Atripla Ruining my face! Losing hair! Help!

[Papillon_44]

Almost two weeks into the Atripla and my face is blotchy (not a rash) with sores and Rosacea!  Help!  Anyone experience this?  Also- I have thick hair that never falls out and breaks now every morning about 30 or so hairs fall out!  Is hair loss permanent?  Is my face permanently disfigured?  I have gone 23 years without having any symptoms and now that I've started this medicine (Atripla- tenofovir (Viread), emtricitabine (Emtriva),  efavirenz (Sustiva)) I have all these weird things happening to me. 

Frankly I'd rather be dead in a coffin than go through life with a blotchy disfigured face and no hair... (Baldness does not run in my family- I have had thick full hair all my life as did my dad and both grandfathers)…

[Inchlingblue]

It could be related to other things. For example, low levels of thyroid can cause the symptoms you are describing. Have you had your TSH (Thyroid-Stimulating Hormone) levels checked? When they read high in a lab report that means thyroid hormone levels are low and vice versa.

[Papillon_44]

The Hair loss is definitely to do with the Atripla- I have been positive for 23 years and NEVER taken any medication and have been in what appears to be robust health (even though my CD4 was @ 240 and my VL 35K).  Why would after 23 years my Thyroid start freaking out?  Makes no sense.  These drugs are toxic and have now disfigured me in the face with blotchy redness and perhaps baldness...

People talk about how bringing you VL to undetectable is the goal- but at what cost?  What are the long term effects of these HIV drugs?  Liver problems, Kidney problems, Sleep problems, skin problems, hair loss, neuropathy and dementia seem to be things that long term HIV drug users experience.  And then they take more drugs to address the side effects compromising their health even more. 

Is it worth it all to have a quantity of life but no quality? 
 

[mecch]

Before you get all too nervous and doom and gloom - look up IRIS  Immune Reconstitution Inflammatory Syndrome.
Weird things happened to ma hair and skin when I started HAART but they resolved on their own.  Looked, better, actually.  Fresh skin!

[Papillon_44]

IRIS  Immune Reconstitution Inflammatory Syndrome.

If I had anything similar to that I would have talked to my DR already... 

I want quality of life not quantity and now i have more to worry about and perhaps permanent side effects...  All these HIV drugs cause side effects. 

[WillyWump]

People talk about how bringing you VL to undetectable is the goal- but at what cost?  

Is it worth it all to have a quantity of life but no quality?  
 

I guess to answer your question pointedly is it better to be bald or dead? If it was 1984 you'd probably be dead or on your way there...and whats so wrong with being bald?

But to echo Mecch and Inch, dont throw the bay out with the bath water. It could be other things. If it is the Atripla, there are other regimins. I'm on Truvada, Prezista, Norvir and I have no side effects, and still have my hair. Will there will be long term side effects that creep up later? I dont know, but dammit in the meantime Im enjoying the hell out of my life and cherish every minute of it because without HAART I'd be on my deathbed about now, or 6 feet under.

I think you need to ride it out for a couple months and see what transpires, If it bothers you so much then talk to your doc about a change of regimins.

-Will

[mecch]

Ask your doctor to confirm:  some of the symptoms of IRIS include blotchy and dry skin, breakouts, serious dandruff, and so on.
You have a very negative attitude about HAART and my personal opinion is that you will need to see HAART therapy in a more balanced light or you wont be a raging success on it.

[Miss Philicia]

If all of this is truly as severe as Papillon states, I have to wonder why he's not insisted on seeing his doctor in person and if so, what the doctor stated.  If you've not gone to the doctor then I'll have to ask why not?

[Papillon_44]

Hi Mecch,  My skin everywhere else looks amazing- as it did before.  healthy, clear, smooth and now glowing now that i have a sun tan.  Scalp is not flakey or dry.  Only issues is on my face and of course the hair loss. 

I have an apointment on Monday with my DR and will ask about the thyroid issues you indicated.  however i hate the idea to take a drug to treat something then take a drug to treat side effects of that drug, then take another drug (or drugs) to treat side effects from that...

It all adds up to putting more and more toxitity in my book....

[Papillon_44]

If all of this is truly as severe as Papillon states, I have to wonder why he's not insisted on seeing his doctor in person and if so, what the doctor stated.  If you've not gone to the doctor then I'll have to ask why not?

It's not an emergency- I can wait till Monday to see my DR.  No fevers, hives, rash, breathing problem etc.  Why bother the Dr if it's not life threatening...  Although it is devastating to me.

