I keep hearing that after 6 months UND/SVR we can consider ourselves cured so to speak.
has anyone relapsed after 6 months? Or heard of anyone?
It just seems so sad to me that we are seeing so many relapses. I hear that its around 50% that are cured... so I shouldn't be so discouraged. It's all so sad to me!
My husband is making lots of plans for career changes after his treatment. It's all a little scary as I know the odds/percentages.
I relapsed after 6 months. It was not fun to hear! But also I think that to give up on life and just sit and wait is not good either. I guess for me the insurance thing would be a big qualifier in changing jobs.
So much I think, about most things is attitude, not to say I haven't had the doom and gloom moments. I do, but every day as corny as it sounds, I look to the blessings and the things I can do, help someone else or just making the effort. For me bottom line and hope this does not sound terribly corny and silly, but hope and perseverance are all we have. So it's ok to be scared and fearful, and to be the reign holder, but be glad he is also thinking forward!
Again hope this does not sound patronizing or corny!
After six months UND, SVR is supposed to be 98-99% durable. After one year UND, close to 100% durable.
Sorry about your relapse, but when you say you "relapsed after six months", are you saying that you were UND at six months and then at some later point had detectible virus again -- or are you saying that you had a viral load test at six months and found out you had the virus?
I ask because I think what "Pink" is asking is if there's anyone who was UND at six months post treatment and then at some point after that became detectible again.
Yes, I was UND at 6 months, antibodies still there, but no virus. Because of a bad car accident, I have other concerns so was rechecked again at 9 months and it was back. Sort of strange thing is this, at time of accident, my levels were all normal, I truly think all the steroids had a hand in this.
But yes your right, I should of been more clear ;>)
I had heard of someone relapsing on another forum. He did the treatment fior type 3 (6 months), then a few years later, he now has type 1. Either the initial genotyping was wrong and he didn't treat the virus long enough, or he was reinfected.
But, it can happen, when my physician's assistant gave me my 6-mo. post tx results, he told me that he knew of another patient who was clear at 6 months post tx, then relapsed.
Thanks for the clarification, and I'm assuming that the tests used at both 6 months post and 9 months post were of similar sensitivities although one would think that by six months the virus either would be in full force or not -- however the possiblity does exist that it was smoldering at six months and under the limit of the test, assuming the six month test wasn't very sensitive.
In any event, SVR as defined as being UND six months post treatment, seems to be durable around 98% and only approaches 100% when you are UND at the one year mark. It's unfortunate that you appear to be one of that minority.
I'm sorry to hear about the relapse; there are quite a few of us in that boat but it must be particularly hard to get those results after believing oneself to be in the clear. It's quite possible the steroids did play a role. In hcv liver transplant patients there is a well-documented correlation between viral resurgence and the administration of steroids as immunosuppressants to avoid rejection of the new organ. See also the discussion of a recently-reported case in the "comes back" thread.
It's an unusual outcome and any additional information you can provide about when you started the steroids after tx and the dosage involved may be a helpful warning to others.
I am happy to share, I was involved in a head on collision in Germany, woke up 6 weeks later in Washington D.C. My injuries were broken bones and both lungs collasped and I developed ARDS, and I failed a stym test, adrenal gland hemmorage. Thus the steroids.
At the time of my accident my levels were all pretty much normal. So much so they did not see the need to do a liver bioposy. ( I do have some questions that they are not able to answer about this) I am just thankful it was military Docs who treated me, they are the best at trauma and no insurance worries, they took extraordiary measures to save my life. But I digress.
As I recovered my levels escalated, There is no immediate stopping of steroids, you must be weaned from them and after 6 months I passed stym test, four months later I was off. So I was on them a total of 10-11 months.
But in the mean time I started Pegysus & ribo, So for at least 6 months of tx I was on predinsone.
I have read many articles that most (or a high amount) transplant patients eventually need a liver transplant 5 years or so down the road. While steroids help with the anti rejection of transplants, they also cause much damage to liver. Steroids can also cause cataracts.
So I do feel in some way (that Jim mentioned) that the virus hid and my results were not accurate I showed false PCRs.
It should also be noted we moved from germany, back to the states, so while I stayed on TX, there were time fluctuations and such.
Thanks and to you all also best wishes, and don't stop fighting and kicking viral butt!
The trend today is to either eliminate steroids from HCV transplant recipients' drug regimens or use low doses for a very short time. I was transplanted in 2000 and was weaned off prednisone within 7 weeks of my surgery. Now my center doesn't use steroids for HCV patients unless an organ rejection issue arises. Mike
That is good news indeed! I have not had a transplant, but I do know steroids while helpful in many ways they can also cause much damage. My reasons for prendisone and another I forget the name of them, were based on adrenal gland damage and ARDS.
