Aa
Skin conditions and hepc travels through the body
I'm mostly calling Jmjm but any OPINION or possibilities are welcome. My extra hepatic symptoms were quite unusual and possibly not even connected. I dont know when I got hepc, a few guesses but don't know. Through my life, I have dealt with 4 PID's (pelvic inflamitory disease) starting at age 4. (Iknow strong sign of abuse, it happened)I was uable to get from class to class without resting by gr.10, joint pains and visual disturbances by then also. Major something at 21 (took about a year to walk and kind of run again)They said MS but I did not believe them and they've since changed to MAYBE stroke( no-one wants to put anything in writing)But always weakness, fatigue , brain fog to such an extreme I sat in a university class but couldnt understand language at all! Trying to hide all this stuff to come off as normal was pretty taxing, especially after my infancy and todlerhood (and some later) twisting of the heart. I have always wondered if the virus travels through the bodyin some people creating damage before it settles in the liver. I have had 2 transfusions in the 80's(babies) but they told me it wasn't then. Hard time believing this medical system. What do you think about the travelling virus idea? I've obviously spent too much time thinking about it. By the way, life is good. It just took a while to get here.
Short term sx's of pred are thirsty and pee a lot. Lots more sx if pred is long term.
Best to you and I hope it works for you.
Best to you and I hope it works for you.
the prednisone course is only 5 days so i'll let you know. My doc asked if I wanted a referral to specialist but because I never had problems pre-tx I just wanted to give this a try before dealing with MORE doctors. I hope it bleedin works!! It makes sense the interferon kicked me into high gear and hopefully prednisone will kick it back down. There are side effects, I've just got to google for a good list. Sleep time, up in Regina it's 12:00!!
Thankyou DD and califia for the links, have started with "choices". Very impressed (and free!!)
Thankyou DD and califia for the links, have started with "choices". Very impressed (and free!!)
Here is a link to a recent article in Hepatology regarding the state of research and current understanding of ExtraHepatic manifestations in HCV. It is pretty elaborate, and comprehensive and well worth a careful read.
http://www.natap.org/2006/HCV/070606_01.htm
DoubleDose
http://www.natap.org/2006/HCV/070606_01.htm
DoubleDose
Thanks people, I've wanted someone to ponder this with for awhile. I'll be checking out the link. Jim, my doctor put me on prednisone for dry ,cracking rash and it just has to be on my face and chest. Have you tried it? trouble with it? side effects? steroids creep me out!!
Mr. DD, I am 50 yr. old female(guess you knew that), geno3, could have contracted very young but possibility still with first baby,even though the system said no, so thats about 25 yrs. ago. I've known for 10 but just couldn't justify the harsh treatment yet. WAS stage 3 in 2000 so knew I had to get on it. I was very involved in alternate help but never looked to clear the virus, just put on hold and regenerate. Just finished 22/24 weeks Pegasys etc on 26 of June as digestive system was bleeding and hemo was down to7.3. We figured we'd look for luck as the eprex was really hard on me and I was a bit of a mess. Go for my 4wk check on Fri., couple days early but sometimes you just need to believe in a little magic. I was rvr so good boost for the magic side. Thanks so much all......Diane
Mr. DD, I am 50 yr. old female(guess you knew that), geno3, could have contracted very young but possibility still with first baby,even though the system said no, so thats about 25 yrs. ago. I've known for 10 but just couldn't justify the harsh treatment yet. WAS stage 3 in 2000 so knew I had to get on it. I was very involved in alternate help but never looked to clear the virus, just put on hold and regenerate. Just finished 22/24 weeks Pegasys etc on 26 of June as digestive system was bleeding and hemo was down to7.3. We figured we'd look for luck as the eprex was really hard on me and I was a bit of a mess. Go for my 4wk check on Fri., couple days early but sometimes you just need to believe in a little magic. I was rvr so good boost for the magic side. Thanks so much all......Diane
Jeez, one more thing. The female side of my family has immune system problems, the males deal with cancer..D
Morgaina,
A few questions: How old are you now? How long do you believe that you have had HCV? Any similar history or signs of related symptoms in either parent or siblings? Did you have elevated Liver Functions in early years, etc?
