Sorry, I haven't heard about the Berg study, but I know of way too many people who were 'virtually undetectable' or even undetectable at 12 weeks (which you were not), who then relapsed after only 48 weeks of treatment.
How old are you, if I may ask? I don't know what the word 'neuropathy' means - if it means 'interferon can do permanent damage to your body' - it can, I ended up with a permanent hearing loss and constant case of tinnitus on only 24 weeks of treatment.
All of your reasons for wanting to stay on treatment are valid. Some of the people I know who relapsed after 48 weeks are now doing another 48 or 72 weeks of treatment with the other brand of interferon.
I have heard something about the advisability of doing 36 more weeks of treatment after you are undetectable -so for you that would be 26 + 36 = 66 weeks, as you can't be sure you were clear at week 24. I'm sorry I can't be more helpful.
Can't you get the military insurance to pay for Procrit? A higher Hgb would make your life and this decision a lot easier.
All the best,
Whoops - 26 + 36 = 62 weeks, I was never very good in Math!
I was a late responder - UND at week 17, G1A, grade1 stage 1. I finished 72 weeks in April '08. Yesterday I got the 1 year post TX results and I am SVR.
I had to convince my Dr. to let me do the extended TX. He agreed after reading the Berg study. A half dozen late responders here have achieved SVR by doing the extra 6 months. I don't think I would be SVR without having extended tx.
Berg has published a few things. The one many people cite is:
Thomas Berg, "Tailored Treatment for Hepatitis C,
Clinics in Liver Disease", 2008-Aug; vol 12 (issue 3) : pp 507-28, vii-viii
I think you can find it on the Web
I totally relate to your situation. We're very similar. I was a slow responder, relatively low level of liver damage, but for a variety of reasons I wanted to continue. In my case, I was able to convince my doc to support by decision. I've got 9 weeks to go to 72 weeks.
I have no idea specifically what your doctor has in mind, but I understand my doc that one of the principles at work is to balance potential gain against harm. There are the risks involved in extending the treatment vs. the chances of SVR. They are after all doctors and want to look out for your overall health. But I doubt the issue is neuropathy, that's a rare side effect and certainly not a standard concern.
Also, consult this brand new article from Hepatology:
This reviews the current state of the science on extending treatment.
There's only one more thing I can think of that might help: I had a rough time my first six months but when I went into see my doctor for the big meeting about extending I was doing pretty well. I had started exercising and I'd become much less fuzzy headed and draggy. I know his perception of my physical state played into his decision to let me continue.
All the best. Let me know if I can be of any more help.
I FINISHED 72 weeks a year ago and I just got my 1 year post tx PCR and I'm STILL SVR!!!!!!!!!
Extending worked for me.
MYS, I am 50 yrs old, 1A probably had it since blood transfusion in 1979. Always played sports and still play competitive sports (I don't win as often as before tx but still win some and closely competitive in other matches) I did take Procrit when hgb was in the 7's & 8's to avoid transfusion but when my hgb got back up in the 9's the Dr hasn't mentioned it. Except for those few weeks, my hgb has been in the 9's all thru tx. I have 2 vials left, maybe I should just use it??
Wyntre9, My gut tells me to fight tooth & nail for the 72 also. Although, I have to admit July seems so tempting; only 3 more months instead of 10! But then again, 24 weeks of the new drug instead of 36 now sounds tempting too. I JUST WISH THEY COULD NAIL DOWN WHAT REALLY WORKS FOR EVERYONE. The indecision is harder for me than setting my mind to something and just doing it and fighting the side effects as they come. I was so set for 72 since I found out at wk 12 VL was 955; now I am questioning my decision and that is more mentally taxing than just knowing what to expect
WOW, 9 weeks to go! I dream of that day! I agree, exercise does help both physically & mentally. I am 50 but even on tx I am still mistaken for being in my 30's. I also have been told by the Dr. that is probably one of the reasons I did not have more liver damage even though I have had HCV for 30 yrs. I don't know if that is true though. Even when my TSH was between 66 & 117 I exercised. The only weeks I did not exercise was when hgb was 7.1 to 8 because just standing up made me dizzy. Once it got to 9 I have been back to exercising at least 2-3 times a week.
That's a tough one, I hope this is the Berg study your doctor was referencing. If not you can run a search on pubmed. If I were in your position, I would count my winnings and leave the game now. Of course it's truly your decision. Treatment strategies are turning away from txing for 72wks, not enough is known about what will happen down the road. good luck
Extended treatment duration for hepatitis C virus type 1: comparing 48 versus 72 weeks of peginterferon-alfa-2a plus ribavirin.
Berg T, von Wagner M, Nasser S, Sarrazin C, Heintges T, Gerlach T, Buggisch P, Goeser T, Rasenack J, Pape GR, Schmidt WE, Kallinowski B, Klinker H, Spengler U, Martus P, Alshuth U, Zeuzem S.
