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So directly to your question, I would imagine 40% or more of us here SVR as in the general Hep C population. And a better percentage can possibly be achieved with individualized treatment including changing drugs, dosages and/or treatment term.
I have never heard that "the virus eventually comes back" in geno 1's, so unless someone shows me something credible otherwise, I'd say it is misinformation.
-- Jim
http://www.medpagetoday.com/Gastroenterology/Hepatitis/tb/2152
Hope this finds you well.
-- Jim
I believe fibrosis can be reversed, so for me at an advanced stage 3, I'll welcomed any break from this virus. Peace
In the meantime, you should really try to get YOUR SVR, so that your liver can be spared the ongoing damage of the active infection. Customized, comprehensive therapy regimens can often work even for difficult responders, and some that were deemed to be 'non-responders'. See a very experienced HCV doctor, one with a track record of getting lots of SVR's in those who had previously treated and relapsed, or who had not responded.
DoubleDose
I haven't seen SVR numbers anywhere near 15% for geno 1's since the early days of mono therapy. The actual numbers are 40-50%, maybe higher if you add in the individualized/extended threapy many doctors now use. I don't want to put you on a the spot, but do you have a reference for that 15% number. It's so off the accepted norm I'm concerned it could wrongly scare many new to Hep C from treatment.
DD,
Again for those new here, DD is mixing up two concepts in a single post that a lot of us here have since become familiar with.
Concept 1 is that SVR is durable across all genotypes-- around 97-99% once no virus is found in the blood six months after treatment ends.
Concept 2 is the idea of the occult virus. And while it's true that it is a current "concern" for some in the hep c medical community, equally true is that the implications aren't known. In other words, whatever "non-detectible" virus may be remaining may have no significance whatsover. My hepatologist, and many others aren't concerned about the occult virus at all. Nor are many of us here anywhere near the extent that DoubleDose is.
DD, You know I appreciate your posts on occult virus but here I think it's muddying the waters given the original post. SVR is still considered a "cure" by the majority of hepatologists. After all, once SVR fibrosis (liver damage) in the majority of cases is either stopped or reversed and one is no longer contagious.
-- Jim
-- Jim
"Our results demonstrate that SVR, as defined by a commercial HCV RNA assay, is long lasting, and that clinical relapse is extremely rare in patients who are 'cured' of chronic hepatitis C," the authors said."
The doctors that I see are also firmly in the 'cure' camp, and have been steadfast in their insistence that the virus can not infect most other tissues, especially CNS and nerve related tissue. BUT on a recent visit to one of my treating doctors, he did concede that the virus 'MAY' turn out to be somewhat more like shingles, chiken pox, herpes, etc...in that it MAY be lying dormant somewhere in the body and could possible come out later in life after some extreme immune system compromise. Now I thought THAT was strange to say, in light of all the powerful claims to eradication and 'cure'!. I debated a bit further about the implications of all this, and basically was told that it is an 'ongoing body of knowledge', and that many things have not been either proven yet, or conclusively agreed upon.
In other words, we must all agree to disagree, and wait for further research. Still, we all know and see the benefits of SVR, and it seems durable from what we know, so I agree, the SVR is what we have to work with. I would do it over again twenty times, if I had to, to get to where I am today. That said, Am I totally relaxed and confident that I am now completely 'cured', and that there should be no possibility of future problems???? I really am not quite there yet!
Thanks for your input. Keep up the great tx work...sounds like you are almost there! Best of Luck!
DD
I did relapse after my first round tx. 2 months after finishing 48 weeks of Pegintron combo. Then I did 72 weeks of Pegasys and now I am 1 year and 1 month post tx and still clear. After 9 months clear my doctor told me to consider myself "CURED" and he is one of the top specialist in the country, and also the head of Hepatology for Henry Ford Hospital (so if he can use the word Cured, than so can I)
<a href="http://www.hcvinprison.org/forum_new/topic.asp?TOPIC_ID=162"> Dr Cecil thoughts on Long term SVR Status.</a>
http://www.hcvinprison.org/forum_new/topic.asp?TOPIC_ID=162
Also his use of the word "CURED"
Blessings................TonyZ
If it affects other organs and is eventually proven, can they still call the virus hep c? I guess if they call the chicken pox one varicella when is shingles, they might have to call it by its first name...but this might never have to be discussed.