By the way, I do believe that the virus may be much more than a liver/ blood restricted virus. I think the virus may 'like' the liver, and tends to show up at high levels there, especially if it is at high load levels in the bloodstream. I suspect that the virus causes so many 'extrahepatic' symptoms in lots of people because it may indeed 'infect' or inhabit other areas of the body, and create problems in other organs or systems. I think that brain and CNS involvement is a big possibility, and many brain imaging studies show very abnormal patterns in HCV positive people. Now many doctors still believe that the extrahepatic stuff comes only from a system-wide immune reaction, like CD-4 and CD-8 cells constantly revving up the system, and attacking tissues, but I am not sure I buy that scenario. I am sure some of the immune response causes problems, but I still think the virus infects far more organs and tissues than accepted currently by much of the medical community. I say 'much of' because in recent years more and more researchers and their studies have pointed to HCV in wide ranging organs, and tissues, and surmise that the virus is causing the joint pains, brain fog, and other problems on its own. Also, there are many reports of a strange, low level residual replicating virus lingering on in the body long after successful treatment and SVR. There have been reports of 'relapse' in SVR's eight years after viral 'eradication. This is additional cause for more study, and concern about what the virus might be doing.
Please look at past threads on this subject, over the past three to six months, and you will see lots of discussion around these issues.
Please continue your commentary and dialogue on the forum. We need input on this subject from everyone affected. There is much more to learn about HCV, and we all need to push the researchers to get more answers!
DoubleDose
A few questions: How old are you now? How long do you believe that you have had HCV? Any similar history or signs of related symptoms in either parent or siblings? Did you have elevated Liver Functions in early years, etc?
By the way, I do believe that the virus may be much more than a liver/ blood restricted virus. I think the virus may 'like' the liver, and tends to show up at high levels there, especially if it is at high load levels in the bloodstream. I suspect that the virus causes so many 'extrahepatic' symptoms in lots of people because it may indeed 'infect' or inhabit other areas of the body, and create problems in other organs or systems. I think that brain and CNS involvement is a big possibility, and many brain imaging studies show very abnormal patterns in HCV positive people. Now many doctors still believe that the extrahepatic stuff comes only from a system-wide immune reaction, like CD-4 and CD-8 cells constantly revving up the system, and attacking tissues, but I am not sure I buy that scenario. I am sure some of the immune response causes problems, but I still think the virus infects far more organs and tissues than accepted currently by much of the medical community. I say 'much of' because in recent years more and more researchers and their studies have pointed to HCV in wide ranging organs, and tissues, and surmise that the virus is causing the joint pains, brain fog, and other problems on its own. Also, there are many reports of a strange, low level residual replicating virus lingering on in the body long after successful treatment and SVR. There have been reports of 'relapse' in SVR's eight years after viral 'eradication. This is additional cause for more study, and concern about what the virus might be doing.
Please look at past threads on this subject, over the past three to six months, and you will see lots of discussion around these issues.
Please continue your commentary and dialogue on the forum. We need input on this subject from everyone affected. There is much more to learn about HCV, and we all need to push the researchers to get more answers!
DoubleDose
I have erthyma (redness), itching and scaling on face, chest and neck so I understand what you are going through. Definitely not the areas you want to have skin problems.
Have you gotten a diagnosis yet? Are you seeing a dermatologist? I've had several diagnosis' including seb dermatitis, rosacea and psoriasis. There is probably overlapping. As I'm starting to discover, dermatology is part science, part art, and mostly bullsh*t, the latter being your average derm. Sometimes it's like they throw this at you and if that doesn't work they throw that. Anything to avoid spending the time necessary for a proper diagnosis and to get you out of the room in the allocated 15 minutes. Very frustrating. Can you hear thefrustration in my voice. LOL.