[bocker3]

When you see your doctor you might want to let him know just how this is affecting your mental health.  Seems that perhaps Sustiva is not the best drug choice for you.  I don't mean this in a flip way at all -- Sustiva can really screw up some folks head.  It may be a great drug for some (me, for instance) but many others have had to come off it due to the mental health impacts.

Talk to you doc about this.

Good luck,
Mike

[alliance]

My emotions were unusually apparent to others for a while when I first started meds. Anger - sadness - anxiety. Usually Im not like that.

[freaky_dream]

My emotions were unusually apparent to others for a while when I first started meds. Anger - sadness - anxiety. Usually Im not like that.

This is very true! Starting Atripla this last week I saw myself become very angsty and would snap very easily at the slightest provocation. I tended to be a hot head in the past yet I have mellowed in the last few years.

[alliance]

Exactly , freaky dream. Things have gotten back to less extreme now. I think it was most noticeable for the first few weeks and gradually moderated.  It really was a lot to deal with.

[DDGB]

Just reading these posts makes me think back with horror AND a smile on my face:) I HATED my meds when i first started as well - i also had blotchy outbreaks, and itchy rashes, and horrid dreams and and and.  I am happy to report that they do (usually) go away. Re the hairloss - I have never heard of meds causing that - but I did suffer from the same thing when my count got really low (without my knowing...i only discovered i was poz when i got really sick with pneumonia) - but anyway, what i'm trying to say is i wonder if it could possibly have something to do with the low count and not necessarily the meds? Let us know what your doctor says - we are all different so we'll all react to things differently, i'm really holding thumbs that it'll work out for you in the end (if it helps - i still have a full head of hair even WITH a lot of hairloss).  Try not to stress too much, stress is a huge contributing factor to many complication SUCH AS hairloss and skin problems - so go enjoy a nice weekend, have a glass of wine and a hot bubble bath and do whatever it takes to make yourself feel happy. BEST OF LUCK!!!!!

[northernguy]

Any updates Papillon44?  I hope things resolved for you.

[metekrop]

  Is my face permanently disfigured?  I have gone 23 years without having any symptoms and now that I've started this medicine (Atripla- tenofovir (Viread), emtricitabine (Emtriva),  efavirenz (Sustiva)) I have all these weird things happening to me. 

I don't think it is because the Atripla you are taking.  May because you got old.  23 years in such a horrible disease.   

[wtfimpoz]

The Hair loss is definitely to do with the Atripla- I have been positive for 23 years and NEVER taken any medication and have been in what appears to be robust health (even though my CD4 was @ 240 and my VL 35K).  Why would after 23 years my Thyroid start freaking out?  Makes no sense.  These drugs are toxic and have now disfigured me in the face with blotchy redness and perhaps baldness...

People talk about how bringing you VL to undetectable is the goal- but at what cost?  What are the long term effects of these HIV drugs?  Liver problems, Kidney problems, Sleep problems, skin problems, hair loss, neuropathy and dementia seem to be things that long term HIV drug users experience.  And then they take more drugs to address the side effects compromising their health even more. 

Is it worth it all to have a quantity of life but no quality? 
 

I don't think anyone has linked the drugs to dementia. 

[Papillon_44]

I don't think anyone has linked the drugs to dementia. 

My condolences for you if that is the case for you.  Let me know which drugs your taking so i can avoid them. 

[Papillon_44]

Any updates Papillon44?  I hope things resolved for you.

I posted this on a previous thread.  (Skin condition is the same BTW)

Hi- Thanks for your responses. 

Male pattern baldness is out as a cause.  My hairdresser has already ruled this out based on the way the hair is falling out- it also does not run in my family- No bald paternal uncles, full heads of hair on father and both grandfathers.  Brothers hair is like a bush! 

My T-cell count has hovered between 350 and 240 for the last couple of years so i don't know why all of a sudden my hair would fall out.  Also, I have been HIV positive for 23 years and just last July 3rd started taking medication (Atripla).  During that time my hair has been thick (too much even) and sometimes hard to control because it is so thick and full.  I would usually get my haircut every three weeks and have to trim a bit to maintain my grooming...  This hair loss is DEFINATELY medication related.

What does immune reconstitution mean?  Will my hair grow back?  Is the hair loss permanent?

The dermatologist I saw is supposedly a specialist in his field and deals specifically with patients with HIV and AIDS (I know Lame!!!!).  I had to remind and ask him to give me a thyroid and iron deficiency blood test (I know totally lame!!!).  I have no confidence in this so called "internationally renowned dermatologist". 