Continued best wishes to you!
Just one more point that I am not totally sure is accurate, but I had understood that is was not just those with HCV who reacted to steroids, that this was the case of all transplant patients~ That even healthy livers were damaged from them. Is this in correct info? Curious...
hey there, now i sit here and wonder if anyone out there have relapsed after 12month post??????
Sorry to here that u have relapsed after ur 6th.
What about me now, i am sitting here and pondering on that very thought. They want to re test me on the 24th month, and that makes me wonder if the 12months post UND is really a confident time frame.
MO: There are other studies to suggests that steroid use will cause a relapse of HCV.
Other than a few isolated individual case histories, I'm unaware of any studies on this. Do you have the studies or is this something perhaps that you read here? I remember when treating reading all sorts of things re steroids, including using steroid nasal sprays might lower my chances of SVR, which, at least according to my doctors just isn' true. I'm certainly not advocating steroid use, but I think each case has to be looked at individually, as to the risks versus the rewards. But to do this, we really have to identify what the real risks are in a particular case, if any.
I am not really knowledgeable about non-liver transplantation. I know that steroids are thought to be bad for HCV liver transplants because of fear of increased viral replication. Beyond that limited setting I am unable to comment. Mike
When you say "In hcv liver transplant patients there is a well-documented correlation between viral resurgence and the administration of steroids as immunosuppressants to avoid rejection of the new organ" can you provide us with the totality of what this evidence is? I've heard of a few very rare isolated cases that basically amount to a precious few anecdotal examples of this (supposedly) happening. To me a "well documented correlation" rises to a level well beyond a very small number of anecdotal examples and leaves a bit more ambiguity than what you seem to be suggesting. But maybe there's more evidence of this sort of thing than I realize, and so if you wouldn't mind presenting it, please do so we can have a look at it. And please include all known "well documented" cases so we can see how many cases there are of this phenom. Thanks in advance...
I wouldn't worry prematurely. Just make sure he stays 100 percent comliant with tx, eat your Riba with some healthy oils in the meal, but not much fiber.
All odds aside, we are all individuals. I would suggest he keep his dose as high as possible as long as possible, and also consider doing what HR discusses yesterday regarding gradual tapering of dosage at end of tx. the relaspe rate was smaller for those who tapered.
thread is called:
Hepatitis Researcher or Anyone one else with a good idea
20 years ago they came up with antiinflammatory immunosuppressants that worked better at controling rejection than did steroids. I know because I advocated for a friend, she had 2 rejections, and her hospital would not switch her to P35 which had a far better record at the transplant centers in Philly and UCLA...but the old school mind set had to be changed...it took years.
I don't know if there are nay correlaries for you here, as far as substances to help the adrenal shutdown. It's unlikely since you aren't fighting rejection but just to make normal needful amounts.
However, it brings up an interesting question, like how much help might these proteins be in joint health and other areas normally effected by adrenal insufficiency. It might be worth exploring.
However, the likelihood is your weaker gland was the one spared and it may have only been producing 10% of your output....so now this will just take it time to come up to double production duty...you can help this happen by not overstressing your system either with work, excess excersise or uneccesary running around, or with any chemical stimulants such as caffiene.
deb - thanks for clarifying. If I understood, the steroids had been long discontinued by the time you reached your UND 6-month post tx test. Though they might have played a role in tx failure, it seems you got to a successful SVR. It seems unlikely they played a part in the (unusual) relapse after that point, but who knows...Sorry about the disappointment and best wishes if you decide to re-tx
mremeet: here's a couple of references
Henry SD, Metselaar HJ, Van Dijck J, Tilanus HW, Van Der Laan LJ
.Impact of steroids on hepatitis C virus replication in vivo and in vitro.Ann N Y Acad Sci. 2007 Sep;1110:439-47. PMID: 17911459
"Evidence suggests that steroid boluses used to treat acute rejection are associated with an increase in HCV viral load and the severity of recurrence. "
Immunosuppressive modifications in hepatitis C.
Current Opinion in Organ Transplantation. 6(4):327-330, December 2001.
Sheiner, Patricia A. MD
" High cumulative doses of steroids and treatment of rejection with steroid boluses appear to have the greatest impact on both rate of recurrence and severity of recurrence. "
and a medscape cme review:
"The known side effects of steroids -- including infectious risk, loss of bone density, diabetes, hypertension, hyperlipidemia, worsening of hepatitis C virus (HCV) infection recurrence, and growth retardation -- have led some centers to attempt to withdraw steroids very early in the posttransplant setting or to avoid them altogether.
