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Continuing Questions for Hepatitis Researcher
I thought a new thread would soon be needed, so I opened one to continue the questions from many of us, below, for HR.
One question relates to the issue of Post-Tx 'hyper-immune' syndrome, and potential treatment for this problem. Several of us seem to have ongoing problems, well after completing tx, and obtaining the SVR. Issues relate to 'autoimmune type manifestations, joint pains, fatigue issues, rashes, sun-sensitivity, erectile dysfunction,libido issues, lack of energy and motivation, dry eye and sjogren's like symptoms, neuropathy for some, insomnia, etc. Any potential medications, therapies, or ways to approach these problems will be explored with great interest.
Other questions involved 're-treatment' for relapsers, and issues around optimal dosing, and the role of Ribavirin. Relapse between 3 and 6 months post-tx has surfaced on the forum, and would warrant some discussion.
Another issue is that of very late relapse after SVR, as in the several cases of patients on immuno-suppressive therapy that became HCV positive again after a good number of years clear on PCR. Any consensus in the HCV research community as to the validity of these relapses. Do they prove or even reinforce the theories of 'viral persistence after SVR', and HCV being in Remission, or is there still debate on the actual relapses being real relapses???
Other recent questions involver the potential for provoking relapse by having various surgeries (teeth, gum, etc.) soon after finishing tx (in the first year). Is there ANY logic to this?
Thanks for all replies!
DoubleDose
One question relates to the issue of Post-Tx 'hyper-immune' syndrome, and potential treatment for this problem. Several of us seem to have ongoing problems, well after completing tx, and obtaining the SVR. Issues relate to 'autoimmune type manifestations, joint pains, fatigue issues, rashes, sun-sensitivity, erectile dysfunction,libido issues, lack of energy and motivation, dry eye and sjogren's like symptoms, neuropathy for some, insomnia, etc. Any potential medications, therapies, or ways to approach these problems will be explored with great interest.
Other questions involved 're-treatment' for relapsers, and issues around optimal dosing, and the role of Ribavirin. Relapse between 3 and 6 months post-tx has surfaced on the forum, and would warrant some discussion.
Another issue is that of very late relapse after SVR, as in the several cases of patients on immuno-suppressive therapy that became HCV positive again after a good number of years clear on PCR. Any consensus in the HCV research community as to the validity of these relapses. Do they prove or even reinforce the theories of 'viral persistence after SVR', and HCV being in Remission, or is there still debate on the actual relapses being real relapses???
Other recent questions involver the potential for provoking relapse by having various surgeries (teeth, gum, etc.) soon after finishing tx (in the first year). Is there ANY logic to this?
Thanks for all replies!
DoubleDose
Just my 2 cents, but I dont usually have the energy, attention span, or the time to read every thread and these generic headings tend to get skipped. I usually go for those threads with titles that interest me.
Like I say, just my 2 cents.
Kim
Like I say, just my 2 cents.
Kim
Return...I second your sentiment on this being a very good, educational and supportive forum -- when it doesn't go off on meaningless, non-productive negativity...great post...
Mremeet: just wanted to say that I too have been anxious and hopeful about your progress, as many here I'd suspect (you being on the Vertex trials, etc)...I'm really, really glad that you seem to be progressing apace...ON TO THE SVR BUS FOR YOU!!!! Please keep us posted on your progress, inquiring minds and all of that!
Mremeet: just wanted to say that I too have been anxious and hopeful about your progress, as many here I'd suspect (you being on the Vertex trials, etc)...I'm really, really glad that you seem to be progressing apace...ON TO THE SVR BUS FOR YOU!!!! Please keep us posted on your progress, inquiring minds and all of that!
