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.
Good luck!!! And thanks for posting this picture. This will really help people. The photos they have on the website for incivek are NOT good at all. I am only on week 2 and have a rash on my hands and feet, but suspect it may be from the riba. again, thank you for posting so that others have an idea and good luck. please keep us posted!
You poor thing! I feel your pain. I had an Incivek rash similar to that all over. I ended up stopping the incivek at 11 weeks 2 days. I felt better within a week and the rash got better by a little but not much. As a matter of fact I developed a different type of rash from the RIBA. It's almost as if this RIBA rash was hiding under the incivek rash. My doctor had me stop the RIBA for 1 week to get it under control. That helped so much. I actually started to feel like my old self and the itch was so much better. I've been back on the RIBA for 1 week and the rash has come back with a vengeance. I look like I have a sunburn and I'm scratching constantly again. I have all approved and recommended meds from my derm but really nothing is getting it. I was UND at week 2 and will have my 17th shot on Friday. Not sure how much longer I can scratch. Good luck at the hospital today. Keep us posted.
Mine looked just like that, but I didn't want to take pics, because I didn't want to remember it later. You have finished the hard part. My rash, which looked just like yours, did not go away until I started to expose it to the sun. It was completely gone in about 2 weeks of doing this. I started with about 2-3 minutes on both sides and finished with about 20. I know that this flies in the face of conventional "wisdom", but it is what worked for me. I also have psoriasis and I know that it does not happen in areas exposed to the sun. It will get better, I would do everything I could to stay on treatment, if I were you, good luck...Mark
Wow that's a doosy! Just went to my derm for my follow up appt. Rash is on my arms. I'm only on peg/riba. I'm 2b and und at, now 10 weeks. I was given hydroxyzine tablets and halobetasol ointment 0.05. Its working well. Even though the nurse almost fell off her chair I think its getting better. But he did speak with gastro and they will not take me off treatment!!!! Hrsepwrguy is right maybe you could pm pooh I believe she had a pretty bad case. Good luck to you!! Kitty
I am sorry to see that you have that horrible rash. I have a lot of empathy for you.
I did get a bad rash, although yours is worse. As hrsepwrguy mentioned, coeric had a very bad rash. Also LookingForward12 had a very bad rash.
I used the following prescriptions twice a day, all topical steroids: Fluocinonide ointment for the body, Clobetesol Solution for the scalp, Hydrocortisone Valerate cream for the face and ears. I was also on Hydroxyzone 50 mg every 6 hours orally. The topical ointments and creams helped, but it was the oral Hydroxyzine that really got it under control. This type of rash needs to be jumped on immediately and aggressively because, as you can see, it will worsen rapidly. Hopefully your doctors will treat it aggressively so that you can remain on treatment.
I know that both coeric and LookingForward had to use either injectable steroids or oral steroids or both. Both completed treatment and LookingForward is now SVR. Coeric has not had his final 24 week PCR yet, but he was Undetectable at 12 weeks post end of treatment. I mention the oral and injected steroids because the steroids treated their rashes, got the rashes under control, and allowed them to stay on treatment and complete treatment.
I realize going in the sun helped one above poster, but I would recommend definitely avoiding the sun (not that you have any sun in Dresden right now anyway). But,seriously, the majority of us have noticed that the sun and/or heat will make the rash bloom like the desert after a rain. My profile photo is what I looked like after being in the sun for a couple of hours, and that was after I had already completed treatment. The sun is the enemy for most of us on treatment. I could give you more suggestions, but I think they are all in the threads I have listed below.
I am going to list links to 3 different threads, all from LookingForword. They all concern her rash and they contain a wealth of information and advice from others, plus they will detail her progression and what she and her doctors did to control the rash. I think they are excellent threads and should give you some information and insight into the rash and its treatment. Just go to the links and read the entire links, all posts.I think they will help.
This is her post about her steroid injection (in a totally different thread): "I suffered from a severe rash from the Incivek. I received a Kenalog shot but it was four days after I had completed my doings with the Incivek. It did very little good (may have been the amount I received wasn't enough) so I had to go on a tapering dose of prednisone the week after that for fifteen days in order to stop the progression of the rash, which continued even after stopping the Incivek. "
Link to LookingForward12's profile page and some photos:
i was taken off the incevik at week 10 due to rash. the docs waited a week to start the prednisone which i was on for 5 weeks. the interferon and riba were also decreased. i asked the senior attending hepatologist if he ever kept folks on prednisone for the entire treatment. his answer was "we sure don't like to." the protocol with the bad rash is to stop the incevik, but try to continue interferon if the patient is willing. wait a week and then start prednisone.
the docs kept an eye on the eosinophils which went from 0.1 at the start of treatment to 0.5 at week 10. skin biopsy may also be ordered. i would not continue treatment if the biopsy shows vasculitis.
