If I Were HIV Positive
HIV Experts Reveal When and With What HIV Medications They Would Start Treatment
Experts tell others what to do. That's their job. But what if they were infected with HIV? When would they start treatment and what medication would they take? In this growing section, you'll hear from HIV-negative HIV specialists and HIV advocates. They will share with you what they would do if they were positive.
Founding Co-Director, Project Inform, San Francisco, Calif.
If I knew I was infected, I'd try to start treatment the next day. But even if it was a week later, I would do that, because the evidence has really shifted.
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It's really accumulating now to the point that says earlier treatment is the best way to deal with this disease, because most of the damage of HIV is really done in those first few months. After that, people go for long periods where they're relatively stable. But that underlying damage has been done and the patient is going to pay the price for it sooner or later down the road. So I think the best thing you can do is get into treatment and try to stop that as quickly as possible.
If you didn't start early and you just happened to get tested and you think you were infected a couple of years ago, what CD4 count would you start treatment at?
I wouldn't base it on the CD4
count anymore. I would base it simply on the fact that I was positive. Unless I had a spectacularly high CD4 count and naturally controlled virus -- meaning undetectable despite no use of treatment -- if that were the case, maybe I would delay treatment. That would mean I'm one of those what they call elite controllers. But the people are rare and few and far between.
For most other folks, the right answer, I believe -- and this is just my personal belief, of course. I'm not recommending anything for anybody else -- but my personal belief is people ought to start treatment simply based on the fact that they're HIV positive.
Just to clarify: What do you mean by high CD4 count?
In the context I was referring to, I was talking about 1,000 or above.
What would be your first choice of a regimen?
The standard first choice these days is something like Atripla
[efavirenz/tenofovir/FTC], which is a simple three-drugs-in-one pill. I'm not sure, though, that it's the least toxic regimen out there.
If I had the choice myself, I would probably start with the new drug, the integrase inhibitor Isentress
[raltegravir] because everything I've seen suggests it's both the most potent and the least toxic drug that we have. At least temporarily, I'd couple it with Truvada
[tenofovir/FTC], which is a two-drug combination that's probably the safest of its type.
But I would continue to watch carefully, because there are studies underway now that are looking into the possibility of using just two drugs of the new generation. Two drugs that have high potency and very low toxicity. We don't yet have all the data we need to do that, but it's coming soon. So I'd start with the Isentress and Truvada and then I'd watch.
Would you worry about metabolic side effects?
That's exactly the reason I would choose what I did. There don't appear to be metabolic side effects with Isentress. It has no apparent effect on cholesterol levels, which is really sort of at the heart of the metabolic effects. That's precisely why I would choose it. Almost anything else that you choose, like a protease inhibitor
or even the non-nucleoside [NNRTIs
] like Sustiva
[efavirenz], they do have an effect on cholesterol and the metabolic effect.
One protease inhibitor that doesn't is Reyataz
[atazanavir]. But that's only if you use it without the booster drug ritonavir
[Norvir]. Unfortunately, to get it to work well, you really need to use ritonavir with it.
There are some studies going on, or starting soon, that are going to combine Isentress and Reyataz without the booster. Those will be very interesting to watch because there you'd have two drugs that don't have metabolic side effects.
Would you take any additional vitamins or supplements if you were positive?
It somewhat depends. There's a lot of growing literature these days that suggests that vitamin supplements are not
having the effects that people had hoped on heart disease and other factors. There had been a lot of hope that it would affect cancers and heart disease and diabetes. The long-term data is not supporting it.
But it comes down to your diet. If you eat a good diet and you take care of yourself, then I don't think the supplements are all that necessary. But if you don't, then they're probably better than nothing and then I'd consider them. That's about all I can say on that.
Joel Gallant, M.D., M.P.H.
Johns Hopkins University School of Medicine, Baltimore, Md.
There are several questions there. One is: When would you start because you were recently infected? The other is just: When would you start, period?
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I think that there is still some evidence suggesting that if you start during acute infection, there may be a benefit, even if it's a temporary course of treatment. That means starting when you're still having your fever and you haven't even gotten a positive antibody test yet.
