Hi, hope the rash isn't from Teleprevir - I'm on the rollover trial in the UK and got to week 7 before being taken off due to the rash - it's not like anything I could have imagined - it's as though I've had burning fat poured over me, every nerve ending on fire - terrifying. Guess this is the 'super rash' mentioned earlier. They've kept me on interferon, after a 12 day break, and I may get to go back on riba this week after a two week break if the rash has sufficiently calmed down (and if I'm still <25 which I was after week 3!). Chances aren't great, but obviously I want to give it every opportunity to work. I was supposed to be on it for 12 weeks, concurrently with standard treatment for 24 weeks. Last year I was on the Prove 2 trial but got the placebo, and hadn't had a 2 log drop after 12 weeks from the standard treatment so stopped then. Teleprevir is clearly a fantastic advance in treatment, and I know that several people from last year's trial cleared the virus (although one person was hospitalised from the rash as she developed a bacterial infection and had to come off after 10 weeks - but remained clear!). I'm devastated to have been pulled, but the rash - if it's severe - is impossible to deal with. It also involved massive blistering - quite medieval. They've taken a skin biopsy and given me steroid cream, but it's tough going. I'd put a lot of my hope into this trial and am feeling quite low at the moment. I wish you all the very best and hope you have much better luck.
Not being on Telaprevir but Int/Riba, I recently had a severve case of the itches. It was horrible.If the itching becomes unbearable you may want to call your doctor right away.Mine gave me Atarax and it helped a great deal.Just a suggestion. I hope you find something helpful to carry you through.
Toughluck you may be in for some toughluck. I was in the prove 1 telaprevir trial and my rash got REALLY out of hand starting at about week 7. Not everyone gets the super rash (only about 10%), but a good ~30% still develop a nasty and very miserable rash. You might be one of them, so get in to the doc ASAP and get some meds to control it. I had to take prednisone (an oral immunosuppressant) and stop the telaprevir altogether to get mine under control, but some got by with just topical lotions (and could continue with the meds). Don't delay or dally, get in and get yourself treated quickly. Don't sit back and let it flower into a nightmare. You can click on my name and search through my posts (dated around Sept-Dec 2006) for details on what happens with a super rash. Look at "prettydamscared" posts too, she also got it. Good luck, hope it settles down soon!
For the telaprevir rash you need the big guns. That means corticosteroid creams/ointments. Don't mess about with lesser treatments as that rash can crash you out of the trial. I had it and used Elocon cream which more or less controlled it. Your doc can write script for that or similar. (not to be used on your face though, your doc will advise). Don't delay, that rash is serious sh!t,
good luck
dointime
Sorry toughluck. You are correct. Didn't mean to offend. I just thought springfever's comment was a nice bit of graveyard humour.
Does the Riba rash usually show up so quickly?
Hope it gets better soon.
This does not mean it is Telaprevir, could be the riba, don't jump to conclusions please.
Yes!!! Ha! That is great news toughluck.
Now you know you are in one of the arms that gets teleprevir. Your odds of SVR just went up!
Good luck!
Don't want to scare you but my specialist told me that some people have needed to be hospitalized for the Telepravir rash. May not be that serious for you, but better check quickly.
btw I tried every lotion available and it did not work, it would get better at times but never cleared up. When I tried the auquaphilic it got better within a day and was cleared up within a week. I do not know if it is the same problem or if the solution will help.
I had the itch and rash very early on and they did nothing for me until they thought I was going to scar so they told me to see a dermatologist, he prescribed me auqauphilic and steroid cream, I really think that the Auquaphilic that you can get at any pharmacy would have helped, put it on ten times a day if necessary. The dermatologist said it was mostly dry skin... I have also at the end of 24 weeks become severely dehydrated so when they tell you to drink water drink all you can stand and more,, drink juice and gaterade also. to help keep your electrolytes up and to add something different to your liquid intake.
I will drink tons of water, see the doctor tomorrow, this bites I feel like I am catching on fire
are you on in the telaprevir trial? either way drink more water.
sounds like you'll need the big guns....Rx's for the itch exist so have your doc call one in for you. lotions like Gold Bond extra strength, or my favorite was to sit in a tepid bath with olive oil for a few minutes. Coating the skin to keep it hydrated, and using a humidifie both helpr, changing your clothes and sheets to 100 % silk or softest rayon or cotton are all helpful.
Usually the rash settles down for most...but the skin doesn't like Riba, so it can be insane to the nerve endings the first few weeks.
I found going to very short tepid showers
with non harsh soaps helped most. The more you can hydrate your skin the better but the longer showers and soaks dry out the skin so avoid the temptation. Sometimes it feels good to soak, but long term it dry out and makes things worse.
Don't use any bleaches, or antibacterials. This is a reaction of one organ, known as your skin, to the INF/Riba and trying to kill bacteria on the skin that exist there naturally will not solve the issue but further irriate already aggravated tissue.
MB
Are you on SOC or in a Telepravir trial? I was lucky not to have too much trouble with rashes, but I have frequently heard that catching the problem right at the beginning is the way to go. Can you get it touch with your specialist right away?