POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: AgilityAddict on July 07, 2012, 07:09:25 am
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Hi everyone
Please can anyone with experience of severe Atripla rash give feedback and/ or moral support as to how long it can last? This is the first time I have been treated in 17 years of being positive! The skin reaction started on day 7 and has got worse over 4 days, spreading all over my body. Steroids and an array of 4 different types of antihistamines are not making a difference. I'm persisting with Atripla as I don't won't to lose this potential great option as treatment. However I feel worried and a bit demoralised and need an idea of how much time I may need away from a demanding job as I look terrible and feel like peeling my skin off!
Thanks for your advice and insights!
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Hi Agility, welcome to the forums.
You need to get in touch with your doctor ASAP - particularly if this rash is accompanied by a fever. It's possible to have a reaction to some meds called Stevens–Johnson syndrome (SJS) (http://en.wikipedia.org/wiki/Stevens%E2%80%93Johnson_syndrome) and SJS is nothing to ignore.
Good luck - keep us posted.
Ann
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Thanks Ann. That is a very valid comment and exactly what I was worried about. My medical team is now monitoring me 24/7, so don't worry, I have all their highly skilled back up. I have just found a blog elsewhere where someone describes virtually exactly what I'm going through, managed to get through the living hell of this severe reaction, with the medication being very effective in the longer run. So as long as I'm not seriously systemically I'll, I'm going to persevere. Keep your fingers crossed for me that this starts to resolve. I will certainly let you know how things go. Maybe you can use this also as advice if someone else goes through a similar difficulty. Once again, thanks for your excellent feedback!
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Just in case anyone is interested, the blog address I referred to in my above comment is: http://myatriplarashexperience.blogspot.co.uk/
Thanks
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Agility, it's good to know you're being closely monitored. Whew!
There was a member who used to post here who ended up with SJS from Sustiva - he very nearly died and was ill for weeks afterwards. It took forever for his doctor to realise what was going on and he finally caught it in the nick of time. This forum member successfully sued his doctor for malpractice. (He hasn't posted in quite some time - hope he's ok.)
If you start getting a fever or if your mouth gets sore, get yourself to A&E ASAP. Don't mess around.
Hopefully this is just a "normal" - if severe - Sustiva rash (Sustiva is one of the meds in Atripla and is the usual culprit when a rash occurs) and you'll be over it by Monday or earlier. Hang in there - and stop scratching! ;) ;D
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hi there,
sorry to hear about your rash, i hope it gets better and you keep in touch with the docs. i started out on Atripla and though i never got the rash, i got the neurological issues that come along with it.
I had difficulty sleeping, after about 8 months on it my left hand and arm started going numb, then my feet followed suit. something in the Atripla was causing neuropathy symptoms.
The best thing i ever did was switch off and love my new medication, no side effects, the neuropahy symptoms are almost gone, just have little issues with the feet from time to time. I sleep better, less iritated.
i only take two meds now versus the normal 3, doctor cut out the travada all together, so just boosted prezista and isentress. I'm sure my liver thanks me as well.
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Thanks Mikey
That's helpful. My liver functions are also elevated but not yet dangerously so. Not sleeping and being irritable will be problems for me, at the moment I'm putting that down to this ridiculous skin reaction. So I'll let you know if I return to be a pleasant human being after (here's hoping) the rash eventually goes!
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Unfortunately the problems with Atripla continued. Skin rash still there even with lots of steroids but much more worrying, liver functions spiralling out of control. Went up from twice normal to nearly 12 times normal within hours. Medical team stopped it now to avoid further liver problem and hepatitis.
They have now switched me to Travada plus Etravirine (Intelence R is market name in UK) so fingers crossed, but have to be in hospital until liver recovers. Hope this goes better, it's been a tough road so far to starting medication. Not to put anyone off. They say I've been very unlucky and my reaction kind of catastrophic and the degree of it very unusual.
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Hope you feel better soon
Efavirenz is the drug in Atripla that's probably causing the bad reaction. Rash and liver problems are a side effect of all drugs similar to efavirenz, a group of srugs called NNRTIs. Etravirine is also an NNRTI, so if things don't get better perhaps insist on a change to a non-NNRTI based combination (I am sure the docs will do this anyway).
Good luck.
- matt
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Thanks Matt
That's exactly what happened! The medical team say they seldom see a rash on etravirine and when they do it is light. Well, with me it was severe and unbearable. Concerns were again raised about Steven Johnson Syndrome, so it was stopped after 9 days. Now on Truvada and Isentress (raltegravir).
Starting on medication has been a gruelling and unpleasant experience. I really hope I
Third time lucky, although my regime is now more complicated, taking pills twice daily at 12hr intervals!
Keep fingers crossed for this time!!