Stage 3 Incivek Rash

[DresdenO]

I've noticed its difficult to find good illustrations of a stage 3 - severe Incivek rash. I've developed one in the last two weeks and have posted a couple of photos to illustrate it on my personal journal as well as the one here. I go to the hospital in a couple of hours where I think they'll admit me, to monitor the rash more closely. I finished my twelfth week of Incivek on Monday. The question now is whether the rash can now be brought under control without suspending the interferon/riba for the next twelve weeks and I would welcome input from anyone who has had a similar experience. I understand the Incivek takes about 6 days to clear the body. I began treating aggressively with a heavy steroid cream last night and there has been noticeable improvement. I can provide more details of the dazzling array of medications I'm currently on if anyone is interested. I was UND at 4 weeks and waiting on the 12 week pcr.

[pooh55811]

I an glad you are out of the hospital and improving. I am hoping you will attain SVR even though you had to cut the treatment short.

[Carlhcv]

I just don't know what to say. That is a very scary story and experience for you. I'm glad you are doing better and wish you the best. (I'm on week 4)

[mzkity]

I was wondering how you were doing! Glad to here your on the mend. Well you know what I mean by that. A friend of ours told my husband the same thing about the RIBA. Keep up your labs. And pop in once in a while to let us know how your doing! Now take that trip to Paris! Good luck--kitty

[DresdenO]

Feb 27 update: I was finally released yesterday, 17 days after I was admitted - beating my previous hospital stay record by....16 days, ha ha. They kept me so long because the second rash took a long time to respond to the steroids but for the past three days has definitely been stabilized. Daily yoga the last ten days certainly helped, though I'm very weak and my body trembles chronically. Strange arhythmic heartbeats sometimes too.

Another week to taper the Prednisone to zero, then I'm just stuck with the still mind-bending side effects of the lingering Ribavarin, man that stuff hangs around. And the gross scabs from the rash which will take a few weeks to heal I guess. I met my liver doctor yesterday who advised staying on the antidepressant for the next three months, to manage the Riba sides. I'm not thrilled but there is no way I'm letting the Riba play with my head. Ever again.

[Advocate1955]

Yes, the problem is that when they are open, they can become infected.
Advocate1955

[coeric]

"Unlike the generalized incivek rash it is these discrete little ugly ulcers with ochre brown scabs, rather disgusting"

i had something like what you described after the prednisone had reduced the rash.  the dermatologist said it stasis dermatitis and told me to cover the area with vasoline and telfa bandages.  the hepatologists put me on an antibiotic called cephalexin.   after the scabs disolved the dermatologist had me continue apply the steroid cream, clobetasol, to the entire area.

eric

[DresdenO]

hm, you could be right, my docs thought it  was still Incivik related; its just  that it is so obviously a different phenomenon, a second wave or something. Mysterious...

[Advocate1955]

DresdenO, I don't think the riba rash generally has ulcers or blisters. I would say that could still be part of the Incivek reaction. I put tea tree oil on those when my hubby got them.

[sph0611]

Tada123, I'm so glad you mentioned the warts. They have been showing up on me as well. I showed them to my hep doctor and he said it had nothing to do with treatment. I find that hard to believe since I never had them before. On a side note, I washed my hair tonight and as I combed it out it was coming out in fistfuls. I wish I knew how much I was going to lose. I have to say this is one of the most stressful sx.

[tada123]

WARTS proliferated abundantly on my chest, back, shoulders and face. Specifically flat warts.  Derma said it was due to weak immune system.  My condition didn't look like yours, but I offer this info just FYi for the community.

[DresdenO]

Sunday update: not much to report. They started me on Prednisalone, first intravenous then oral  to suppress the Incivik reaction, on top of topicals and they're tapering it now after a week. The rash has fallen into line but interestingly an entirely new and different one has appeared which I assume is related to the Riba. Unlike the generalized incivek rash it is these discrete little ugly ulcers with ochre brown scabs, rather disgusting. Since they took me off the Pegasys and Riba last Tuesday, I think its just leaving a calling card on the way out of my body and hope it peaks in a day or two then starts to recede. I'm being well looked after here in the Krankenhaus - except for the medieaval internet arrangements which took some finagling - and they expect to release me in two or three more days. Salve head to toe twice a day and the oral steroids, plus a couple of antihistamines to manage the symptoms. The itching has all but disappeared. I was given a vaseline based cream for a few days which was really awful, it doesn't let the skin breath and I think it only aggravated the rash and itching, i'm insisting on cremes or milks at the moment. And I must say, i am feeling daily better in my head, and now look back at the period of a couple of weeks ago as something like a psychotic episode, I was in some sort of altered state, my head was so messed up by everything! So good to start  feeling my old self again. I see I still have a hell of a temper which i ascribe to the Riba - I just called a fellow at the pastry shop an '*******' for not giving me change for a five euro note, even though I'm a daily customer. Well...he was an *******, no? All the best to my friends here!