MEDICAL PROFESSIONAL
A quick comment on your rashes, frequency etc.:
In insider meetings re the development of the Vertex or other HCV Proteinase inhibitors one of the biggest obstacles was that the shallow groove of the HCV Proteinase requires a blocking molecule much larger than for the HIV Protease inhibitors. Because of the large size, inherent immunogenicity is strong and such stimulation of the B cell system leads to Allergies, rashes, immunecomplex problems. It would be interesting to see if a Raji cell or C1q immuncomplex assay ( both are routinely available, no reseach setting) result parallels the intensity of the clinical symptoms and if the use of the protase inhbitor intensified the level of immuncomplexes.
BTW one has to admire the quality of thinking and stamina that your above contributions require considering your current ordeal.
In insider meetings re the development of the Vertex or other HCV Proteinase inhibitors one of the biggest obstacles was that the shallow groove of the HCV Proteinase requires a blocking molecule much larger than for the HIV Protease inhibitors. Because of the large size, inherent immunogenicity is strong and such stimulation of the B cell system leads to Allergies, rashes, immunecomplex problems. It would be interesting to see if a Raji cell or C1q immuncomplex assay ( both are routinely available, no reseach setting) result parallels the intensity of the clinical symptoms and if the use of the protase inhbitor intensified the level of immuncomplexes.
BTW one has to admire the quality of thinking and stamina that your above contributions require considering your current ordeal.
Sounds like a rough ride. Still, your nine week goal seems doable and I think you should have a reasonable expectation of SVR regardless of what you stated. Don't remember your liver stage status, but don't blame you one bit for waiting for another tx approach assuming a relapse and that you don't have advanced liver damage. From personal experience, skin problems can be the absolute worse and mine didn't start normalizing till six months post treatment. Hopefully, your case is not the norm with VX-950 or things may not be as rosy as hoped for. Time will tell.
Be well and hang in there. Don't know if I mentioned "Banetar Bath Oil" before but it did help my itch and scaly conditions somewhat. It's OTC although it may have to be ordered.
http://tinyurl.com/ycl8dh If you do go ahead and order it, you don't rinse it off, just leave it on overnight after the soak.
All the best,
-- Jim
Be well and hang in there. Don't know if I mentioned "Banetar Bath Oil" before but it did help my itch and scaly conditions somewhat. It's OTC although it may have to be ordered.
http://tinyurl.com/ycl8dh If you do go ahead and order it, you don't rinse it off, just leave it on overnight after the soak.
All the best,
-- Jim
Hey jim, hope you're doing well, thanks for asking how I'm getting on. To give you a quick update, I'm still blinded currently in week 15 (I think). So far no indications of what my VL is, but according to my study nurse she says "no news is good news." By that she meant that if viral re-emergence was observed after clearing earlier in treatment, I would have been unblinded and discontinued from the trial (because it's not working). Since my lengthy dosing of prednisone and the solumedrol shot, I was worried I might have become detectable during that time (having also stopped the VX early and briefly interrupting riba dosing too). But I received blood tests during the worst parts of it (including blinded PCR's) and haven't been discontinued. This implies I made it through maintaining UND status, which would really be quite remarkable so early in treatment - especially considering the extensive use of steroids and various study/SOC drug dose interruptions. It would suggest the VX is indeed potent stuff...but I'm certainly not counting my chickens just yet.
As far as the rash is concerned, I've been off prednisone for about two weeks now. I still have a rash, but it is much more subdued compared to what it was. I guess what I have now is a classic riba rash. A lighter red rash, with dry insanely itchy skin with blotchy "hotspots" on my hands, feet and ankles. I suppose those are the resonating after-effects from the big bad systemic VX rash I was fighting earlier. I use clobex steroid cream to deal with those, seems to work ok. Just lately I've had to cut back on my riba, the rash and hot pin pricking "prickly heat" has been too much lately. I simply cannot take this feeling. The incredible itching, the crusty ears and maddening itchy ear canals. I've itched my eyebrows clean off my face. My scalp is dry and flaky and intensely itchy and burning, and now my hair seems to be falling out. All I do is lay in bed, take atarax and sleeping pills and try to remain as still as possible. Then muster enough energy and willpower to put clothes on over my skin and go to work. Unless something changes and the QOL improves at least a little, there is absolutely no way I can go 48 weeks. Right now I just dream and fight every day to make it to 24 weeks. That's my goal, 9 more weeks. I hope I can make it, but I'm dreadfully pessimistic nearly every day that I have it in me.
