Welcome to the forum! its a great resource, but for new questions it is much better to post as a new question rather than adding on at the end of an old thread, especially one that is this long. Best wishes!
Did the cirrhosis improve? Do you have any problems with cirrhosis after clearing the Hep C Virus? Is the treatment harder if you have Cirrhosis? Many thanks.
I had a horrible rash on the bottom of my legs. The itching and burning was unbearable! I have been prescribed every pill, cream & ointment to no avail. I was at the store and saw a bottle of Bactine. I was desperate so I thought I would try it. It was AMAZING! By squirting the Bactine all over my legs I noticed that the itch and burn subsided. It has numbing effect on the skin which was perfect! I no longer was scratching it so the rash did not spread further and in about 1 1/2 weeks, it was completely gone. Im not sure everyone will have this result but it was the only thing I could fine that gave me some peace so I could sleep.
ask about a kenalog 40 shot, I was covered in a horrible itchy rash and this was the only thing that helped. within 2 hours of getting it my itching stopped and the rash was all but gone. i got one every 5 weeks till i ended treatment.
I'm so sorry. Truly. Please keep us updated after your appointment. So sorry....
Cold packs and massage sound helpful, good for you, to stay so positive and organized about solutions. Haviing the Dermatologist have a conference with the Hep Doctor sounds great, and hopefully relief will come soon <3
The rash is actually a little worse on my legs back and arms....although appears to be clearing on my chest - that is where it first started at week 4. My scalp feels rather numb and I'm not sure what that is from. Last night the bottoms of my feet were burning as I tried to go to sleep and it was one of the worse nights for not being able to sleep.
Thanks to your idea, Michael, for the cold packs. I apply them throughout the day and they seem to help a lot.
To the dermatologist again tomorrow and I am going to try to get him on board with my hep doctor to get this thing cleared up.
I just had a friend come by and give me a massage so I am also hoping that will release some more toxins and get them moving out of my body. She has magic hands :). And with her, I didn't mind her seeing the rash.
It still covers about 75% of my body.
I had the same rash over 80% of my body,even my head.Check to make sure you don't have anemia.Call your dr about the rash.
I hope there has been some improvement, hopefully?
Oh, I should clarify, the Triamcinolone that my husband was prescribed was the ointment, not a pill.
Advocate1955
It is my understanding that you should not take internal steroids while on treatment but that topical steroids are okay. Both my doctor and the specialty pharmacy okayed the topical steroids.
I checked these drugs on the interactions checker at drugs.com:
•hydrocortisone topical
•prednisone
•ribavirin
•triamcinolone topical
•Fluocinonide-E (fluocinonide topical)
•Incivek (telaprevir)
•Pegasys (peginterferon alfa-2a)
The following is the result I got back for interactions:
Drug Interactions:
"prednisone ↔ telaprevir"
Applies to: prednisone, Incivek (telaprevir)
"GENERALLY AVOID: Coadministration with telaprevir may increase the plasma concentrations of systemic corticosteroids. The mechanism involves telaprevir inhibition of CYP450 3A4, the isoenzyme primarily responsible for the metabolic clearance of most steroids. No pharmacokinetic data are currently available, although telaprevir is a potent CYP450 3A4 inhibitor and may interact significantly.
MANAGEMENT: The use of systemic corticosteroids in combination with telaprevir is not recommended. Systemic corticosteroids should not be used to treat telaprevir-induced rash.
No other interactions were found between your selected drugs.
