I saw your comment about giving this intestinal drug a shot. You know one of these days you are going to be standing in your kitchen and a mushroom cloud will go up where you used to stand don't you:). I'm amazed at how sharp all of your minds are. Each of you are so analytical and my brain is mush to put it politely. Dale
Forget six degrees of separation, you seem to be one (or fewer) degree separated from anyone with bowel probs or the treatment there of! You could be the new Charmin spokesmodel! (Now <a href="http://ec3.images-amazon.com/images/P/B0006M511A.01-A3CDPEGSIQM61V._SS500_SCLZZZZZZZ_.jpg">with camomile and aloe</a>!
well, I have walked around with toilet paper stuck to my shoe often enough, but I don't know that they would recruit me to be there spokesmodel...hey what else can I contribute to this board? I'm not treating yet and I do know *something* about bowel, bowl probs...glad youre fat and sassy today, hope youre doing well kiddo...
Thank you for your thoughts and concerns.
I used Neupogen for better than half of my 48-week tx. When I tx'ed w/ mono interferon in 1992-93 I was first dose-reduced, then eventually pulled from tx as a result of low neutrophils. So, when the opportunity for tx'ing w/ peg interferon occurred, I wanted to be sure that my doc would Rx Neupogen. That being said, I started experiencing bone/hip/upper-leg pain associated with on it. And it continues to one extent or another to this day.
I didn't take Procrit. My Hg "settled out" at about 11 during most of my tx. And, with that and my other counts stable, I wasn't tested for the last 6 weeks of tx. Bad move on my part. My Hg tanked to 9.6 and man, oh man did I know it. And since finishing tx (Jan 2005), my red counts and white counts have been low - only recently coming back into the low-range of normal, but still sub-baseline.
I certainly don't mean to make things sound worse than they are. All my sx's are very much livable. And some of them have been fading over time, too.
My latest concern (to keep company with occult, that is) is what having had my immune system "modulated" (read: overwhelmed) by interferon means long-term. And wondering if there is any way to try and amiliorate the damage that has been done to it. So far, I have located little-to-nothing to go on.
Hope all is well with you.
TnHepGuy
And you probably won't find much to go on. I do not think there is very much 'acknowledgement' out there of the immune system after-effects caused by Interferon, much less any attempts at treatment. I am still hoping that these issues will slowly mitigate over time (hopefully before the end of a life-time!!!)
My 'auto-immune' type post-tx effects seem to want to keep going, and in some ways are a little more pronounced than the year after ending tx, while in other ways are slightly better.
The sun related reactions are definitely getting worse...last summer I still tanned well, but had a few 'lupus-like reactions to lots of sun exposure. This year, I can hardly tolerate the sun without experiencing burns, rashes, fatigue, immune reactions, and interestingly...joint pains.
Maybe we will ultimately have to treat ourselves as if we had a form of lupus, or other autoimmune disease. I really do not want to have to go there, though. Let's all keep an open ear to others' experiences, and to new research.
DoubleDoes
I really appreciate your regular posting of links to new research. They are extremely helpful.
I am sorry to hear that you still experience so many sides. I have one week to go and joints hurt a lot. I'm almost more worried about the long term sides than the SVR.