DD
I actually would like to see if there is any significant difference, as I am one of the symptomatic, low damage group. I guess they need to include the pre tx QOL in there somehow, with another control group....or the same group could be used with both post and pre tx. Too complicated for my non research oriented brain.
I believe when we stick to treating HCV as a liver disease while using the currnts meds; we may have a greater chance for success. When people think combo tx is going to help their arthritis, depression, etc; they may find the sx of the meds to make these conditions worse. The meds may also stress the body to the point of bringing on other conditions; thyriod, heart, etc. If the decision made to treat is to improve liver function then that becomes a goal we can achieve.
With improved liver function, your overall health can't help but improve. Some of the other conditions a person might have may just have to be treated for that specific disorder, not HCV. Much to some's dismay, HCV is not the root of all your evils. Just one man's thought.... Peace
I will talk to people who have finished treatment and cleared, and they are thrilled to find out that certain things they were attributing to old age, etc. were really the hcv all along, and now they are feeling better than they had in years. Conversely, I'll talk to people who have cleared and many of their expectations are dashed once they find out that the arthritis, fatigue, etc. is still with them and/or maybe even worse post tx, even after a long time. And the people who don't clear, seems like they have varying stories to tell as well.
Everything about this disease, treatment, it's such a big grap-bag, I guess all we can do is hang on and ride it out and play the cards we are dealt. (Sorry for all that metaphor mixing.)
I spoke to my hepatologist today regarding my tx term and he said that the best way to kmow when to stop treating is by some test that is only available in one or two research labs in the world, but without this test we're all somewhat in the dark -- as he then suggested another 4-weeks to my tx for a total of 52 weeks. Drat. This experimental test measured something about different t-cell responses that I didn't quite understand. Apparently one response is better than another which I think he called a "spikeda" response as opposed to a more durable one. I may ask him more about this at next months visit. So does treatment really kill the virus or does it allow the immune system to do the job. A lot more questions than answers.
-- Jim
If, at some future date, my situation changes, I will deal with it then. For now, I relish my time with friends and family and being able to live my life to the fullest!
Cheers,
Gail
The newer future therapies, when inhibitors are combined with inf. tx, will also give us a clearer idea of the reality of 'cure' and long term return to full health, mainly because the tx periods will be shorter, and more effective, so we will not expect to see a great deal of 'interferon hangover' or long term after-effects from tx. The post-tx life for SVR's should be clear cut, and provide a good look at what kind of relief is provided.
If we see continuing extra-hepatic type symptoms in these groups, many years after their SVR is achieved (especially those with no liver damage), then we will have to assume that there is more than meets the eye with this virus.
I still would like to hear from our SVR's out there, on a long term basis, to see what the general level of health and QOL is like for them, at the 2 year, 5 year SVR points and beyond.
DoubleDose
That really wasn't my point, my point was that regardless of what you have; combo tx is not going to be your cure-all. And I find alot of people disappointed with tx because of that. As I mentioned before, with your liver being such an important organ; the rest of your body has to suffer if it's not working properly.
Diabetes has been mentioned around here so much, the fact is there is a diabetes epedemic in the U.S. right now. And it has nothing to do with HCV. Yet if your liver isn't functioning properly and a person has a bad diet, sugar, alcohol; the same things that contribute to a non-HCV person to develope diabetes. Then they are probably going to develope diabetes. Peace
Seems the HCV plays havoc with hormonal regulation most probably. I've told my story before: about the time I went to some Grand Poobah hepatologist, with tons of sheepskins on his walls from prominent colleges...who told me that he was pretty much convinced that the only people who get symptoms from HCV are cirrhotic and/or ESLD. Any syptoms (symptoms) I had failing that, were most probably from some other etiology....Didn't even acknowledge liver pain..That's why he didn't disable people for S.S.unless you fell into these categories. What a horse's ass...Only one among a few other stories like that which made me realize that doctors are only human like the rest of us and they are not all good or not all right.
When you read some off the stats that show HCV being a major suspected cause of new arthritic problems, of Sjogrens Syndrome-like eye and salivary problems, of severe fatigue, of cryoglobulinemia, and a newly suspected cause in some cases of diabetes, lymphoma, and various other systemic diseases...you wonder how a smart, highly educated doctor can be so cavalier in blowing off patient complaints, and assuming that it is all in their mind....or they have read too much and are imagining odd symptoms...etc. That is pathetic as far as professionalism, and scientific approach. They should be spending more time trying to understand why these things are happening and what can be done to deal with these issues.