If I were diagnosed in that
phase -- and very few people are, sadly -- I would probably start HIV treatment right away and then when the dust settles decide what to do about it for long term.
If I was diagnosed maybe a month after infection, I think the data are a little less convincing that there is any special benefit, but I still think the question is an open one. Since I live in Baltimore and we have a primary infection study that randomizes people to either a year's worth of treatment or to just wait until they meet the standard guidelines criteria for treatment, I would think I would enroll myself in that trial. Because we simply don't know if there's any special benefit once you've seroconverted and then recovered from acute retroviral syndrome.
The other question that you didn't ask, but it's relevant, is: When would I start just based on being infected irrespective of when I acquired the HIV?
I think that we're moving toward treating just about everybody with HIV. The data continue to show -- granted, they're observational data -- but they continue to show that there are differences in morbidity and mortality in treated patients versus untreated patients regardless of CD4. We recently saw the data from NA-ACCORD showing a 70 percent lower mortality in people who started at 350 to 500. I suspect in CROI [Conference on Retroviruses and Opportunistic Infections]
we're going to see further data supporting treatment above 500.
Ultimately, I think we're going to get to the point where we just say, "Why would we not treat this infectious, progressive, transmittable disease when we have such good, safe therapy? Then the questions really come down to cost effectiveness and cost. How are we going to afford treatment? But I think from a medical standpoint you can certainly justify it. I think if we get to that point, the reason not to treat will be primarily in people who are unlikely to be able to adhere to therapy. In those people, it might make sense just to wait.
I think if I had HIV, regardless of when I thought I was infected, I would be tempted to just go ahead and start treatment.
What would be your first choice as a regimen?
Right now, probably Atripla [efavirenz/tenofovir/FTC]. My kidneys are okay and I would be curious to see what the dreams were like. [laughs] I think there are always people who try Atripla and don't tolerate it even after giving it a month or two of a good trial. You can never predict who those people are going to be in advance. All you can do is give it and find out what happens.
But I think the combination of the simplicity of it and the fact that, so far, it's really never been surpassed in terms of efficacy in any clinical trial would be pretty convincing. But there are certainly plenty of other great options that I could fall back on if that didn't suit me.
Would you worry about metabolic side effects, body shape changes, things like that?
We don't worry about that with those drugs so much. The lipoatrophy was really a function of the thimadine analogs, AZT
[Retrovir, zidovudine] and d4t
[Zerit, stavudine], which I don't use anymore [for my patients]. The fat accumulation is -- it's less clear what causes that. It doesn't seem to be a direct side effect of antiretrovirals or protease inhibitors, specifically, but it may be a secondary effect of drugs like protease inhibitors that can cause insulin resistance or high triglycerides, which then in turn can lead to fat accumulation. Atripla doesn't include a protease inhibitor, so I'd be less concerned about that.
Certainly, we see a lot of weight gain in people who start antiretroviral therapy of any kind, but you have to distinguish that from fat accumulation. The weight gain is just because you're getting healthier and when you get healthy it's easy to gain weight. I have to remind people about that even before I start them. They may read about body shape changes, but just overall weight gain is not really a body shape change. You're just restoring yourself to normal health and that allows you to gain weight more easily that you did when you had a high viral load
Would you take any additional vitamins or supplements?
You know, the evidence for vitamins
and supplements is pretty weak right now. In fact, most of the vitamins are getting pretty bad press with new studies showing that they either don't do the things they were supposed to do or that they do things that they're not supposed to do.
I eat a pretty healthy diet, so I don't think that I'm deficient in any vitamins. I certainly recommend vitamins for people whose diet isn't so good. The only vitamin right now that's got a pretty good reputation is vitamin D. Especially for people who are living in the Northeast or the Northwest, not getting a lot of sun, using sunscreen and all those things they tell you to do and then you get no sun exposure, so you become vitamin D deficient.