This is not area I've spent any time looking at. How to reduce/replace steroids seems to be an area of controversy - but a correlation between post-transplant use of steroids and hcv recurrence seems to be a recognized problem
Thanks for all your thoughts, great info and great references> At the time the steroids were given, my HCV was not the priorty keeping me alive was the first order of business. It was said to me not many come back from where I did, so the unraveling and fixing was a long slow process. But I got there and yes, I am now Tx again. I am on Infergen now and ribo. Unfortunately my first PCR and viral load week 4 was not good. Since then I have read in this forum about adding more fat to diet,
So working on that.
I guess for me the point of cause and effect of steroids is not always balanced, sometimes you have to have them, but be aware they do cause damage.
So agree there are some other much better options this days, apparently my adrenal was hemmoraged in the trauma of the accident, and I so agree that the small little gland and the liver need to be looked at together, if the liver and hormones inter relate together, the thyroid then why not the adrenal? It has much to do with energy.
I have read some articles on transplant and steroids, an Uncle had a transplant NONE HCV, 5 years later he had a liver transplant, the cause of liver failure was steroids.
Thanks again all
Thanks for the info, but are links available to each of those references so I can read the entire text describing each event? (or if you have the text can you post it?) Or maybe a collation of the total number of documented cases where this has happened? Plus, are any of the reports referencing the same events? The reason I ask is because I've seen that before, especially in regards to the occult/persistence thing. A new "study" or report is published that references the same source data and voices similar conclusions, and then someone will read the new report and say "man these studies are piling up!" when it fact no new data has been presented, it's just another take on what the same set of data means (or in this case what the sparse anecdotal events mean).
yeah, I agree completely on the dangers of the "echo effect" - there's no substitute for tracking down the underlying data. I ran into that recently in following up some reports of acute infection resolving spontaneously over an extended, two-year period. Turns out those reports all went back to a single '00 study that followed 15 Italian study volunteers and seems to be pretty much an outlier relative to all other research in the area.
However, as I noted above, post-transplant hcv recurrence is not an area I'm familiar with (Mike will be a better source) and I don't know of either a good open-access review or a recent quantification of steroid-related impact on recurrence. Also, my access to journal content is not working at the moment - which might be a good thing given my recent obsession with hcv pubs.
Try googling for "+hcv +recurrence +steroid" - there seems to be no shortage of transplant-related material. Also, on pubmed, M Charlton from Mayo has a series of reviews on the topic that are a good starting point for further searches:
"cumulative exposure to corticosteroids is associated with increased mortality, higher levels of HCV viremia and more severe histological recurrence."
Hepatitis C infection in liver transplantation.
Am J Transplant. 2001 Sep;1(3):197-203. Review.
BTW - recurrence here is in the context of post-transplant - there's plenty of virus to recur and the patient's immune system is obviously not hcv-resistant (or they probably wouldn't have needed the transplant in the first place). I'm not at all sure any of this applies to post-SVR if that's what you're skeptical about.
the latest research (published in 2007 I think?) to help answer why there appears to be more viral replication post transplant in those on steroids, and being given steroid boluses - and Mremeet, there were apparently documented numbers that promptes this concern - but at any rate, this latest study found that it seems the steroids themselves do not actually help or cause HCV to replicate. In fact, they help (just slightly though) in retarding replication.
The reason so many patients post transplant who've used the steroids seem to become infected again so quickly, according to this study, appears to be that the steroids suppress the body's natural immune system's ability to fight the HCV.
To me, this means that you would have to extrapolate that information out to your particular situation I think, and where you are in treatment, in order to decide what impact steroid use might have for you personally. And by you, I mean "any given person." It is a question with which I am currently struggling myself.
Not of a liver transplant nature BUT, how many people on treatment use a steroid to combat the Riba Rash and does these steroid creams have any impact on the virus? We use these creams in low doses in conjunction with interferon and ribivirin over the same long period of TX or are these creams so minute to where they have no effect one way or the other.
I think it would depend on how much you used, but I kind of doubt it (I was thinking about that student track star who overdosed and died last year after using so much of one of those ben gay or icy hot type gels or creams over a long period of time. I guess its pretty rare, but she was also really slathering huge amounts of the stuff on her muscles pretty continuously). I don't know that there'd be enough, especially in a non prescription tube of hydrocortisone, to make a difference.
One study said that up to 5mg per day orally of corticosteroid was safe for those on treatment who had RA.
Topical steroids and topical steroid nasal sprays (such as Nasonex) are commonly prescribed on treatment. Quite dfifferent from oral or injectable steroids, or so my doctor suggested. If prescribed for a condition, would not worry, but of course run things by your doctor. I do not believe Ben Gay and other icy hot products contain steroids, but could be wrong.
In 2005 while on peg i had an anphylatic rxn. to seafood. 2 days in ICU on iv steroids and sent home on 2 weeks of p.o. steroids my hepatologist said there was a good possibility i would turn up positive again, but it never happened.
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