As always thank for the info.
BTW, What can you tell me about having low corticotropin releasing factor. This is on my wife's blood test for the pass 3 years. I've been researching it but it doesn't say much about low CRF, more on high CRF.
Beagle
Hep guy sorry your still having bad sxs, hope things improve for you soon.
Algernon--Yessssssss! We only have a week left, are you still doing full meds? I know my HGB is only 8.0, but I feel fine at the moment. However my leg and feet are killing me. I think it's the procrit as it causes bone pain. How are you doing?
Beagle
Algernon--I'm the one with another week, I started Jan. 1st. You only have 1 week left of tx and I know you can't wait. Did you see what hep guy wrote about bone pain and riba?
Hep guy-- Didn't know that about the bone pain and riba. So in my case I'm getting it from the riba and the procrit.
Thanks
Beagle
you still here spreadin the good word, youre the best! how you doing? I hope well...I thought of you because of the news lately, did you hear of this big study out of the Netherlands? it concluded that not eating fruits and vegetables was about as bad for your health as smoking...I thought, Rocker will get a kick outta this! you take care Rocker Dude!!!
<u>DD</u> - it's somewhat ironic - and not very comforting - that my father was diagnosed with an auto-immune disease (Myasthenia Gravis) some years back. And here I am scrambling my immune system via interferon.
I've been told by various docs that my father's having MG doesn't put me at any greater risk of contracting it myself. But that equation doesn't include me having been "interferon-ed". So, as you say, there's no telling if some of what we are experiencing is AI-related. Or if we are now at any greater future risk of an AI disorder as a result of interferon.
It sure would be nice if there were available/affordable ways to measure immune-system function before, during and after tx. Oh, and you could through in the same for occult/persistent post-tx, too. Even if there is little-to-nothing that can be done to treat these matters today, adjustments can be made in one's life over time as that data would accumulate. And, that information could prove valuable if-and-when any form of tx would become available.
<u>ALGERNON & MBB</u> - thanks for your thoughts. You guys hang in there. You're nice and close to the finish-line. Things get better - ALOT better - off the meds.
Bone pain - I should have mentioned above that I don't associate my continuing post-tx bone pain to having taken Neupogen. On the contrary, from what little I have been able to dig up on it, my main concern comes from having been on the riba. There has been anecdotal evidence of bone loss (usually the larger bone areas. e.g. - hips, thighs, etc.) occurring in high-dose and/or long-term usage of riba. If things were to not continue to slowly improve or if they became worse, I'd push to get a bone density test.
TnHepGuy
I started on Dec. 26. Don't tell me I have ANOTHER WEEK or I'll probably do something crazy.
Actually, I've collected a special stone for each shot. And I have a pile of 23 of them. So I'm pretty sure that this Sunday is the 24th shot.
When did you start your meds, what date? I think we are a week apart as Sunday is my 23th shot. Some how we got this mixed up. LOL Not hard for me to do, have been doing that durning the whole treatment.
Beagle
I figure we only have two days left. Here's how it works. Today doesn't count. Two more days. Then the day with the last shot. Can't believe we're almost there!
Meanwhile, I have chest pain, joint pain, "neurological events", etc. I'm sure they mean nothing...
Not to undervalue your dedication to the studies of human elimination, but you certainly offer this group much more than just that. Still, amongst all the unpleasantries that get our frequent attention here, it sure is refreshing to have you reminding us that BMs are our friends. I'll always remember you for that. So thanks.
<b><i>Forseegood - She's more than just a pretty bowel mover!</i></b>
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.
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
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
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...
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>!
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
hey I'm going to the Sierras this summer too! Well, I'm going to give it a real effort, have a friend that lives at the foot of them and he lets me hang out there if I want to, or there are so many nice cabins and B&Bs there as well, as you well know I bet..if I look downstream and see some guy furtively drinking out of a stream like there's no tomorrow, I'll give you a shout! ha ha ha!
Just curious if you used Neup or Procrit while tx'ing. Sorry to hear you are still having some negative issues. Here's hoping they resolve sooner than later.
miss
Here is a link to an article which covers the issue of viral load in GT 1's, and its impact on SVR rate. Interestingly, they found NO significant difference in SVR for low or high viral loads! This is good news for those GT 1's with extremely high viral loads. No reason to be pessimistic at all!
http://www.hivandhepatitis.com/2006icr/ddw/docs/060206_a.html
DoubleDose
tn/cuteus: as ever, thanks for your interesting selection of recent articles. All the best to you and cuteus on your upcoming SVR confirmation; I'm certain you'll soon be joining DD in celebrating.
Jazzcat : thanks for the interesting background info. I hope MH doesn't kill this thread because of the full-text inclusion : it's safer to post a link and avoid the copyright issues.
forseegood: I had no idea; to my money you definitely don't post enough. Please keep us informed, I thought kittyface was the only other person on this board trying it out. I've been trying to read up a bit on alinia/nitazoxanide, without making much headway, since it seemed a promising way to do maintenance.
Here's the <a href="http://www.fda.gov/cder/foi/label/2005/021498s003lbl.pdf">FDA drug sheet</a> and a rather dense description of its antibacterial effect, <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16127045&query_hl=1&itool=pubmed_docsum">Esposito'05</a>.
I was thinking of going backpacking in the Sierras in a few weeks where there's a fair amount of Giardia. If I drink enough stream water maybe I can talk my Dr. into an rx..
Jazzcat's 2/25/06 summary seems to imply Romark was planning to release something at DDW, but they didn't. I wonder if this reflects incomplete results or major negotiations between privately-held Romark and the pharma big boys.
I'm with you on that one. My 'new' immune system is very different from the pre-tx version. I react to almost everything in a negative way these days, including stress, allergans, sun exposure, physical exertion, etc. I still get painful mouth and tongue sores that make my ear ache at times, I have joint flare-ups in the back, ribs, and neck that are often pretty intense, and my skin breaks out in little red bumps from sun exposure, while my face exhibits a 'mini-Lupus' rash, across the cheekbones and bridge of nose. Its odd to feel better, and feel worse at the same time.
Thanks for the congrats, and same to you as you approach two years.
DoubleDose
I've been pretty well left with bone/hip/upper-leg pain ever since tx. I've got other lasting sx's that started when on the meds, including: unexplained, near constant skin breakouts around the perimeter of my nose, chronic nasal drip, increased sensitivity to allergens (just started bi-weekly injections), chronic calf cramping, frequent chalazions (eyelid oil-gland blockages), generally slower healing times - and a few others that don't come to my spongiform brain at the moment.
I'm now of the opinion that one leaves interferon tx with an entirely different - and not in a good way - immune system than what one walked around with prior.
Yep. Still a Damn Yankee here in the South. We may briefly change that status this fall if my wife hits the NYC Marathon lottery (she finds out later on this month). Though, that still won't be in time to visit the stadium unless the Bombers are in the Series come November 5th.
One thing is certain, though. Next time we're up North, I plan on raiding as many Italian markets and bakeries as possible.
Hope all is well with you and family.
TnHepGuy
In Egypt Geno 4 is the most common Geno. Like our 1 is here. This is why they only treated Geno 4 in their trials.
Ron
Well I know both of the women who are taking it over at Janis, I'll report back with any news I find...actually, there seems to be a few more people willing to try it, a few non-responders, if so far they say there aren't many sides to it, what the hay...
Wouldn't you think an antidiahhreal might provide a whole new set of it's own problemms if you take it but don't need it? ;)