Any other points of view?  I have an emergency DR appointment at 2PM Pacific ST.  And would like to be as informed if not more informed than my f'ricking "doctor"...

Thank you and bless you all (except metekrop)! 

~P44

[jonny81]

I thought baldness was maternal not paternal... i digress...

I log on from time to time and put in my two cents worth.

I think you just have to stick with it. I was poz for 10 years (29 now) and as fit as a fiddle - great counts - then due to stress (and probably getting older) I've had to start.

Similar to yourself, I have always kept myself fit, ate well, worked full time and maintain a very busy life and also am not a 'pill-popper' - I hate to even take an aspirin too. I figure your body should be left to sort problems out naturally.

I was gutted I had to start taking a daily pill... kind of felt like I had been beaten in some way. Went through almost a week with no side effects and was like "awesome i kick ass - have no idea what everyone was complaining about! Wimps!". Then in the second week of Jan this year - bam. 2 weeks of CRAP that got worse and worse then just eventually faded away.

BUT - side effects finished now and have had no problems to report since... life goes on as per.

You should be getting your full diagnostics from your HIV doctor (liver function etc) so you'd be able to see if something was really wrong. It all sounds fairly typical of the usual side effect, no?

AND - reducing VL is essential!! You seem quite switched on - you can see that? The less energy your body spends fighting the amount of virus, the more energy you have for your self. It's just common sense.

I personally would not loose any sleep re: the hair loss - it might be quite natural in a... man... of ... your... age (ok... thin ice... i can feel it!)

If it's any consolation, I've always been attracted to men with thinning/no hair ha ha!!! It very butch (and apparently a sign of high testosterone... woof)!

If you're seeing an emergency doctor about ur hair loss... I'd say you have a pretty worry-free life! Start enjoying it again. Atripla is only a minor adjustment to make - and weighing up the benefits v. initial side effects that eventually pass - it's a no-brainer.

Jon

[ga1964]

Hi Papilon44,

I've been a licensed Cosmetologist for 13yrs. and I have taken Atripla for 3yrs. now.  I had a few skin issues, mostly acne on my arms but no hair loss.  To ease some of your stress, it is perfectly normal to loose between 75 and 150 hairs a day.  Having thicker hair can cause you to register on the higher end because you have more follicles per square inch of scalp.  The more follicles you have the thicker your hair is and the more hair you can loose naturally thru hair's natural growth cycle. 

Stress can also cause hair loss, and as you sound extremely stressed out about this, the stress could be the culprit.  Unless you are balding in spots, a.k.a. Alapecia Areata, I would say to try and stop stressing about your hair's natural growth cycle. 

Take care.

[Papillon_44]

it is perfectly normal to loose between 75 and 150 hairs a day.  Having thicker hair can cause you to register on the higher end because you have more follicles per square inch of scalp.  The more follicles you have the thicker your hair is and the more hair you can loose naturally thru hair's natural growth cycle. 

Stress can also cause hair loss, and as you sound extremely stressed out about this, the stress could be the culprit.  Unless you are balding in spots, a.k.a. Alapecia Areata, I would say to try and stop stressing about your hair's natural growth cycle. 
Take care.

Hi GA1964-0 I appreciate your feedback, however, It is not a "natural growth cycle".  My hair is not growing back...  So far. 
Every morning about 50-60 hairs comes out in my hands (just touching or patting it) and another 40 or so through combing- and that's just the morning.  The hair loss is all over- longer hairs, shorter hairs etc...  I stopped taking the minocycline a couple of weeks ago to see if that might be the culprit, however the hair falls out unabated.  It's the ATRIPLA.  I am not any more stressed than usual and definitely take my vitamins and exercise (to stay fit and relieve stress).  My hair is falling out and it is in an unnatural or not typical way for me.  When hair fell out previously it was just a few here and there.  Now you can see my scalp through my hair,  NOT normal hair behavior for me.  ATRIPLA causes hair loss- for me anyway...

[youngpozwm]

Papillon - I've noticed you've been posting a lot lately about all these things you're experiencing. Have you gone to your doctor? You've also mentioned in previous posts that you suffered from rosacea and hair loss prios to getting on HAART. Either way, I think you're best served by seeking the advice of a doctor and not just coming on here scaring everyone out of taking ATRIPLA or other meds when so many others have had positive experiences with them.

