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Avatar universal

Hi folks. 12 weeks along this thursday.

Just catching you all up. Michael is off Incivek as of today - 4 days shy of the full 12 weeks. He left his prescription rash cream (Fluocinonide) home when we went away for the weekend on the 1st. His rash came back with a vengeance that Monday and we can't get it under control. Probably on 70% of his body. Not blistering thank God. But it was nearly gone and he was only using the cream once a day. All I can hope is that it's not Riba rash.
Headaches are much better since they reduced the Pegasys to 80%. Still there, but not generally migraine. He had one this morning but took some meds and it cleared up in 30 minutes.
Energy very low, of course. He gets winded so easily and needs a nap. Considering how strong and robust he's always been, it's hard for him to deal with. But still - he's not couch ridden so we consider him very lucky.
BTW, I read somewhere you need to keep up the fats for a week or two after stopping Incivek. It helps the "withdrawal" side effects. So he will. His appetite isn't the usual, but eating all those fats have kept his weight higher than he'd like. I know that will change when he finally drops them.
Be strong everyone.
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Avatar universal
Thanks Dee. Yeah, his rash is "severe". Trying a new ointment now. Fingers crossed. Hang in there yourself. We'll be thinking of you.
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317787 tn?1473358451
Hello, thank you so much for sharing your husband's journey.  The tx is very harsh for some,  It made me realize I was stronger than I ever knew
My doctor said I had a rough time because I was in to cirrhosis by the time I was diagnosed..  I was couch bound and am impressed by your husband being able to continue on.
I continued to eat a smaller amount of fat for the last few weeks.  I saw evidence of the Incivek for about 2 weeks.  You have a good idea.  It is very hard to be so weak, tired and sick.  Please tell your husband he is doing a really good job and that he will feel relief when he finishes the Incivek though it may take a day or two.
About the rash, if you go on Vertex's site they now have pictures of what is mild, moderate and severe.  They put that up after I had finished tx.
I think it was because doctors were not prepared for the side effects of Incivek, at least mine wasn't.  At least this way people could look it up to see how bad they were.  Some on here had to stop the Incivek early due to the rash and they are still UND over 6 months later.
Best wishes to your husband.  Hang in there.
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