Tuesday, 16 August 2011

day 15

This was the first morning I slept in since acquiring the rash, and although my hands and feet were still a bit itchy, the itch was a shadow of its former self.  The last areas of the reverse of my forearms had virtually been covered, so the rash was ready to fade from me completely.  It looks worse than it felt, and I was able to shower normally for the first time since the rash began, using hot water.


My hands continued to itch a bit throughout the day while I typed this blog, but only in the manner of pinprick itches.  The reverse of my forearms steadily faded to almost nothing by the end of the afternoon, so I feel confident in stating that this Atripla rash is over.  


It took 8 days to arrive, and 8 days to resolve.  I'll continue to take my antihistamine and steroid medication until August 18 (i.e., day 17), but I fully expect that I'll be able to discontinue all medication other than Atripla after that day.

I'm feeling much happier, healthier, and in control of my health already.


*************

[March 2013 postscript: For those who are interested, my viral load dropped to undetectable levels within a few weeks of these photos and has stayed there.  I work full-time in another city, and get Atripla mailed to a pharmacy near where I work.  My CD4 count has steadily risen and then held at a mean of 900.  All my other blood parameters and ratios are normal and steady.  The only health complication I've had since this rash was shingles down my right arm along several dermatomes, which cleared up after a week, and a few spots of erythema multiforme near both elbows, which appeared a few weeks before that and faded away quickly.  I continue to enjoy occasional vivid dreams around once every week or two, and they're never unpleasant.]

40 comments:

  1. thanks for your blog; I'm experiencing similar symptoms

    your outlook and in sight are admirable

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  2. Glad to help. I'm now on week 10, and I have no more symptoms taking this medication. My viral load was zapped down to undetectable by around week 6 (from 330,000/mL before I started), and all my pre-infection energy has returned, which I put to good use in the gym. I've experienced a few interesting dreams, but nothing disturbing, and aside from that, no other symptoms. Taking my "power pill" each night is just a habit now, and it's really as if I'm just taking an aspirin. The whole issue of HIV is, to all intents and purposes, under control, which was my aim in early treatment, so it's now relegated to just a secondary part of my life - like any other STI that can be controlled with medication. See it through if you can, and take whatever medication you need to get you through it - it's well worth it once you get to the other side.

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  3. thank you so much, for the hope.

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  4. You are welcome! I'm really glad this has been useful.

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  5. I'm glad to have come across this blog. I've been doing so much searching for something like this, and I didn't come across your page until I did an image search on google.
    I'm having a similar reaction, but it seems that yours was a bit worse.
    Seeing what you've gone through, and reading that you've continued the Atripla helps me to be less fearful of my next dose.

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  6. You'll be fine - just ride it out. It's very easy to forget this ever happened. I still get the occasional vivid dream, which is really nothing and easy to get used to. Otherwise, I'm exactly as I was before, and looking better than I have in 10 years (thanks to better diet, exercise, more sleep). I'll try to find a way of tagging this blog so more people can find it with just a regular word search...

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  7. Its really nice to share your experience. I see that you're doing well. Me myself on day 3 tonight have experienced nothing at all except the fact that I get a really deep sleep at night full 7-8 hours to feel rest. Can you share more info on your diet or exercise plan you follow? My doctor mentioned nothing on this and I'm trying to avoid any long term effects by any means. Thank you very much

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  8. Fantastic blog. My friend became infected with hiv last year and has been trying different medications. He suffered the same experience as you but didnt stick with it and instead changed medications. He is now taking 5 pills a day. You're blog is insightful and interesting. I wish you all the best.

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  9. Anonymous: thanks very much!

    Grekow: I've been thinking about how to reply, because it has changed over time, and I don't necessarily advocate that my current way is the best way - it is just what has evolved, and I think I can do better. A few weeks after the rash went, I went to the gym 3 days a week, followed by 1 km at the pool, and pushed myself as hard as I could in these sessions - I was just happy I was undetectable and wanted to build up muscle to improve self-image and keep my lymphatic system moving quickly. I continued this for a few months, then hit a busy social patch and stopped around Christmas/New Year. I went back again less regularly in January, but after finding that over time, I was losing more weight than I wanted due to the constant pressure to keep up a very high calorie replacement for the calories I was burning up, I eased off to be kinder to my body. I should get back to regular exercise again, but spending time finding a new job has been a higher priority. To answer your question, although I don't currently follow an exercise plan, I know I should, and it should be 3 days a week as before.