[phildinftlaudy]

Papillon - I've noticed you've been posting a lot lately about all these things you're experiencing. Have you gone to your doctor? You've also mentioned in previous posts that you suffered from rosacea and hair loss prios to getting on HAART. Either way, I think you're best served by seeking the advice of a doctor and not just coming on here scaring everyone out of taking ATRIPLA or other meds when so many others have had positive experiences with them.

Hark!  Do I not hear the sound?  Yes, the sound - of covers being pulled???

[Papillon_44]

Papillon - I've noticed you've been posting a lot lately about all these things you're experiencing. Have you gone to your doctor? You've also mentioned in previous posts that you suffered from rosacea and hair loss prios to getting on HAART

Ummm, clearly you HAVEN't been reading my posts carefully.  I have NEVER had hair loss prior to my taking ATRIPLA.  And this is the first time after being HIV + for 23 years that i have needed to take any medication for it.  This is the first and only drug i have tried.  You get a C- for reading skills...

Are you an employee of the drug company that manufacturers this product?  I sometimes thin drug manufacturer representatives are trolling this website to down play negative effects of the toxic drugs people take.  LOL!

Yes I have gone to my doctor(s) as my posts indicate. 

[phildinftlaudy]

I sometimes thin drug manufacturer representatives are trolling this website to down play negative effects of the toxic drugs people take.  LOL!

Last time I checked HIV is more toxic then hair loss -

But, that said, if you really feel it is the Atripla, maybe see what other regimen you might be able to go on that might not have this side effect (if the Atripla is causing it). 

Because I have regular genetic hair loss, I really can't speak to whether Atripla causes it or not.  I don't see anything in the medical literature about it - as I stated before in this thread.  I do not that the med you were on for the roseacea has been known to cause hair loss - I know you quit taking it and said you were still experiencing the problem - but sometimes it can take awhile for the process to be reversed - if it can be reversed at all - particularly because hair follicles are dead cells (very layman terms) - just like when someone dyes their hair, it takes time for the dye to grow out based on the length of the hair follicle, etc. -

At any rate, your situation seems to be far from the norm - if it is the Atripla - thus, the drug may not be the best for you, but for thousands of people this would be far from the truth.

Best to you and hope you get it worked out.

[colt]

Almost two weeks into the Atripla and my face is blotchy (not a rash) with sores and Rosacea!  Help!  Anyone experience this?  Also- I have thick hair that never falls out and breaks now every morning about 30 or so hairs fall out!  Is hair loss permanent?  Is my face permanently disfigured?  I have gone 23 years without having any symptoms and now that I've started this medicine (Atripla- tenofovir (Viread), emtricitabine (Emtriva),  efavirenz (Sustiva)) I have all these weird things happening to me. 

Frankly I'd rather be dead in a coffin than go through life with a blotchy disfigured face and no hair... (Baldness does not run in my family- I have had thick full hair all my life as did my dad and both grandfathers)…
...Have a blood test for sypillis......it is the great imitator of many things...what your describing are some of the signs

[colt]

Have the blood test for SYPHILIS...it can be the great imitator of many things.  This STD is making an unfortunate comeback...
What your describing are among its many symptoms...

[Tempeboy]

Ummm, clearly you HAVEN't been reading my posts carefully.  I have NEVER had hair loss prior to my taking ATRIPLA.  And this is the first time after being HIV + for 23 years that i have needed to take any medication for it.  This is the first and only drug i have tried.  You get a C- for reading skills...

Are you an employee of the drug company that manufacturers this product?  I sometimes thin drug manufacturer representatives are trolling this website to down play negative effects of the toxic drugs people take.  LOL!

Yes I have gone to my doctor(s) as my posts indicate. 

How did your appointment go?  Were you able to discuss alternative medications with your doctor?

[lmdo]

Hi,
I also had hair loss when starting Atripla.  I have never had any heaiur loss and it started coming out really quick over the forehead region. It has stabilized however, it is still coming out - I think it is either the Atripla or else my doctor reckons it was IRIS - Immune reconstitution syndrome. But it is still coming out 3 months later. I am not concerned with it. I am 36 and always had thick strong hair - even my hairdresser noticed how rapid the change has been. I am resolved to it.
My CD4 came up from 220 when I started meds so it might be this..
I'm sure the listed side effects don't include this but not to say that individuals do not experience things like this. Compared with other side effects I am resolved to the fact that it is not as bad. I have to say though, initially it was very very distressing. On top of the sleeping problems and dizziness.
The dizziness has settled though. I never got a rash or vivid dreams.
Thinking of starting to take it in the mornings to get better sleep though...