No, I've never tried Prednisone, but I hope it works out for you. Maybe I'll mention it at my next derm visit if my current regimen doesn't work. Hope you feel better and please check back and report how things go.
All the best.
-- Jim
Have you gotten a diagnosis yet? Are you seeing a dermatologist? I've had several diagnosis' including seb dermatitis, rosacea and psoriasis. There is probably overlapping. As I'm starting to discover, dermatology is part science, part art, and mostly bullsh*t, the latter being your average derm. Sometimes it's like they throw this at you and if that doesn't work they throw that. Anything to avoid spending the time necessary for a proper diagnosis and to get you out of the room in the allocated 15 minutes. Very frustrating. Can you hear thefrustration in my voice. LOL.
No, I've never tried Prednisone, but I hope it works out for you. Maybe I'll mention it at my next derm visit if my current regimen doesn't work. Hope you feel better and please check back and report how things go.
All the best.
-- Jim
Hi Morgaina,
Thanks for the confidence but a few other members are a lot more versed/interested in extra-hepatic and/or persistent/occult virus than myself. Double Dose is quite knowlegeable in both and Cuteus mentions the extra-hepatic part a lot. So I've flagged both.
Skin problems on the other hand, is a subject I unfortunately do know something about, in a very personal way.
I did have some skin problems prior to treatment but very minor.
From the consensus of what I experienced, read, and doctors I spoke to -- the treatment drugs (primarily the interferon) caused these conditions to flare, and I'm now still dealing with them 18 weeks post treatment.
Today, I asked my derm if these symptons/conditions will revert back to pre-tx levels as more time passes and he said not necessarily, but we can always hope they will become milder.
So in the case of skin problems, I don't believe (at least in my case), that they were caused so much by the virus itself monkeying around in the body (extra-hepatatic) but rather they were caused by the treatment (interferon). And yes, Virginia, the re is a Santa Claus and sometimes the treatment can be worse than the disease :)
Could there have been an underlying extra-hepatatic factor to my skin problems -- of course -- but like I said, previous to treating my symptons were exteremely mild.
Hope this helps and glad that "life is good" for you these days.
-- Jim
Thanks for the confidence but a few other members are a lot more versed/interested in extra-hepatic and/or persistent/occult virus than myself. Double Dose is quite knowlegeable in both and Cuteus mentions the extra-hepatic part a lot. So I've flagged both.
Skin problems on the other hand, is a subject I unfortunately do know something about, in a very personal way.
I did have some skin problems prior to treatment but very minor.
From the consensus of what I experienced, read, and doctors I spoke to -- the treatment drugs (primarily the interferon) caused these conditions to flare, and I'm now still dealing with them 18 weeks post treatment.
Today, I asked my derm if these symptons/conditions will revert back to pre-tx levels as more time passes and he said not necessarily, but we can always hope they will become milder.
So in the case of skin problems, I don't believe (at least in my case), that they were caused so much by the virus itself monkeying around in the body (extra-hepatatic) but rather they were caused by the treatment (interferon). And yes, Virginia, the re is a Santa Claus and sometimes the treatment can be worse than the disease :)
Could there have been an underlying extra-hepatatic factor to my skin problems -- of course -- but like I said, previous to treating my symptons were exteremely mild.
Hope this helps and glad that "life is good" for you these days.
-- Jim
Here's a truly excellent website sponsored by Hep C Challenge that covers these issues and many others: http://hepcchallenge.org
When you get there, check out the descriptions of their lobbying and activist work and then click on " Choices" for what I find to be the most thorough and enlightened patient information available. Or just try this:
<a href=http://www.hepcchallenge.org/choices/coverpagep.htm>CHOICES</a>
When you get there, check out the descriptions of their lobbying and activist work and then click on " Choices" for what I find to be the most thorough and enlightened patient information available. Or just try this:
<a href=http://www.hepcchallenge.org/choices/coverpagep.htm>CHOICES</a>
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