Note: this does not necessarily mean no interactions exist. ALWAYS consult with your doctor or pharmacist."
http://www.drugs.com/interactions-check.php?drug_list=2378-0,1936-0,2009-0,2233-0,1107-13604,3328-15346,1806-1159
my rash was always there but sometimes would be really red and sometimes almost no red...but pretty much the same as your pics...except even when i was asleep i picked and scratch...i couldn't have made it through tx without itching and those blisters would open up...early on my girlfriend and i looked up the rash on the net under incivek...we looked at severe and i was way beyond that...not having it on my face or hands it was easy to hide..one time my gf made me show a little bit to my np...she was talking about taking me off tx so that was it..i just acted real shy and said it was fine...in two weeks i would guess your rash will be somewhat better and much more tolerable ...hang in there..the good thing is the incivek works so good you'll be happy soon....billy
No, I don't recall any warning about the Triamcinolone. He used it sparingly. Let us know what your Dermatologist says. have you actually seen your Dermatologist? The Dermatologist that the hepatologist refers to (at the University of Washington Medical Services & Transplant center) is the one who recommends the Eucerin body wash, Eucerin cream, Atarax and Triamcinolone for the Incivek rash. We added the tea tree oil for the blisters. I hope you get some relief, but I am concerned about the severity of your rash, how widespread it is, and how miserable you feel. I would say the severity matches my husband's rash, but yours is much more widespread (all at one time) than my husband's.
Best wishes,
Advocate1955
Oh my, just gave you the best answer thing. Not that it wasn't informative. I try to avoid that because ALL of the answers to my questions are stellar, in my opinion. Ah well...
That's the weird thing about my rash. It popped up from place to place but once it was there, it's just stayed....and worsened in severity. I had a rash on my chest since week three. It is still there and no better or worse. All of this other raised skin, pimply, red measly, blistery looking stuff has just come and stayed in the past three weeks.
There wasn't a caution about taking the triamcinolone? I keep seeing warnings about taking steroids while on the interferon. And msemeet, a poster on here who suffered from a bad rash, also took steroids and had somei issues. I guess this is something my dermatologist will have to take up with my treating doctor.
I have a friend, also on the triple tx, with Teleprivir, and she has a very itchy, and blistery rash, which she showed me, on her arm, but I didn't ask her how much of her body it covered, but I am sure, nowhere as much as yours!
Hey rash prevents her from sleeping, so she has to take sleeping pills, which she hates, as she's been clean/sober for 30 yrs (she is in her 60's)
Our doctor lowered her Riba, which didn't help her rash (or her anemia, she has to have transfusions, and takes Procrit shots)) She has been finished with her Incivek for awhile now (I think she is half-way thru, and has to do the full 48 weeks, with the Inf/Riba..and still has this rash. Then, she thought she was allergic to the Procrit, and that was causing the rash, so she discontinued that, but still had the rash, so went back on the Procrit.
The fact that the rash covers so much skin is what seems like a huge warning sign, to me. I hope you get a second opinion on what can to be done now, it just looks live such a severe allergic reaction- I'm praying for you~
This is a portion of an article on management of Telaprevir (Incivek) rash from Clinical Care Options. It’s over a year old, I didn’t notice a date stamp on it, but seem to recall reviewing it previously. You should really go to the link below and read it yourself; there are tables and other data that don’t cut and paste well. I thought you’d find it interesting; I believe this was published prior to market release of the drug. The site requires registration, but it's quick and free:
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http://www.clinicaloptions.com/Hepatitis/Treatment%20Updates/HCV%20New%20Agents/Module/Practical_Guide/Pages/Page%206.aspx
“The rash associated with telaprevir therapy is a primarily eczematous rash that resolves with discontinuation of therapy (Table 11). Typically, rash is seen within the first 4 weeks of therapy but can occur at any time during treatment. There are rare reports (< 1% of individuals treated with telaprevir-based therapy) of serious cutaneous adverse reactions, including drug rash with eosinophilia and systemic symptoms (DRESS) and Stevens-Johnson syndrome. However, because these complications may be life-threatening, they must be recognized early and all therapy must be stopped immediately.