    My diet: I focus on a variety of locally grown "whole foods" from the market - lots of fresh fruit, raw nuts, various forms of protein (meat, fish, dairy, eggs), and whatever vegetables I can get, particularly anything green or red/orange, and fresh herbs. I have fresh blueberries and strawberries on untoasted muesli every morning. I've learned to enjoy water more, and may have an occasional glass of wine with an evening meal. I prepare over 95% of my meals. I used to be paranoid about food containing chili and MSG, but I don't think we need to be if our test results show normal parameters - however, I still don't have a really hot chili meal (e.g., Szechuan) more than once every few months. I never have soft drinks (sodas) or fruit juices, only very rarely have chocolate or processed biscuits, and keep pastry to minimum - basically, I try to really limit intake of white sugar, white flour, white rice, and anything else that will stress my liver and pancreas... although I don't rule it out altogether, because I don't want to feel it is "forbidden" and then start craving it. I slice up fresh ginger and add it to tea (chai). There's a lot of advice on the internet about the best type of diet we can follow; I think it's a matter of adopting things gradually into your routines so that ultimately you find yourself choosing a really healthy diet without thinking about it and not feeling you are being forced into it...it's about improving your human experience, not feeling you have to do it because of the virus.

    A final piece of advice: we simply have a chronic condition that can be easily managed, like many other STDs, by medication. People with treated or active herpes don't go telling non-sex partners they have it, and neither should we feel any pressure to do so unless they are a specialist doctor or the subject of unprotected or repeatedly-protected (i.e., LTR) sex comes up - and even then, we should feel no more stigma about it than someone else with a potentially infectious STD. "Disclosure" should always be on a "need to know" basis, and after I initially told two best friends a year ago, who live outside my current country of residence, plus a new specialist doctor and dentist, and my "newly diagnosed" HIV support group, I have not run into any situations that required disclosure. You have enough to think about and manage - don't add the worry of gossip to your list. I haven't felt any need to tell my family (they wouldn't tell me if they had an STD), and if I want to talk about something HIV-related, I'll call up a friend I made from my support group last year. I fully expect this "new normal" to continue for decades.

    I wish you the best, and an improved human experience as the ultimate result.

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  10. glad I saw your blog, with the pics so that I know what to prepare and not to worry too much

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  11. THANK YOU SO MUCH for this blog. I am going through this exact experience and still in the midst of hell. But you have given me the hope and inspiration to see it through!

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  12. I can't see your photos on my IPad but will look on my main computer at home.

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  13. Hi , what software do you need to be able to see the photos on an IPhone or IPad? I'm on day 5 of rash, still suffering! I would like to compare mine with yours as it sounds so similar!
    I tried your wet, cold towel idea last night and wrapped my feet in it. This gave at least some initial relief and two sleeping pills spread through the night gave me my first night of rest! If I can't get to see the photos, is there any possibility of emailing them?

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  14. Thank You for this! I am in the midst of a bad Atripla rash myself, 4 days in and tonight I felt like it was getting better, I hope I wake up tomorrow to find that I'm right and not that it will get worse again.. I'm pretty much covered all over apart from calves , hands and feet. I read your blog every day now since it started just to calm me down!

    :)

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  15. I am going on day 12 with Atripla and it wasn't until yesterday that I began to show signs of a rash. At first I thought it could be hives especially since I'm dealing with things causing my stress level to be higher than normal. However, when my rash didn't seem to get any better and start to worsen I knew this wasn't hives. In an attempt to find any possible information that could explain what in the hell was going on, to my benefit I came across this blog. Words can not express how grateful I am for the individual who took it upon themself to document their experience with the hopes of helping out other individuals dealing with the same thing! I am making an impromptu visit with my specialist in the morning and comforted knowing I have a better understanding of what is going on and what I may expect when we meet. I do have a question though. Is this type reaction to Atripla normal, or does this fall in line more with the in "rare occasions"? Never-the-less, thank you and to those who have posted before me for bringing me a sense of peace!