If I fail to get my SVR (which is looking quite likely at this point), I plan on trying again in a few years with peg and another PI (now that I'm allergic to VX) sans riba. I think I could handle this treatment without the riba. The riba is the real side effect killer, from my experience. If we can just get rid of it while hopefully enhancing current effectiveness, then we'd be getting somewhere.
Lastly, I was getting my blood drawn from our study lab tech and she said "there are four of you all with that bad rash". She explained that there were four people in our group that had a bad rash like mine. I thought that was interesting because when I asked my study nurse that same question, she said that there was no one else who had a bad rash in our group. I guess Vertex tells them to keep their mouths shut on matters of that nature. Plus I heard of another person in pln's (pam's) group that was discontinued from a "horrible rash like nothing we've ever seen". Also I noticed on my consent form that it says under "possible risks and discomforts" section: (when referring to 14 day VX mono-therapy trial results) "In the second study (8 subjects), the most common side effects considered possibly related were skin problems such as dry skin, itching, redness/rash (38%), and headache(25%)." I'm starting to suspect that rash problems from the use of VX may constitute a fair percentage of those who take it, although hopefully/thankfully still in the minority.
Take care.
As far as the rash is concerned, I've been off prednisone for about two weeks now. I still have a rash, but it is much more subdued compared to what it was. I guess what I have now is a classic riba rash. A lighter red rash, with dry insanely itchy skin with blotchy "hotspots" on my hands, feet and ankles. I suppose those are the resonating after-effects from the big bad systemic VX rash I was fighting earlier. I use clobex steroid cream to deal with those, seems to work ok. Just lately I've had to cut back on my riba, the rash and hot pin pricking "prickly heat" has been too much lately. I simply cannot take this feeling. The incredible itching, the crusty ears and maddening itchy ear canals. I've itched my eyebrows clean off my face. My scalp is dry and flaky and intensely itchy and burning, and now my hair seems to be falling out. All I do is lay in bed, take atarax and sleeping pills and try to remain as still as possible. Then muster enough energy and willpower to put clothes on over my skin and go to work. Unless something changes and the QOL improves at least a little, there is absolutely no way I can go 48 weeks. Right now I just dream and fight every day to make it to 24 weeks. That's my goal, 9 more weeks. I hope I can make it, but I'm dreadfully pessimistic nearly every day that I have it in me.
If I fail to get my SVR (which is looking quite likely at this point), I plan on trying again in a few years with peg and another PI (now that I'm allergic to VX) sans riba. I think I could handle this treatment without the riba. The riba is the real side effect killer, from my experience. If we can just get rid of it while hopefully enhancing current effectiveness, then we'd be getting somewhere.
Lastly, I was getting my blood drawn from our study lab tech and she said "there are four of you all with that bad rash". She explained that there were four people in our group that had a bad rash like mine. I thought that was interesting because when I asked my study nurse that same question, she said that there was no one else who had a bad rash in our group. I guess Vertex tells them to keep their mouths shut on matters of that nature. Plus I heard of another person in pln's (pam's) group that was discontinued from a "horrible rash like nothing we've ever seen". Also I noticed on my consent form that it says under "possible risks and discomforts" section: (when referring to 14 day VX mono-therapy trial results) "In the second study (8 subjects), the most common side effects considered possibly related were skin problems such as dry skin, itching, redness/rash (38%), and headache(25%)." I'm starting to suspect that rash problems from the use of VX may constitute a fair percentage of those who take it, although hopefully/thankfully still in the minority.
Take care.
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