Glad to hear you are doing better, is he considering another alternative for you ?
I was slipping into shock. Couldn't breathe. Body one huge rash. Rather like being lit on fire. A great capacity to focus one. Like a meditation. Just got out of bed today since last Thursday when I took my last Riba dose. Hepatologist said it was one of two worst reactions he had seen in 15 years. Sadly my blood work was great. ALT/AST virtually normal. Platelets up. Only hmglb took a dive. LOL..I feel purged. We did a viral load today just out of curiosity. Thanks to all for wishes and responses. Such a great support. Take Care..
Sorry to hear about the reaction, get better .Like the others said ,maybe there might be all oral trials coming out in Montreal. I am waiting to see myself . Good luck.
The only person I knew who had true allergic reaction to IFN had anaphylactic shock (the type you need epinephrine to keep you breathing) immediately following his first shot. I haven't heard of this happening for years. May have had something to do with the IFN alpha 2b that was being used in 2002, as my gastro was also wary of this and made me take my first shot in his office.
At least you can rule out Incivek since you was not on it. Good luck to you, as will said maybe one of the oral trials.
Hi Don,
Sorry to hear about your adverse reaction to INF. and /or Riba and having to cease treatment..
Hopefully the skin reaction starts to clear up quickly for you once stopping both drugs,however something that a dermatologist should have a look at if this does not happen sooner rather than later.
Once you get this cleared up, I am wondering ,as far as future tx. goes ,if indeed it was the pegintron causing this ,what your doctors might think about trying "peg-Inf alfa 2a ". The biological properties of the two differ substantially in chemical structure and just possibly the same reaction would not occur.
If it was the Riba causing this severe a reaction ,then obviously a Riba free treatment may be needed,.
You have mentioned your are St.4 and I believe you are treating out of one of the larger centers in Montreal,so possibly inquiring about a trial that is not using Riba or INF.( if that turns out to be the problem) .
Hope this all works out for you and wishing you a speedy recover from the condition...
Will
When my rash got bad at week 10, I got a prescription for fluocinonide ointment."
That is what they gave me when I developed autoimmune eczema and almost ripped my face off in anguish. It helped stop the itch almost immediately.
Incidentally, my docs consider this an allergic reaction to the Riba. They have run some other tests (ANA and ENA) to see if I have a connective tissue disorder (since my rash bump biopsy showed possible connective tissue disorder, as well as drug allergy, and other stuff).
I am very sorry to hear that you had to stop treatment. However, I understand why. It sounds like you had one of the bad allergic reactions to either Incivek of Riba and I know bad allergic reactions to drugs can be life threatening.
I can tell you what I am using for my rash. First, let me say that I had only a very, very minor rash from week 1 to about week 10, just a few red bumps here and there which hydrocortizone cream toko care of. About week 10 the rash decided to take on a new form. It was bright red, itchy, on my thighs and forearms mainly, ran together on my forearms , and piled up (like cauliflower, just not as bad)). I have since cleared up the forearms and thighs, mostly, but it moved to my upper arms and lower legs and abdomen. Now, I am in week 19 and the rash is still a problem, but it seems to be a somewhat controllable problem, unlike yours that escalated rapidly and covered your entire body.
When my rash got bad at week 10, I got a prescription for fluocinonide ointment. It is quite a bit stronger than the over the counter stuff and it is an ointment so it stays on the skin. It is a steroid ointment. I was also taking Benadryl at night and zyrtec in the am. After I saw the derm. doc. I got a prescription for Hydroxyzine which I take at night (2 tabs each night). I can tell you that the fluocinonide ointment made a difference right away by stopping the itching and it eventually cleared that cauliflower rash on my forearms. It clears the other areas pretty well too, although my lower legs have some stubborn areas. I should have had the hydroxyzine earlier. It has helped a lot too, both itching and reducing the rash.
I think if I was you I would ask for a prescription or two, for ointment and for something like hydroxyzine. They do work a lot better than the over the counter stuff. (I think hydroxyzine is over the counter in Canada. Seems someone said that recently.) I might ask, have the docs considered oral steroid meds. If your rash is severe, you may need them and it won't matter since you are off the meds now (unless they are waiting for the meds to clear in your system).
I surely hope your rash clears up soon. It is miserable but also worrisome.
Inspirational. A tough guy. Yet no matter how tough you are an allergic reaction can kill you. For me time to look at alternatives. Thank you for response. .
Might try this
From MrRon Oct 07, 2011 .To: Everyone.
Sunday Oct 9th will be my lasy day of Incivek.. What a freakin ride... For your itching,blister's,hive's.......I got you covered..! Benadryl make's my skin crawl.. Nothing worked... OATMEAL ...!!! That's right plain old *** damn Oatmeal.. Take a cup of Quaker put it in your little hand held food processor with two tbs of Corn Starch.. Mix that baby up into a powder. Get a small bowl and maybe a pop stick. Mix it to say baby food consistency with water,little at a time - spreadable not runny otherwise you'll have yourself a real mess.. Spread on a layer with the pop stick or just your finger's. . Let it dry on your skin for 20 to 30 min. Don't touch it.. It may burn at first ,but that's the bad stuff gettin sucked out. Then it's gonna itch.Don't touch it.. The reward's coming. After it drie's stand in the tub or better yet go outside and rub it off. Try not to let the nieghbor's see ya ha ha . It will be rough and and you'll get to scratch... Rinse with cool water or a wet towel. If you get another spot paste it on there.You'll see those rashe's start to dry up within a few hour's.. You can even throw that whole cup into the bath tub and soak.. I mixed some up and kept it in a sealed container on the kitchen counter.My worst month was #2.. People don't realize how bad this disease can be.. The head trip alone can kill you. You don't feel right,you don't think right. It get's scary.. In Aug. 2005 I was in the hosp. with end stage cirhosis. They told me to buy a coffin I wasn't leaving.. I was 44.. Well I told Dr. Death to " STICK IT "...!. I'm still here. I responded to the Inciveck within the first month.. NO HEP C..!!! The road back was Horrific... What I did was a miracle,no lie . It would have been far easier to have just died. FORCE yourself to do something, walk ( I must have walked a million mile's at all hour's) rock in a chair,cut the grass. Move slow if you have too. Your gonna have to reach deep down in your gut's.. DO IT.. You'll feel better.. If there's anything I can help anyone with ,drop me a line.. I'll tell you what I know.. Fact's not fiction.. This disease really suck's....!!! Got it before I was even 20..?????
I used search engine and checked previous posts. Colloidal oatmeal, Gold Bond, benadryl, nothing touched this even remotely.Tried all. I'm glad I stopped treatment it was poison to me from day 1.My body knew. Time to get healthy and enjoy the moment. Be in the moment.