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  16. Thank you for posting your journey through the rash.
    I started Atripla 9 days ago & the rash appeared on the morning of the 8th day. While its nowhere as bad as yours, it is still noticeable, mainly on the neck, back & torso to the knees & wrists. With me it seems to come in waves, fading to almost nothing then back bright red within a pale area. My doctor has put me on an antihistamine - Phenergan (2x10mg) & cortisone cream. Hopefully it will control it quickly.

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  17. Hola estoy pasando por momentos asi como el tuyo, empeze atripla hace una semana y ayer el 8 dia empeze con alergia y el dia de hoy me salio un poco mas, no se ve como te paso a ti pero si me salio y me siento algo triste veo que poco a poco se te fue pasando y hoy en dia llevas una vida normal me pongo triste un poco espero puedas contestarme soy de mexico y tu blog me da energia para que siga adelante

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    1. Alex. Yo tambien soy de mexico te gustaria charlar ? Tienes correo?

      Delete
  18. Glad to help - the aim of this short blog was to help other members of the community. Look after yourself, and stay happy - you'll come out the other side a stronger person, believe me...

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  19. thank you for that

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  20. Last year this time, I went on a Atripla PEP kit. It was the worst experience of my life.

    Luckily I did not get rashes or any visible signs that Indicated that i was on the meds. But boy, let me tell you, the mental agony that I had to deal with. The first day was ok - i felt high for 2hours then crashed like i was coming off a bad trip. The dreams was horrific - i woke up almost ever night in tears about my dreams. If it wast "cinematic" dreams it was like something out of a Stephan King book. Then the depression kicked in... I felt dead inside. I was negative and grumpy all day. Every time i took my meds, it felt like i drank to much. but that i learned to control by not eating before i take my meds. Your symptoms lessened on a empty tummy. once or twice i didn't have any issues after taking my meds.

    Then the suicidal thoughts, that was normally right after i woke up from bad dreams. But it helped to have that one friend that i had that i could phone day or night any time to speak to, he really calmed me down. The flue like symptoms was also a big thing but that the Dr. also explained could be a number or things not just the pills. All that aside, the stress of being MAYBE hiv positive was also hanging over my head that caused more fear so that didn't help.

    A month later i was finally of the pill and tested negative, another month went by and again negative and then the 3rd month - negative! I was so happy i burst into tears!

    In reflection - this whole ordeal made me wiser in STD's, HIV and people living with it. Its amazing how much tv ads and print campaigns we get thrown with but when you in that situation you have no idea what to do or whats going on and whats going to happen. The number one thing i can tell people and what i have told people is STAY OF GOGGLE SEARCH! The internet scared me more than anything. Every time i google searched a symptom i was convinced i was Poz. And every time i opened up a google search i would find the most revolting and discouraging images of people with HIV that i had so much FEAR in me that it metal has scared me for life now.

    Life after ATRIPLA - The only side affect that seem to have staid was "warm ears" i get that every so often. Dr. cant find a reason, some say its a allergy and some say its something that was activated with Atripla.

    Im happy to report that to my knowledge, I'm still HIV - and have become a "big brother" for people experiencing Atripla for the first time. My best friend is currently one Atripla after a condom broke and he has been phoning me 4 in the morning every night to "calm the nerve".

    Thank you fro sharing your story and giving people the hope to stick on a path of recovery and helping people fight the fear that comes with this pill.

    JJ

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    1. I just started the medication my CD3 was 200. I started 2 weeks ago and I have had some vivid dreams but they are not as intense as what you described. No suicidal thoughts or anything like that but feeling tired of all time. I am also a diabetic so I am not sure if it is messing with my blood sugars.

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  21. Thanks for the posts. I started atripla a little over 4wks ago and the first two weeks my anxiety was EXTRA high. I couldn't even be around anyone. I used Xanax for about the first 3 wks and that has subsided, thank goodness.

    Now, the rash! After two weeks of the high anxiety and now what looks like worse than puberty on my face. It's only on my face but its not getting better. I have called my Hiv doc and I will ask her about the antihistamine and steroid till I get thru this. Thanks again for the posts. It helps my a lot to get through this mentally. Sometimes you feel like you're alone and I'm glad you are all out there. Take care, my friends.