Universitätsklinikum Charité, Campus Virchow-Klinikum, Universitätsmedizin Berlin, Germany. thomas.***@****
BACKGROUND & AIMS: The treatment of patients infected with hepatitis C virus (HCV) type 1 remains a challenge necessitating innovative strategies to improve treatment outcome. The extension of treatment duration beyond 48 weeks is one possible strategy to address this problem. METHODS: The efficacy and safety of 48 weeks (group A, N = 230) vs 72 weeks (group B, N = 225) of treatment with pegylated-interferon-alfa-2a (180 microg/wk) plus ribavirin (800 mg/day) were studied in treatment-naive patients with HCV type 1 infection. On-treatment and sustained virologic response (SVR) 24 weeks after stopping treatment was assessed by qualitative reverse-transcription polymerase chain reaction (sensitivity 50 IU/mL). RESULTS: Overall, no significant differences could be observed in the treatment outcome between both groups. End-of-treatment and SVR rates in groups A and B were 71% vs 63% and 53% vs 54%, respectively. Patients with undetectable HCV-RNA levels already at weeks 4 and 12 had excellent SVR rates ranging from 76% to 84% regardless of treatment group, whereas patients shown to be still HCV-RNA positive at week 12 achieved significantly higher SVR rates when treated for 72 instead of 48 weeks (29% vs 17%, P = .040). A particular benefit from extended treatment duration was seen in patients with low-level viremia (<6000 IU/mL) at week 12. The frequency and intensity of adverse events was similar between the 2 groups. CONCLUSIONS: Extended treatment duration generally is not recommended in HCV type 1 infection and should be reserved only for patients with slow virologic response defined as HCV-RNA positive at week 12 but negative at week 24.
PMID: 16618403 [PubMed - indexed for MEDLINE
Thanks, Is the (<6000 IU/ml) interpreted in different ways? Is my 12 wk viral load of 955 within this range. I ask because some times I hear that a low VL of being less than 2 million and sometimes hear it referred to as less than 400,000 IU/ml. Is this the same thing?
Your 12-week viral load is definitely in the range that Berg is discussing. In other words, you fall precisely into the category, according to Berg, where one would consider extending from 48 weeks to 72. I don't think there is much debate that extending to 72 weeks will significantly improve your chances of SVR. If you stop at 48 weeks your chances of relapse are quite high. They are much lower if you extend.
In your second sentence you are talking about the starting viral load level, prior to starting treatment. That's a separate issue.
I'd be curious to hear more from Fretboard regarding his statement that doctors are turning away from the 72 week treatment. Do you mean they are turning away from it because of optimism about new treatments in the pipeline or because of negative information coming out about the treatment itself? The statement is news to me. I thought the idea of extending treatment was gaining wide acceptance.
I just got back from vacation in San Francisco so I have not had time to read the entire thread, but if you need the fulltext of the Berg study, just send me a PM with an email address to you, and I will send you the fulltext. I have another goodie about 72 weeks as well. I will look for it tomorrow. Have to get some sleep first after the long flight.
"Treatment strategies are turning away from txing for 72wks, not enough is known about what will happen down the road."
Definitely not true for treatment strategies in Germany and Sweden. Remember Berg is from Germany, so he has a lot of impact there.
"I'd be curious to hear more from Fretboard regarding his statement that doctors are turning away from the 72 week treatment. Do you mean they are turning away from it because of optimism about new treatments in the pipeline or because of negative information coming out about the treatment itself"?
No, it's just my opinion nothing more. It's something I've noticed when seeing posts on this forum and it could be just because in those cases the doctors felt that the quality of life issue was not balanced enough to justify a 72wk tx. Also, yes the reasoning at times is that there is optimism about new treatments in the pipeline. I've just been noticing more posts about doctors either saying no to 72wks, or discouraging it.
I'm still wondering if there is another Berg study involved as the one I placed up there doesn't say anything about neuropathy. And as far as the poster goes, the study I placed up there fits his decision to tx more than it doesn't. tough decision, for sure
I would want a whole lot more info from your doc..just an anedotal more neuropathy is not sufficient.
Many folks do have some neuropathy issues develop, but you are also looking at a 12% higher rate of SVR with ex. tx for late responders.
The thing you weigh, is could I live with some neuropathy....it may be having your liver cured makes that a trade off worth considering. I do have some numbness in my toe tops now, which could be related to the treatment, or not. Certainly numbness is livable, sharp pain type neuropathy may not be.
However, you mentioned your coverage. If this doc is treating elder military types and vietnam vets she may be seeing more probs than the general public chiefly due to the age of her patients.
Then to, one cannot rule out whether other issues such as being pre-diebetic or diebetic may not have had more to do with neuropathies than the tx. The treatment can bring on a rise is normal blood sugars, leading to diebetic side effects, and one should be continually monitored for this while on tx. However, not all doctors do monitor or concern themselves with this, or with treating insulin resistance if it exists.
I am on week 80 of tx. and I would no way be talked out of extended tx based on when I went under and the research I read. However, if it may be in your best interest to read and print out the studies on ex. research and take them to her.
It's harder to deny the good outcomes when research is presented to a doc.
If you already have many health issues, maybe the extention seems logical...but you will still have to treat eventually...and there is no guarantee you will be in better health then, or more able to tolerate what new SOC may entail...and the Insurance as you point out may not be there.
Make sure and read some of the recent threads in this forum on Insulin Resistance and the like...and make sure that the tx. is not raising your blood sugars, or if it is, then you may want to consider reading my thread on Metformin, or look at the many studies Cowriter has given...or read her journal.
Even if my feet remain the way they are....it still beats losing my life to this awful disease. So those were my choices. There are risks with everything, with every drive to work, and every time we go to the restroom we could blow a gasket....but it's easy for docs to try to talk us out of things where risks exists and rewards may or may not...
yet somehow, were they in our shoes, something tells me most would take the blue pill
and struggle against the evil matrix...and not just roll over because danger exists.
Thank you for all your posts. I am just too overwhelmed right now to even think but I am sure that I will try 72 weeks if my body holds out. I am having vision problems and the recent posts of people going 72 wks and not getting SVR worry me but I still know it is my best chance. Just did shot # 33 this morning. Three weeks to halfway! I am hanging in there.
I was diagnosed with >11.0 just out of curiousity which is considered too high or highest and which is considered low..???