[rivll]

Good luck to you.
I wish you all the best.

[mzkity]

Good luck to you. Get a good nights sleep!!!

[DresdenO]

Tuesday update: after meeting with my liver doctor this morning I have conceded that to halt the treatment at this time is not as disastrous an outcome as I had thought. He and his colleagues are of the opinion that because of the excellent pcr results so far it is likely I have already cleared the virus and a further twelve weeks on interferon/riba will do more to increase the drug companies' bottom line than my chances of ultimate success. It is a gamble, but I feel that it is one I am willing to take. I will cross my fingers till the next pcr's 3 and 6 months hence, and in the meantime am so looking forward to the absence of sleepless nights, sweats, zero appetite, wild mood swings, foggy brain, shaking hands, trembling knees...and just not feeling like my normal, grumpy self. All the best to my wonderful friends here, who've been instrumental in guiding my judgements about the therapy and I will keep you updated as information comes in.

[Dee1956]

Hi very glad you are going to the hospital, as Willy said this can get very bad and it looks pretty bad right now.
Hang in there

[LookingForward12]

P.S. I could NOT go in the sun...or heat....very difficult because I live in the South! Just grateful I only had to endure four months of warm weather while treating. I would not advise sun either.

[LookingForward12]

I feel your pain and wish I had found your posts earlier. I have sent you a message.
I am pulling for you! With the right adjustment of your meds, I believe you can beat the rash and continue your treatment.

These medicines are so powerful that for some of us they work really well, but then begin to poison us and the result is The Rash.  I had DRESS and it took prednisone to stop the progression of the rash and the edema...but I managed to stay on treatment for the full 24 weeks. I'm now SVR.

[Advocate1955]

Glad to hear you're off to the hospital.  Hope to hear from you later today as to how you're doing and what the ER docs are doing to help you.
Advocate1955

[Willy50]

You were advised correctly by others.

Good call to get to the hospital.  This can get very bad, very quickly.

willy

[sph0611]

Hope you get some relief at the hospital. Keep us updated.

[DresdenO]

Sunday morning update: I had decided to wait till Monday because I had a visitor. But this suddenly seemed ridiculous. I've woken with tingly palms and feet and the rash has spread across those and my face. I'm packing a few things and heading to the hospital directly. Not sure about internet access, will keep the forum posted as possible. Thanks all of you, Advocate, Dee, many others for your support, it makes a real difference to my mental health!

[gardengirl965]

I had an awful rash while on Incivek. It covered my whole body but not on my face. The doctor stopped my Incivek treatment at 10 weeks due to the severity. I got no sleep due to the itching. Thought I would go mad! Ny doctor had all the nurses and PA's come in and see my rash because it was the first time they had seen one that bad. I was prescribed Hydroxazine for the itching and the Dermatologist told me to use a lotion called Cerave. I posted pictures of my rash on my MedHelp page. My hair come out too. The rash finally cleared up, but it took a long time for me. When the rash started clearing all my skin (even soles of feet&palms of hands)  peeled off like when your sunburned. But the end result was great!! It looked like I had been in to the spa for a chemical peel. I'm 2months out of treatment and my hair is just now trying to fill back in. Now 2 months out of treatment and I am still having side effects. Joint pain and stiffness and now a rash is coming up on my face and swelling and redness on my eyelids.
Take care of that rash. All my best info I got from people on this forum. Sharing of info is a great thing!

[mzkity]

I'm wondering the same thing. Please dresdonO get in there fast!! I know we all love are homes when were not feeling good. Just looks to serious! Good luck!

[Advocate1955]

I'm sorry you had to miss your trip, but I agree that it was the best decision.  When you have a systemic reaction like you have had, it can take a really bad turn really fast.  Not something you want to happen on a plane or out of the country.  Not only can this type of rash be life threatening, but it can also obviously jeapardize your ability to stay on treatment.  Good decision.
Now, onward.  Hopefully they will be able to control the rash in the hospital but still allow you to continue treatment.  Now that you're off Incivek, and you know that you're UND, it would be fantastic if you can stay on treatment with the rash more controlled.
As I said above, my hubby had the inicivek rash, but not quite to the degree that you do.  It settled down fairly quickly after he finished incivek, but he did have some weird neuropathy like symptoms (tingling, twitching, stinging, and the weird itch that Dee mentioned in her post above mine).  That all settled down during the first week after Incivek, but just about drove him crazy for a few days.  
During the weeks after finishing Incivek, the overall rash (not the severe Incivek rash, but the overall rash) gradually improved.
The key is to treat the Incivek rash right when it starts, and most people on our forum seem to respond pretty well to topical steroids and Hydroxyzine.  Some people have needed to be treated with other meds too, but catching it early seems to help avoid that.
Best wishes to you.  Keep us posted.
BTW, why are they waiting until Monday to admit you?
Advocate1955