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Author Topic: Sudden hair loss wondering if effect of Truvada/Isentress, replies so welcome!  (Read 5497 times)

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Offline uncertain

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Hello all, I want to thank everyone on this forum, especially Miss P, who has really been supportive of me since being diagnosed during seroconversion and put on meds within 4 weeks of infection. FINALLY ALL THE SIDE EFFECTS HAVE ENDED, the horrible muscle pain, fatigue, (not 100% but about 70%, so I'm happy).  For about 3 weeks my hair has become more and more brittle and for the last couple weeks actually comes out in small clumps like 7 hairs or more when I put my hands through it, also on sides, and I have never had this happen before.  I was quite stressed during this initial process, but many people from work to friends are commenting on how thin my hair looks and how brittle.  I can handle the exzema on my nose (from Isentress I think) maybe its clogged my hair poors.  I can handle the diet changes, the sleep issues, the fecal explosions, but I just cant or really don't want to deal with my hair all falling out, and it really is... any idea's?  Ill ask my doc on the 4th, Im in europe so he is a bit of a "deal with it" type guy, but Ill pay for a specialist if he does not seem to care... Taking Truvada and Isentress, dropped Prezista and Norvir due to stomach pains.... viral load from 11,000,000 to 1000 in 4 weeks and cd4 around 500 (if I remember) see Doc next week.  Thank you!
The candle that burns twice as bright burns half as long....

Offline Newguy

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Hi Uncertain

Zero hair loss for me and I am on Truvada and Isentress.

I hope this helps

Offline uncertain

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I'm happy for you, but I have major hair loss, saw my old hair dresser whom I saw 4 months ago tonight for a coffee, and he said I've lost more than half my hair.... let's hope that if it is a side effect i can change therapy, which would be too bad as I am doing well on the treatment, but the hair loss is very sudden and strange.
The candle that burns twice as bright burns half as long....

Offline buginme2

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Don't automatically assume its the meds.   HIV itself can cause hair loss as well as a lot of things (like changes in hormone levels, including testosterone) that can also cause hair loss.

It most likely will improve over time with meds.
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Offline emeraldize

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Same regimen, no hair loss to date, two years on treatment.

Offline CandyO

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My husband is on Truvada and Insentress.No hair loss for him.He has done very well on this combo.
Best of luck

Offline uncertain

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Hello all, but ive only been poz since september, and so it would seem odd to have such heavy hair loss, the docs think meds, I see them Friday..... I am wondering IF it was the meds, if it would be TRUVADA or ISENTRESS.... I suppose no one would know for sure....
The candle that burns twice as bright burns half as long....

Offline Miss Philicia

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If you do a search on these forums you may find some reports of hair loss but it's something that effects a very tiny portion of patients. Stabbing in the dark I also found a doctor on the body that speaks of rare alopecia effects from the emtricitabine portion of truvada, and somewhere else about epivir and as both are in the same NRTI class there is some possible relation, but this is not clear.

Something for you doctor to investigate if he decides to swap out truvada for another NRTI, which would most likely be Epzicom but that contains epivir. All of the available single pill dose HAART meds contain emtricitabine so you'd be looking at a multiple pill dosing.
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Offline emeraldize

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Hi Uncertain

I looked for a credible medical organization offering information about stress on hair loss. I found this which may help you in conversations with your medical team.

Soon after diagnosis, my eyes were what showed stress. Dry as a desert and I was given a prescription for Restasis. I held out and didn't fill it. Eventually I came back to Earth and I've never had a tear problem since.

Stress can shred us and the early months are stressful for most.
Good luck to you.


Offline uncertain

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Thansk Miss P and the others, I also read about the taking truvada apart and just taking a part of it, I REALLY have no problem with pills even 8 a day, i love my xanax so if it going to save my hair, NO PROBLEM... but it is odd, very odd, and I am trying to figure out.... Truvada or Isentress???? Seems Truvada more culprit, if it is not stress, and i doubt it cause the texture is like straw, and i condition and really am well groomed, never like this before, been on meds almost three months.  Wish me luck at Dr. Friday!
The candle that burns twice as bright burns half as long....

Offline Ann

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I started on Prezista, Norvir and Truvada in July 2012. Within a few weeks my hair started falling out and by late November I was contemplating getting it over with and shaving it all off like Sinead O'Conner/Sigourney Weaver. Funnily enough, once I'd made that decision (but hadn't yet acted on it), I noticed that it slowed down and within a week or two, completely stopped and my hair started coming back. (This was in late December, a good five and a half months after starting the meds.)

Before this reversal happened, I was checked for thyroid issues and anemia, as they can both cause hair loss and can both be somewhat common in conjunction with hiv. It was only after these test results came back in normal ranges that my doctor conceded that it could be linked to the meds. He said he'd seen it before, but not very often. He also said that in his experience (nearly 30 years), it usually did resolve in time, and usually within a few months as in my experience.

I also experienced med-related hair loss when I was on Interferon and Ribaviron (hep C meds) and while it stopped and reversed after the treatment ended, my hair never came back as full as it once was and I continued to experience more than usual (for me, pre-hcv treatment) hair loss. Since this side effect from the hiv meds has reversed, my hair is thicker than it has been since before the hcv treatment in 2002/03. My doctor said the previous med-related hair loss might have made me more prone to experiencing it with the hiv meds.

So in a nutshell, what I'm trying to tell you is that you should give it more time. Also, get your thyroid checked and also get checked for anemia. There is an excellent chance that your hair loss will reverse itself like it did in my case, but you'll have to be patient.

You call this side effect "devastating" in another thread, but come on, it's not like it's really going to impact on your quality of life that much. Keep in mind that this opinion is coming from a woman who was facing baldness. Many people think bald men are sexy, but rarely do they think that about women.  I'm not trivialising it, but there are worse things in life other than baldness.

Hang in there, and good luck.
« Last Edit: December 04, 2013, 07:11:38 AM by Ann »
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