baffeled

[kelly39143]

Hi everyone I am completley baffeled about my health I have no idea as to what is what ??? I know it sounds crazy but I had so many things going on at once I couldnt keep up. I was dig around 2001 by accident, right after that I was dig with fibromyalgia and that really hit me hard and I was completley bedridden dor 1 yr the pain was horrible. I finally deceided to take pain meds for releif, I also blew a disk out in my back 2 yrs before that so I had pain meds but hardley ever took them because I still was working, I sought out physical therapy so I wouldnt have to take the pain pills. When I became bed ridden I deceided to take pain meds so that I could function. Because of many family things I kept on post poning treatment my dad died then my newphew died, then my brother had a heart attack  and needed open heart surgery my kid graduated college so I had so much stuff going on I needed to try and keep up with my family. Finally in 2007 I started , up until then I was seeing a gasto dr but felt very uncomfortable with him. I found lifelink in tampa fl the only hepatologist in tampa and started going thru all the different test to start my tx. I did it the first time for 6 months until I broke out in little red dots everywhere and discontinued. I took a couple months off got healthy again and tried again once more after 5 months red dots and had to stop I got my viral load down to 150 I feel like I was so close. So my question to all of you is what choice do I have left ? I am geno type 1a and grade 4 I did the first one with  a shot a week and the pills 1200mg and then the second time around it was a shot a day and the pill not sure what all the stuff names are but I'm sure u guys do. so please any help with what I can expect ? thanks

[Bill1954]

Hi Stacey,

That’s a good question; maybe Kelley can provide some answers for us. I just took it her doctor must have called the shots, and took it from there; you’re right, I didn’t consider asking her.

There aren’t any support drugs for platelets that are used for HCV; although there are some for ITP. I’m not sure what might have caused the ‘little red dots’; although I believe sometimes things like petechiae can be due to hepatic decompensation; maybe her doc pulled her because of something like this? And I hear that occasionally ‘riba rash’ can be severe enough to warrant Tx discontinuation too.

Again, hopefully Kelley will stop back and inform us,

Bill

[IMstacie]

I don't understand why kelly stopped?  If the red dots were a result of low platelets couldn't a helper drug be given.  150 VL is low, why wouldn't she just stay on tx with helper drugs and extend?

[Bill1954]

Hi Kelly; welcome to the discussion group--

It sounds as though the last few years have been quite challenging for you, to say the least. My understanding is that you have treated twice; once with pegylated (once weekly) interferon, and a second time with daily Infergen. Neither of these allowed you to achieve a viral response to date?

At present, your options are limited, I’m afraid. As a stage 4 cirrhotic, your angst is understandable. There is a new class of drugs now in late-stage clinical trial; they are collectively known as protease inhibitors, and could be on the market in as little as two years. They will be added as an adjunctive to the current interferon/ribavirin combo; and appear to increase the efficacy of treatment for genotype 1 patients considerably, along with the potential for shortening treatment duration.

The name of the two meds closest to release are ‘Teleprevir’ (Vertex Pharmaceuticals) and ‘Boceprevir’(Schering-Plough); you’ll want to watch these drugs carefully, and discuss them with your doctor, to get his take on them. We have a member here that had a situation similar to yours; he had treated 7 times, all non-responsive. He finally got accepted into a phase two trial, and with the help of Teleprevir, beat the virus.

Take care, and stay in touch with the discussion group here; let us know how things go for you—

Bill

[IMstacie]

hopefully someone else will chime in.  But, I have a question, why did you stop after getting "red dots" ??