certainly would go changing it.

[HungLatinDom]

Patients who take one of the most widely prescribed drugs to treat HIV infection [tenofovir] increase their risk of kidney damage by up to 34 percent every year they take the medication, according to a study of more than 10,000 HIV-positive veterans.

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2012/02/18/MNAS1N8SHA.DTL&tsp=1

[rawcumbiguy]

Tenofovir has been known for years to increase kidney damage. i have read this study in detail. it has always been recommended with most of the hiv meds that the doctors keep a check on kidney and liver functions to hopefully catch anything before it can become a major problem

[lonelyguy23]

I've been on meds for years ... and there are days that I Really wish that I could 'take a break'! I also have to take meds for Blood pressure, and most recently, To control blood sugars. I have been 'non-detectable' vl for a long time. Not so true in my past ... Before starting the newer coctails, I had a CD4 count of about [ 5 ], and a viral load of around [ 860,000 ]. I don't seem to have any 'side-effects' from my current meds - other than the constant drain on my wallet.

[Guest ohgodpozme]

the truth is that becoming more informed and empowered myself has not only improved my own health, it has improved the medical skill of every doctor who treats me. i am better able to answer questions and discuss issues and approve and reject his ideas, and propose and advocate for my own.

This has been my experience as well. I lived in Seattle and had a great HIV specialist with whom I started in his first month of private practice, and we both grew and improved our knowledge through our working relationship. I was also his first Hepatitis C case*, and it changed his approach to diagnosis and testing with every new HIV patient he sees. Currently I live in a very rural, isolated area and my doc right now is a GP who is making huge strides in her professional knowledge because I've been able to educate her as we work together. It feels really good, honestly.

*The most optimistic odds for achieving a sustained virological response (SVR) in HIV-coinfected patients are ~30%; the most conservative are ~10%. I am one of the few HIV-coinfected patients who sees success in HCV treatment. It would be difficult to overstate the sheer misery of living through treatment for Hep C. HIV doesn't scare me. Hep C terrifies me.

[PhoenixGeoff]

When I first tested poz, I waited a year to adjust to the news before starting treatment, even though the doctors wanted me to. Even though I expected it at some point, the diagnosis at that particular point was more of a shock than it should have been. In retrospect, waiting was the right decision. I really wasn't ready for treatment.

At first, because I had no insurance, I signed up for a study looking for ways to reduce the side effects of Viracept. Viracept is a protease inhibitor with difficult GI side effects. The CDC, for this reason, calls it a second line medication (it does attack protease in HIV in a unique way so is effective even if you are resistant to other PIs). Basically, more or less permanent low-grade nausea and diarrhea. Both were fine on any given day, but the cumulative effect of the side effects day after day after day wore me down and eventually led me to start missing doses. I'm now resistant to Viracept (but neither of the other two meds I was on, thank goodness).

My current regimen includes Sustiva, which has some fairly well known mental effects. Taken with a high fat meal, it can make me kind of slow and dopey and icky feeling for an hour or two. They usually recommend that you have it before bed instead. Taken that way, I occasionally get insomnia, and lately I've been getting those very intense dreams some people talk about.

The moral of my story would be to objectively assess your side effects and report them to your doctor. Don't try to tough it out. Be realistic about what you can and can't adjust to. Also listen to what your doctor tells you. Often the side effects start out strong and then fade considerably over a month or two (that happened with Sustiva for me, but not Viracept).

In short, be actively involved with your treatment. Your doctor is there to advise you and inform you about treatment options, but the ultimate decisions are always yours. You need to do what's needed to make sure they're properly informed.

[bearbandit]

Tenofovir has been known for years to increase kidney damage. i have read this study in detail. it has always been recommended with most of the hiv meds that the doctors keep a check on kidney and liver functions to hopefully catch anything before it can become a major problem

Tell me about it... I'm writing this from my hospital room where I'm being treated for Fanconi's syndrome caused by tenofovir. It's not pleasant: basically you end up pissing away vital minerals and vitamins instead of them being passed back into the bloodstream. Worst for me has been the lowered potassium levels. As well as the risk of heart arrhythmia, it prevents nerves and brain cells from functioning properly leading to severely distorted thinking. I have massive holes in my memory of the past few months, but I have managed some truly bizarre behaviour and thoughts like thinking that a small pot of yogurt and a litre of fruit juice per day is an adequate diet, buying a new television because I couldn't find the remote control for the TV I already had, accusing social services of stealing from me and so on. I've lost a quarter of my body weight and have to use a walking stick - even then I can't walk more than a couple of hundred yards. As a measure of the change back in March I had no trouble handling my Suzuki Bandit, not the lightest of bikes, at speed on rural Welsh roads.

Atazanavir decided to join the party by having a go at my liver. I'm now on a less than ideal combination for HIV and take something like twenty other pills per day, mostly vitamins and minerals. My best guess is that it's going to take me till the end of the year to get back into shape, balancing eating for weight gain against exercising to rebuild the muscle that I've lost. Ironically throughout this my immune numbers have remained good, but the general debility I'm living with makes it even more essential that I maintain HIV therapy.

Okay it's a pretty extreme example, especially given the rarity of Fanconi's syndrome, but if my HIV "doctor" (now history) had been paying attention to more than just immune numbers none of this need have happened...