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  22. This comment has been removed by the author.

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  23. I just started this medication 2 weeks ago. I was wondering when did your rash start?

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  24. Wow. Thank you so much for this blog. I am a black male who went through the same issues as you did. I could tell that my skin was getting darker and a rash developed as well. Since I'm already dark skinned it was hard to tell if you weren't looking at me daily. I itched so bad i felt like i could not function. I cried because it hurt so bad. It felt like needles of fire all over. I became stressed out, i lost my dreadslocs in the matter of 30 days that I have been growing for two years. My skin became flaky all over. Creams and lotions burned. To this day my skin color had not returned to lighter and still have the itchy skin at times. I try not to get hot or over work myself because it causes the itching to start. My hair has grown back I always knew that all of this was medication related, but my doctor did not seem to think so.

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  25. I know its probably too far in the future and nobody reads this anymore but i'd like to thank you. your blog helped me cope with this rash which was stressing me out. I am from South Africa and am now 19 days into Atripla as PEP. on day 10 I developed a rash and the symptoms were exactly like yours. Like McJane said I was freaking out as I didn't know if it was the Atripla, ARS rash or what on top of that have to deal with he stress that I may or may not have HIV. my rash was worst on day 13-15 I'd say. It was so itchy I was sleeping like 2-3 hours and calamine lotion just seemed to make it worse. it went away on day 16 and now I feel fine except for some flu like symptoms which are also stressing me out. Anyways Thank you so much it's so comforting to know that I am not alone as I cannot discuss this with friends and family so the internet is really all I have. Although I am praying I test negative after this atleast I know now that a full life is possible even if my results come back positive. I hope you are still well.
    Regards,
    SN

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  26. Thanks, SN, - glad it helped. It's close to four years now, and I'm still well. I've remained consistently undetectable, with normal results in all other blood tests (which are every six months when I get a new prescription). My life returned to normal surprisingly quickly, as I trust yours will, and I'm still on Atripla by choice - it's really just like taking a multivitamin before bed. Since I started medication, I've probably missed around one dose per year - usually after I had returned from vacation and was getting my usual routine back together after jetlag. I've had no other medical issues since this rash, with only very occasional vivid dreams that are usually interesting and sometimes enjoyable...a bit like being in a movie. I get my medication sent to my nearest pharmacy in a batch of several months, from where I pick it up during my lunch hour. I've been working full-time since my rash subsided, and am now arranging to work overseas again for a few years (will be buying generic medication when doing so).

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  27. Hi!

    I was just diagnosed with HIV mid-March of this year with a CD4 of 140 (a retest resulted in 294) and began taking Atripla on June 1st. Following the 8th dose, just a couple of days ago, I woke up with a speckled rash down my arms, on my wrists, and on my chest/neck. Since then, the rash has progressed quite a bit (although nowhere near the severity of yours) and it only just dawned on me today that I should be in contact with my HIV doctor. Instead of having my call redirected to the actual doctor, I was instead transferred to a nurse who relayed my concerns for me. The orders I was given were to immediately stop taking Atripla altogether and to begin Benadryl until I can see the doctor 1 week from today! I'm no expert about any of this, but I have done enough research to learn that interruptions in HIV medications can cause resistances very quickly. I'm only 21..and while this diagnosis has completely turned my world upside down, I am so fortunate to not have any resistances. I've heard of doctors transitioning their patients to different medications to isolate the issue, but the general consensus online seems to suggest not to stop medicating completely. I know you're not a doctor either, but I find it very inspiring that your much more severe experience did not stop you from continuing Atripla. Am I crazy if I disregard the doctor's orders and continue? She hasn't even seen my rash!

    Also, within the past few days I have been celebrating my boyfriend's Birthday and have not stuck to taking the Atripla on an empty stomach. I've also had a bit of alcohol before a couple of my most recent doses. Prior to that, I was extremely good about following the orders not to do these things. I'm thinking it's possible that the flareups are a result of the increase of Atripla in my blood.