They will laugh at questions about 'viral persistence',... until their favorite professional journals tell them that it may indeed be true.....then they will TELL YOU that you might be dealing with a new phenomena that they have uncovered...called 'viral persistence'.
Now WILL they remember that they heard the question first from you???? Yes, they will say "you know, you were right after all about this issue...I just was not really listening too seriously...." Right after Hell freezes over!
Sorry for the cynicism, but this issue really pushes my buttons. The ivory tower approach to medecine gets us nowhere, and is a poor excuse for science.
DoubleDose
Thankfully, there are some docs out there who truly listen to their patients...who don't employ this self protective attitude of "well, I can't answer that with all that I know, so you must be hysterical and bringing on your own symptoms" type of write-off. After all, if they truly knew all that much, there wouldn't be any chronic illnesses to contend with. That's why I want to work "with" my doctor, I've never been the type to blindly listen to any type of authority....not when the stakes are this high for me.
I am curious as to your post-tx recovery, and symptoms if any remaining. Did you experience 'interferon hangover'?, do you feel better with each passing month? any ongoing issues, problems, etc.? anything that feels like the old extra-hepatic sx? How is your mental outlook?
I hope you are feeling great! Congratulations on the now long-term SVR!!!
DoubleDose
galen: congratulations on 2 years hcv free. now that is something nice to hear. lol
Cin
That's the same summer I got non-A non-B hepititas, we call that HCV now. The story above is way to common, a guy at work got cut the other day, a co-worker went in to help with the blood without any real precautions.
Just as earlier living in a state of denial that you can't get HIV because you're not gay. Today they still want to believe as long as you don't do drugs you won't catch HCV. People better wake up or we're going to be in alot of trouble. Peace
I have seen that 15% reference recently. However it was the percent of individuals that clear the accute viral hepatitis spontaneously when it is first contacted. The other 75% end up with chronic hepatitis C (don't ask me why those numbers don't add to 100%). Could that possibly have been the reference that you saw? The term SVR was never used for the 15% that cleared spontaneously - that is only used in reference to treating, I believe
cquest - unbeliveable about your daughter - still at that invincible age, eh? I am still trying to figure out how the razor blade got in the bathtub......active little guy, I guess. My daughter-in-law walked in the bathroom a month or two ago to find her 5 year old "shaving" like dad --- blood all over. What are these little guys thinking?
spud --- yeah, I buy my toothbrushes in bulk too. --- like to leave a couple of spares in the spare bathroom for guests. Kind of hostess with the mostess- like, I guess.
friole
Cin
There are so many published studies, especially on the internet; that really have no reputable basis. This is very disturbing as alot of people are trying to base there care on what they're read on the internet.
Many fringe researchers, doctors, et al are publishing studies with such schewed data that it is so imperative that everyone checks and re-checks the sources of their information.
Just one man's opinion....Peace
Previously, I was a farmgirl/tomboy with great grades in school. Riding, hiking, skating, running. Always tanned beautifully, never, ever burned. You get the picture. Now, my grades are slipping, just can't think clearly all the time, lethargic, depressed. Even was put in state asylum for two weeks.
I am now 20 and have DDD. Where did that come from? Severly depressed, brain fog galore, hurt all the time everywhere, can't remember a friggin thing, burn every summer, lucky if I can walk a couple blocks. somewhere in there I had three kids.
37 years later I am in line for two disc replacements in lower back, weird arthritic pains everywhere that seem to hurt 10X more than they should, brain fog just terrible. Also had am MRI of shoulder to rule out a tear that showed abnormal bone marrow recently. That's how I found out about HCV. I could go on.
Anyway, noone is ever going to tell me that the change in my life is not directly related to contracting HCV from the knife weilding surgeon. Everyone's body deals with things in their own way. Our outside stimuli are all different; family, food, chemical exposure, social life, etc. So, we will react differently.
My point: Don't doubt the fact that HCV can make physical changes in our bodies from the very beginning. Always listen to your body and know it by heart. You are your best advocate. I always tell people we need to know more than the doctor if we want to gain our health back in any situation. I can usually go to doctor and tell him what is wrong before he DX anything and am usually right. All because I know myself better than anyone. Don't let anyone take your faith in yourself away.
Well, I have vented enough. Hope I haven't hurt any feelings and maybe someone here has been helped or encouraged.
MissMiss