If you don't treat the rash by quitting tx, what will happen

[MsDragonSlayer]

Has anyone been hospitalized on here or had severe complications from a rash from this triple therapy/ Incivek?  
I can't find any info out on this in the guidelines. Just wondered what the worst case sinareo would be or the best case?
Thanks again and again!

[Deansbaby1971]

My husband is taking treatments and his rash is horrible. Three doctors looked at him last week, and said his rash does not look like a typical Incevik rash. I have looked at pics of the rash, and his begins like that but quickly becomes worse with infection-like pustules. His doctor has seen his rash from the start and not done anything about it. These other three work in the same office, and saw him when he went in for blood work. His rash worries me because it itches constantly, causes him to have sleepless nights, and hurts. The nurse is making him an appointment with a dermatologist, and I hope a solution is found.

[Dee1956]

I know that there is something called Steven Johnson Syndrome which I believe 1% of people can get from the incivek and they do have to hospitalized.  In the dose instruction it states that doctors should be on the look out for this.  I would look up the symptoms.  I think it has to do with mucus membranes drying up and/or burning from the inside out
I found a small amt of information on burning mouth syndrome
I hope that you have found something by now or at least gone to Hospital so that they could make you comfortable.  HepCExperiment is having similar symptoms, it sounds just awful
Dee

[MsDragonSlayer]

I know that people have been hospitalized, I just wondered what the protocol for them was once they were admitted? I was hoping someone on the forum had been through this and could share their experience with me and what was the SOC there? I am always trying to be prepared, I like having plan a, b & c...it comforts me. I know no one on here is ready for any unnecessary hospital bills.
I thank you again for the wonderful advice.

Carolyn

[Willy50]

The answer is yes, there are people who have been hospitalized.  I know of one, whom I personally know.  It was very serious, required hospitalization and took some time to recover from and to some extent they are still recovering.

Mremeet (Prove 1trial,  2006) also had to go to the ER w/ his rash and he reported people saw him and hit the deck; either running to help him or running from him like he had *ebola-leprosy*.  

Vertex says that less that 1% experienced stevens johnson grade rash and if possibly 2500+ people were treated w/ telaprevir I think you might be able to infer that possibly 10-20 people *during trials* may have had this even to this extreme, AND while being looked after at the trial clinics w/ free medical care and from doctors experienced with the drugs.

Vertex touches on steroidal use, just saying it is unproven.  I believe is a double edged sword, since while it may improve the response to the rash,  it does this through diminishing immune response.

willy

[MsDragonSlayer]

That's great that's all your rash has spread. I will be sending healing thoughts out to you! You are all blessing!
Carolyn

[chuckles333]

I had quite a lot of rash on my shins at about week 10 of TX with Riba & interferon. I was prescribed a steroidal ointment an this helped only slightly in controlling it. Good news was it got a little better rather than a lot worse. My TX was 26 weeks and I made it through without having to adjust any dosages. Good luck.