I'm sorry you're struggling with the Incivek rash. It can be a very challenging side effect. My husband had the Incivek rash from about week 2 all the way through and shortly after week 12. It didn't look quite as bad as yours, but pretty close. He used Hydroxyzine, Triamcinolone ointment, and we put tea tree oil on the the blisters. I think you will see steady improvement in the rash now that you're treating it and also now that you're finished with Incivek.
As all are: I'm sorry to "see" your dermatologic distress! I had less of a rash and was taken off Incivek at around 10 weeks....I definitely continued with the interferon/riba (the latter was reduced secondary to anemia which has no relevence to your post)....Since the rash was unambiguously caused by the Incivek it went away over a week or two post Incivek. I have never given direct advice on this forum but this one time I really recommend you get a second opinion before suspending the Interferon/Ribo if the hospital default is to "stop everything"....It just seems so futile and sad to discontinue the necessary secondary medications to achieve SVR when all you might have to do is discontinue the primary causal medication! You've earned an optimal chance at SVR. d
i had that except worse was my lower back and legs....man was it bad....2 weeks after the incivek it got a little better but still was bad....sometimes worse then others.....good luck with the rest of tx....billy
Thank you for all the helpful input on this thread, and the links, which have also been useful, I won't thank each of you but I am so grateful for your trouble. Just to update, after visits with a dermatologist and a liver specialist this morning - Thursday - the decision is to monitor the success of the topical ointments to Monday at which point if progress is not significant, treatment is to be stopped so I can be treated with steroids intravenously. The dermatologist wanted to admit me and I had to sign a release form before they'd let me go. I'm supposed to fly to Paris for the weekend tomorrow, not sure what to do now.
Just wanted to let you know that the topicals will usually eventually work, but it takes a long time. I was first prescribed only the fluocinonide ointment. I used it everywhere that I had the rash. At that time, my arms were very bad, like your back, maybe even worse because the hives were piled on top of each other, a solid mass of red bumpy skin. It took at least a week and half before you could see any difference and it took a total of 3-4 weeks to clear it up. In the meantime, it just moved next door, where ever I was not putting the ointment, the rash appeared. If you are not on a strong oral antihistamine like Hydroxyzine, it would be advisable to ask your doctor for one. The 50 mg Hydroxyzine every 6 hours in conjunction with the topical steroids is what finally got my rash under control.
The rash is a systemic reaction to the drugs and that is why the topical ointments and creams alone won't always work or won't work very fast.
Your rash looks really bad to me. I was going to send you a link that Vertex used to have showing mild, moderate and severe rashes, they must have taken it down as my link is now showing that to be for physicians, no pictures. Here is it just in case however I did not see the pictures
You may want to go back to the dermatologist and have him admit you.
Better to be safe than sorry
I feel for you and your rash is one of the worst I've seen in photos. You must have an iron will and determination to have made it this far.
My rash was not as bad as yours (pics on my profile) but it was of concern to my NP and Dr. The NP said she was watching for signs of my face swelling up and the rash spreading to more than 50% of my body. I was on Fluocinonide and Atarax and they both helped.
When I finished Incivek I got an intense itch for about three days before things calmed down and the rash began to get better. In two weeks most of the rash was gone but I still had some itching.
Congratulations on finishing the Incivek and I hope your rash subsides and that you'll be able to continue treatment.
Just to update, I"ve decided the rash is NOT improving notably and have cancelled the long anticipated Paris weekend, ouch. Day 4 post-Incivik. I'll present myself at the hospital for admission Monday to improve my chances of controlling the rash. The nurse from the clinic called to let me know my 12 week pcr was UND, not-ouch!
The rash is slowly intensifying along my limbs and creeping onto my forehead from my scalp and now the soles of my feet are slightly swollen and squishy, I guess an intensification of symptoms of sorts as well.
Thanks for all the sympathy, kind words, support...it brings me to tears, it is such a great support at this time.
I am so happy you decided not to go on your trip. I know when I was in tx I could not have taken going on a trip. I had this convulsive itching that I could not control, it could go on for hours, can't imagine being on a plane
I am really glad that you are going into hospital. I have never seen a rash as bad as yours. While Lookingforwards was bad yours is much more red and I can see weeping of the blisters.
I am so sorry for what you are going through, it will be worth it in the end.
I wish you all the best
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?
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!
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!
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.
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.
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!
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.
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.
"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.
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.
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
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