    Sorry for the wall of text. I'm just at a crossroads and really feel as though I should go against my doc and continue on the meds (with Benadryl) until I meet with her one week from now. Any advice would be amazing and so greatly appreciated! Thank you

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  28. Sorry to hear about your rash and of the unavailability of your HIV specialist. The "8-day rash" is something that all HIV specialists should warn those new to Atripla about, going from the number of hits this blog has ended up receiving (36,000). Your HIV specialist should also have made arrangements for follow-up if you needed it on the 8th day and he or she wasn't available - that first month is important for anyone going on lifelong medication, and I don't think they should just hand you over to a nurse over the phone. If your doctor was too busy to see you, they should have given you the contact details of which HIV specialist you could see.

    Having said that, I'm neither a doctor or a nurse, and all I have to offer is my experience of almost four years. With regard to the rash, you should see someone medically trained, as they need to determine whether you are having an allergic reaction or not - treatment options will depend on whether it's just a rash or something more. As your rash is not as bad as mine was, it may just be a rash. But if there is a "target" look to the spots, if they are raised with fluid, or if you feel the rash may be on the inside of your mouth or throat, for example, you need to be seen immediately. I made sure I had none of this as the rash progressed, although I did see an HIV specialist as soon as possible to be sure (and also to get some antihistamine, which I don't think ended up having any effect). From my limited experience with that rash, I suspect yours will just burn itself out 8 days after it appeared - that's what happens in most cases, and I was confident mine would as well.

    From experience actually taking Atripla, my body adjusted quickly after the first few weeks, and for the last four years, it has just been like taking a multivitamin at night. In your case, although it's good to get into the habit of taking it on an empty stomach as recommended, I doubt that it will have anything to do with the rash (for example, I got the rash and I had been quite strict about following the recommended guidelines.).

    If I was in your situation, I'd call the clinic again, and ask to see either your HIV specialist or another HIV specialist (if there's no other HIV specialist, ask them to recommend another one you can see while yours is unavailable). Although I would consider their recommendations, consider the experiences of others as well, listen to your body and don't stress too much. From here on in, you and your HIV specialist should be a team, and you might consider switching your specialist if you don't think you're getting the level of care you would expect. Another great source of information, if you have access to it, is the People Living with HIV support service in the city you live in. They can also give you the next date of a Peer Support group, which I'd also recommend if you haven't been to one already, and alternative HIV specialists who have a good reputation within the community. All the best!

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  29. I cannot thank you enough for replying. Right when I saw "30 comments" instead of 29, I was overjoyed. Just now getting time to write back, but it's all good news! Sure enough, after 8 days the rash began to fade out. I still have very slight discoloration from where the splotches were, but they too seem to be fading. I also saw my HIV specialist yesterday and she was flabbergasted that I didn't go off of the Atripla like she had asked. She thought the slight discoloration left on my arms was still reason to take me off, and I had to literally argue with her to remain on my regimen. She feels that any form of medicine rash is my body asking not to be on that particular med. I told her about stories such as yours and it seemed to kind of shut her up. Other than the rash, I am loving the ease of taking Atripla.
    I am scheduled for followup blood tests 4 weeks from now and in the meantime will be shopping around for another specialist in my area that I can feel more comfortable working alongside.
    Just another quick question for you... has Atripla caused you any sort of lipodystophy or other changes in body fat? Have your liver and kidney faired well on this regimen? I know that it probably doesn't have any scientific backing, but I can't help but worry that the rash indicates an increased risk of other complications down the road. I would love to hear how your body has responded since.
    Thank you so much again. Throughout this nightmare of starting meds and experiencing the rash, you've really helped me to remain mentally sound. Your replies are very kind and inspiring as I try to work through all of this :)

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  30. I'm glad to hear your rash faded, and that my experience may have been helpful in your decision. I too had some pale discolouration on my legs but this faded in a few weeks. I don't believe Atripla has caused any lipodystrophy in the four years I've taken it, and I can say the same for others I know who have been on it since it was introduced in 2006. All my blood test results remain in the centre of normal ranges, indicating business as usual for my liver, kidney and other organs. The "Day 8" rash is not unusual for Atripla (at least), judging by what I've read on the internet from the experiences of others, but there is no connection between this initial reaction and any long-term organ effects. S100 prescribers just need to know about it, alert anyone about to take this medication that this may happen, and understand when a rash is dangerous and when it isn't. Having said that, one thing I've learned is that each person's immune system often has an individual response to something like this, as does their metabolism, so the experiences of others is only a general indication - paying attention to how your own immune system and organs work with the medication is the most important, as I'm sure you're aware. I guess that's one reason I've elected to stay on this medication, even though there are now several other very good HAART alternatives on the market. Because the alternatives are relatively new compared with almost a decade of experiences with Atripla, I'd like to monitor the collective wisdom of 5-10 years of others on those medications before I contemplate a switch (which at this stage would really be just change for the sake of change).