I do think that taking vitamin D and calcium supplements probably makes some sense, but in terms of other things, I'm not sure that there's much evidence to support it, though a multivitamin is probably pretty harmless.
Anton Pozniak, M.D.
Chelsea and Westminster Hospital, U.K.
If I had acute seroconversion, I wouldn't be treated. I'd wait and see what happens to my CD4 cell count.
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So you don't think the data supports starting HIV treatment during acute infection?
I'd only do that if I was really sick or I developed an AIDS-defining illness during the acute seroconversion. Otherwise, I wouldn't do that, no.
Would I do it if I knew I got infected three days ago, or four days ago? In that case, I'd join a clinical trial; I definitely would. Or I'd find somewhere where they're doing work on that, and I'd go and volunteer, and I'd say randomize me.
If I was chronically infected and asymptomatic, I'd have to weigh up what's going on with my own individual health and my feeling about how to take treatment; I'd make an individual decision.
What would be your first choice as a regimen?
I'd probably take efavirenz/FTC/tenofovir [Atripla] actually, because in the U.K. [United Kingdom], we've got a lot of experience with non-nucleosides and with that combination. I would quite like to have a one-pill, once-a-day regimen to start with. I think I could stick to that, but obviously, if I got side effects, I would switch over.
Would you worry about metabolic side effects with these drugs?
Yes, of course I would. I'd worry about them, but I think that was the point I made here. If it's saving my life and preserving my health, I'd take them, but I'd make sure I was regularly monitored for those side effects. With the sort of combination I mentioned to you, I'd make sure my cholesterol was measured and my renal function was measured.
Comment by: A
Mon., Jan. 23, 2012 at 6:27 pm UTC
Comment by: leahbeth
Sat., Feb. 5, 2011 at 1:08 am UTC
I was diagnosed in 2009, can't remember exactly when because it was right after my partner passed away and I was heavy in grief and shock, finding out after he passed that he had, had hiv for about 10 yrs. So the time we were together,about 4 yrs I didn't know. Wow, that was a very traumatizing event in my life, I loved him like no other. Anyways of course my test came back positive, but at that point I didn't care, my thoughts were, good, i wanted to die so I could join him. It took sometime to snap out of it, but as I was slowly getting on with my life, I found myself in deep depression, tryin to work 2 jobs and take care of my kids, i also started getting bad anxiety attacks..anyways to make a long story short,looking back in retrospect, I wish I would of known more about the virus and had my tests done as soon as I found out I had it and maybe my cd4 count wouldn't of been so low, although I have no idea how long they have been low or how long I've been infected. I do know that I'm waiting to start my meds and while I'm waiting I'm on antibiotics. The best advice I've heard all along is to educate yourself about the virus.What I don't understand is why when back in aug 2010 my cd4 count was 140 and my doctor didn't advise me what the numbers meant or put me on meds right away.I finally get a specialist in jan this year and get retested and find out my cd4 is at 160 and of course its explained to me that I should be on meds right away...Hmmm kind of confusing.
Comment by: Justme
Sun., Aug. 29, 2010 at 5:21 am UTC
Fear is the worst possible thing that you can allow to run your life. Get tested as soon as possible if you feel you may be infected. The drugs that are out now are amazing. I found out I was HIV positive a few months ago, and already the virus is not detectable in my body, because I started treatment early! Please get tested, pretending that it is not there is doing more harm than good for you. I am so grateful for my new life. I know what's important now. I know that sounds crazy, but I took life for granted before and now ...it's amazing what a shake up will do. God bless everyone on this site, I'm praying for y'all
Comment by: clement
Fri., Jul. 9, 2010 at 8:10 am UTC
I was dignose HIV possitive seven years ago, throughout these period I live med.Just about two month ago I went for test and the result was negative and I tried again and the the result is still negative. My Doc asked if I have been taking something else to support the medication but I didn`t took anything else. Does the result means that I am free? the question in this situation is pending.