To promptly identify rash, clinicians should encourage patients to report the following symptoms as they occur: rash, blisters or skin lesions, mouth sores or ulcers, red or inflamed eyes (“pink eye”), facial swelling, or fever. The help of a trained dermatologist is strongly recommended as deemed necessary by the clinician, particularly in more severe cases or those with mucous-membrane involvement. Although efficacy has not been fully established, rash can be managed with topical steroids or oral antihistamines when the rash is mild to moderate. Systemic corticosteroids should be avoided.
If discontinuation of telaprevir is necessary for progressive or severe rash, it is recommended that only telaprevir be discontinued first. If no rash improvement is observed within 7 days of stopping telaprevir (or earlier for worsening rash), clinicians should consider interrupting RBV or possibly pegIFN as deemed necessary. Patients should be monitored until the rash has resolved. Telaprevir must not be reduced or restarted if discontinued due to rash. For grade 3 rash, telaprevir must be stopped immediately. If there is no improvement in rash within 7 days of stopping telaprevir (or earlier if rash worsens), interrupt RBV. All treatments should be stopped if drug rash with eosinophilia and systemic symptoms, erythema multiforme, or acute generalized exanthematous pustulosis is suspected. For severe rash, all treatment should be permanently discontinued.
Patients should be educated before initiation of therapy regarding the signs and symptoms so rash can be quickly identified and managed.
The panel recommends that practices utilize a “go-to” dermatologist for identification and management of telaprevir-associated rash. Internet-based diagnosis should be encouraged for treating physicians who do not have access to local dermatologists.
For the management of mild to moderate rash in telaprevir-treated patients, therapies such as topical antipruritic agents, topical antihistamines, and topical corticosteroids can be considered. Patients with severe rash (≥ grade 3) should stop taking telaprevir.
Suggestions for anorectal symptom management include administration of any of the following: fiber, loperamide, hydrocortisone, or pramoxine topical cream.”
(more in the full article...)
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Good luck with all this; I hope it resolves quickly-
--Bill
OMIGOD, that looks awful! Far, far worse than I can even imagine putting up with. You are not bring a baby, you have been so super-tough that I'd be more concerned about a tendency to minimize your own suffering. Your rash looks dangerous! I can't believe your doctor hasn't done anything about it - my own doctor warned me in advance of tx that I should not hesitate to come in if the rash became anything more than a very minor problem, and that because of the risk of Stevens-Johnson Syndrome i would have to be followed by a dermatologist if the rash spread to more than about 25% of my body.
Please give yourself more credit for your toughness and get yourself in to a good dermatologist ASAP. Try not to worry about missing 5 days of Incivek. The SVR rate is still pretty damn good for people who stop after 8 weeks, so 11 weeks and 2 days is not likely to lower your odds in any significant way. I'm really worried a lot more about your rash at this point. Let us know how you are doing.
I had the same problem, it was torture especially at night. I tried various ointments and antihistamines, but nothing worked until I used hydroxyzine and betamethasone ointment.
With that combination, even within one day the itching was greatly reduced and it was virtually gone within two days. I still have the scars from my scratching at night when half-asleep.
More pictures in this powerpoint presentation. http://depts.washington.edu/psworks/slides/uploads/25/telaprevir_emincivekem.ppt
"Arghhhhhhh...........I hate to feel like such a baby."
No your no baby, i really don't know how you have taken this. My goodness your doctor should be shot..........
The Incivek site has a section on their site about skin reactions, with pictures. I'm sure you've already seen it, but if not, here is the link:
http://www.incivek.com/hcp/assess-and-manage-rash
I have eleven shots and twelve weeks of riba left.
OH - I already vented to the nurse at vertex on Friday. No help. I wish I could find an email address for them. I am going to call corporate offices Monday. Surely they have some group assigned to rash ( omg I can't think of the word) research....whew, that was tough! Especially since it was one of their bugaboos in the research phase.
Arghhhhhhh...........I hate to feel like such a baby. I think that is why I needed confirmation from the pics that what I have is a bit more that the 'usual' rash.
So. Here is my question.mhas anyone else's rash been this bad?
Advocate1955