    I think there may be some risks of changing meds too often as well, or unnecessarily. As a new medication builds up in the system and the current medication trails away, I don't want any virions getting a comfortably low dose of Atripla, safe in their own reservoir in the brain, for example, and mutating to become immune to it. It's not a likely scenario, but I see no reason to play with change for the sake of change when I have found something that works so well for me right now.

    By the way, there are several secret Facebook groups where you can ask these and other questions if you don't have ready access to a local HIV Support Centre (or in addition to it). One active group I know of consists of 1000 members of all orientations - it includes many who have successfully lived with HIV for several decades, and are still going strong. Again, all the best.

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  31. thanks for your blog and it help me alot to understand. I had that for 1 week and it began to clearup after 3days.

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  32. Hello, today is my 9th day taking atripla, and I woke up with a rash all over my thorax, shoulders, neck and little bit on the inner arms and wrists.
    Finding out I was HIV positive was a very traumatic experience, but after a few weeks I was starting to cope with it and starting my treatment, I had a very positive attitude that everything was going to be fine...

    And now this rash appears, it has me brought down to tears and anxiety again...thinking that things might actually not work out for me...

    I called my doctor this morning hoping that he would say that the rash was a common side effect, but instead his first response was "ok we have to change your meds" which really frustrates me...I've been googling all day about rash and atripla, some say it is normal others say it is not.

    I'm scared, I was not expecting this kind of reaction...

    Your experience gives me a lot of hope, today has been a horrible day for me...I just hope this rash passes by and I can continue with this med and a normal life.

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  33. Hello!

    After all these years are you still on Atripla? Has it had long term secondary effects on you?

    Regards.

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  34. After almost 6 years, I'm still on Atripla, and I've had zero secondary effects from the medication - it's still as easy as taking a multivitamin before bed. All my blood tests have stayed within normal limits, and I have averaged a CD4 count of around 1000 for the last 5 years. From personal experience, starting medication soon after I discovered I was positive was the best thing I could have done. I've been asked if I wanted to switch meds to something 'more modern', but Atripla has worked for me so far, and I prefer to stick with it for now. I might reassess this once I get to the 10-year mark.

    NB: Now that there are less and less people starting on Atripla as their first medication, I'm thinking of deleting this blog...I might do this on my 10-year anniversary in 2021.

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  35. Please don't delete the blog. I recently started on atripla after 10 years of being positive and having a steady and good cd4 count. With the change in WHO guidelines, it is not recommended that everyone who tests positive is on medication. My rash started on day 9 and really got me down:( It got worse on day 10 and I went to the hospital but my specialist wasn't available so I saw another doctor. I told him I thought it was a reaction to the atripla(after much go ogling) and he said it might also just be an allergy to something else (which now I know it's not).
    I have it all over my inner arms and thighs but not as bad as yours and my ears are burning. I am just hoping it does not spread to my face because I can't take time off work. I am really grateful for your blog because I really was going down a dark depressed path. I have never in my 10 yrs since my diagnosis been taken ill. I went through a dark patch when first diagnosed but have tried to live a positive life since. This rash was going to be the first "illness" to get to me but for you blog. Thank you Sooooo sooooo much for taking time to write it.

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  36. Meant *now recommended

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  37. Please do not erase it.
    Long life to you.
    My question is when these effect fade out..
    I am all the time tired and feel very weak have diffuculty to breath and problems to move as before.. I am on atripla 21 day now

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  38. Hello,

    I hve been on atripla ( virday) as we take the generic one. After 9 pills the rash started yesterday called my dcotor told me to take zyrtec at night and xyzall 10 mg during daytime as well i biught a cream called fenistil. Today is my second day in the rash doenst look as bad but in back it is really red and have few red spots on my arm and some on my chest. How long it took to fade away with medicines

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