Comment by: hp
Sat., Apr. 17, 2010 at 4:56 am UTC
i took the test and havent gotten my results and im terrified........ everyone says such inspirational things on this site but i dont know if i could live... im only 20 and i made a mistakes... im so nervous
Comment by: Malik
(Malang, East Java, Indonesia)
Tue., Jan. 26, 2010 at 12:06 am UTC
If I were HIV positive... i don't know what i'm gonna do... honestly, i'm afraid of the stigma attached to people with HIV/AIDS..
Well, I'm going to receive my test result in 3 hours. Wish me luck!
Comment by: lucy
Sun., Jan. 24, 2010 at 10:51 am UTC
i was exposed on jan 5th 2009.had all the symptoms(rashes,throat infection,lymp node,on and off slight sweat at night )and tested positive on nov. till date am scared to test my cd4 and viral load. am 26 yrs.
Comment by: niky
Wed., Dec. 16, 2009 at 9:21 pm UTC
i will said if postive first give to god because people going except when they ready if they dont move on to some thing that will it your life any way you got time for wrong thing people try bring you already stand in rain
Comment by: Joselyn
Sat., Dec. 12, 2009 at 8:41 pm UTC
hello everyone, i pray that everyone here that thinks they might be HIV+ aren't. It's known that now in days people with HIV can live a long time with treatment, but still is a hard situation to be in mostly if you have children. Which luck and strength for the one that are HIV+ and the ones that don't know god bless
Comment by: Kyia
Mon., Dec. 7, 2009 at 8:56 am UTC
You see if I was HIV + I'm not sure what I would do. All I know is that I would try to be strong and live my life to its fullest because no one knows if tomorrow will be there.
Comment by: Britt
Mon., Nov. 23, 2009 at 6:49 pm UTC
I am afraid that i may be positive, i will find out in a week. I would like to ask that everyone pray for me and more importantly pray for everyone on this board and in the world dealing with this problem.
Comment by: tisha
Sat., Nov. 21, 2009 at 11:05 am UTC
sometimes i think that i'm hiv positive. i don't know. i'm scared to get checked. my mother had hiv for 15 years. she died in 1993. i don't want to be sick - i have 3 little kids...
Comment by: Karen
Mon., Nov. 16, 2009 at 3:47 pm UTC
Hello I'm 23 yrs he's 38 if i was HIV positive i don't know what I'll do. U see lst year sep. 2008, I found out my bf is HIV positive n I was negative. I went through hell just thinking about it same time I was preg n had a miscarriage my weight went up to 250. Now it's back to 235. It's now nov. 09 n I'm still negative. I ended the relationship in march but we communicate by phone. nw its very hard. I very scared cause i don't want to die. thanks to this web site i have the info.
Comment by: Jeannie W
Thu., Nov. 12, 2009 at 3:37 pm UTC
It so makes me sad to see how so many people with this virus are treated! I married my 2nd husband after my 1st died in a car accident, And my husband told me in advance he was HIV positive. I did not care. I loved him. We had 14 years together. He raised my four children as his own. He went to schools to educate the students on the virus, might I add doing a better job then the health teachers. He passed away at home, Nov. 6, 2007 after being a real fighter for many years. I am negative and now I am upset and angry that there are so many uneducated, niave people in this world! I am out to educate! I talk to people infected and affected and have met some very strong people in this walk I am on. I ask people to love those who carry this virus as if they had cancer. We can make them sick before they can harm us. God Bless those living with the virus and the loved ones that are there for them. Also remember this at some point we will all know someone or love someone who has this virus! Time to really Educate, and we can get this virus under control. May God also bless the many hospice workers who really do care.
Comment by: francis
Thu., Nov. 5, 2009 at 1:09 am UTC
We all make mistakes and decisions in life. If it happens I'm HIV positive, I just need to accept it and move on, educate people about the disease, follow the experts and be positive. Live life to the fullest, life can end anytime.
Comment by: George Maris
Sun., Sep. 20, 2009 at 12:24 pm UTC
The most important thing a person could do, is to treat themselves good, Taking care of your body and mind is as important as knowing one's health. Get annual check ups, that includes HIV testing.
Comment by: LORIA COX
Sun., Sep. 13, 2009 at 3:57 pm UTC
I feel if a person is hivpositive or not you still should enjoy life because .who's promise tommorw.i i was positive i'll try to be strong for my children.
Comment by: tracy
Sat., Aug. 29, 2009 at 11:40 am UTC
Hello my friend is HIV+ and recently had a stomach virus (along with almost everyone in the home). He had blood drawn 3 weeks ago but yesterday his lab work mentioned that his viral load was low and his t cell count was 350. He's on medication and other than the virus he has been doing fine. Should I be worried about his health i'm trying to keep him upbeat. Can someone please tell me what methods he should take when having safe sex.
Thanks and God bless you all!
Comment by: oddessa
Thu., Aug. 27, 2009 at 8:25 pm UTC
tomorrow i will be finding out if i am HIV+ or not. i am in a high risk category and i am very scared. i don't know what i would do if i was positive. i would like to think that i would be strong but i don't know.
Comment by: Brittany
Mon., Aug. 17, 2009 at 11:59 pm UTC
If I was positive I would change the way I would look at life Forever. (Workout more, Get involved in activities, Be closer to my family) and Accept life........
Comment by: JOY
Mon., Aug. 17, 2009 at 4:37 am UTC
IF i were postive i would change what ive been doing and be a better person by educating young people about it, i would live life to the fullest and make sure that people see me as a person of courage and love
Comment by: ancella johnson
Fri., Aug. 7, 2009 at 3:21 pm UTC
my husband is positive I am negative, how do you explain that. does it mean i am a carrier
Comment by: johnboy
Tue., Aug. 4, 2009 at 10:33 am UTC
My dad is on cardiprin, betaloc, exforge and crestor for his heart.
Do these drugs interfere with the anti viral drugs?
Comment by: Nelis
(Northern New Jersey)
Thu., May. 21, 2009 at 4:30 am UTC
To everyone on here that suffers from this illness and is reading these words, I will pray that you all stay healthy and enjoy every single day of your lives without any pain, sorrow, regret or sadness. My heart is with you and so are my prayers.
"There's only us,
There's only this,
Forget regret-- or life is yours to miss.
No other road,
No other way,
No day but today"
You are loved, God bless.
Comment by: Theresa
Fri., Apr. 24, 2009 at 2:23 am UTC
My brother is 21 and has just found out he is HIV positive..:( i am so very sad for him and I want to know what should I do?
Comment by: kenny
Sun., Apr. 12, 2009 at 12:26 am UTC
i pray that our new president of the united states
pushes a cure to be found during his term.
Comment by: John
Thu., Mar. 12, 2009 at 8:44 pm UTC
I pray for this
Comment by: Jessy
Wed., Feb. 25, 2009 at 6:40 am UTC
I don't know what to do my boyfriend is HIV+ for almost 2 years. And he doesn't wan to go see a doctor or anything else. Am scare for him! What can I do?
Comment by: cherina
Fri., Feb. 6, 2009 at 1:29 pm UTC
if i were h.i.v positive id probably do everything as if it were my last day because living with h.i.v is very scary. To do it alone is even worse!!!!!
Comment by: Joey
Thu., Jan. 15, 2009 at 10:39 pm UTC
Anthony, the medications in 2009 are really not as toxic as the medicines of 15 years ago. So it's hard to base any decisions on your friend. If your CD4 count is 350 or lower, your immune system is compromised and you are in danger for lots of infections including heart disease and even cancer. There is no evidence the new medications hurt your liver, kidney and other organs. But there is a lot of evidence that HIV does serious damage to your body.
Comment by: Anthony
Thu., Jan. 15, 2009 at 9:35 pm UTC
My largest concern with taking medication early is I want to hold off the longterm effects of the medicine. I am young and I have no other health problems other than the fact that I am HIV +. I am concerned about what the medicine will do to my liver, kidneys, and other major organs in my body in the long run. I have a friend who has been + for 15 years and now he is on dialisis. I do not know if it was because of the medication or if he was predisposed to kidney and liver problems.
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