Need Advice on Tx course

[BostonGirl]

I know many of you have done tx 2, 3 times and have a lot of experience, so I trust your judgements. I really need some help here.

I recently had my 12 week PCR. I was previously 55,967,000 and dropped to 19,000. That is a great drop and I am pleased. ( I am 1A, so 48 weeks required )But now, all my doctor agree that 18 months, possibly longer GGGRRR> of tx will be required.

Now here's the part that is confusing. Early into the tx,like the 3rd week my PCR dropped to 303,000 which means 9 weeks later ( at the 12 week mark )I didn't really drop that much.

I e-mailed Dr. Cecil and asked for his advice. His opinion is that I need double doses of Peg or I should switch to daily infergen.

I am also having progression in my cryo. So, I will be seeing another specialist about possibly adding another drug to tx the cryo during the Peg treatmemts.

My questions to slow responders > would it be beneficial to do double doses of Peg at this point or switch to infergen? My doctors seem to think I should continue the current 180 per week and just extend the tx.

Also Dave, I know you did that additional drug for your cryo and I would like to know at what point into tx did you clear the HCV and cryo? were you also a late responder to the Peg? And do I need to be clear of HCV to start the rutuxin? The Hemo said she has mixed feelings on using this drug, but we will talk about it if I still have cryo at 6 months. meanwhile, I am getting a second opinion on the cryo and doing a lot of praying.

Thanks ahead of time for all your resposes. ((( Sue ))

[cbee]

Has anyone had experience with testing negative for cryo and then testing positive?  For years it was negative and then positive again which helped me decide to tx.  Now I'm at 19/24 and I test negative again.  The doctors don't have straight answers.  Does the cryo actually go away?  The doctors tell me once you are positive, you can have false negatives.  Anyone have some good insight into this?

-cbee

[willing]

to the best of my knowledge there is no such project underway. In the unlikely event I actually get the source data from the Reddy et al study I'll post the more detailed breakdown. The drug companies already have access to most of the available data : if you look at the disclosures statements for most of these studies (including the Reddy one) you'll see Roche or Schering as the funding source. The trouble is they don't provide access to what they have. Putting together a publicly accessible database is a huge job, which is why it makes sense to have them pay for it. You'd need lawyers to bless the medical-release forms that would enable the database to obtain your records and to ensure the right privacy-protection mechanisms were in place, nurses or equivalent to interpret the results and convert them from the various lab-specific formats to a uniform representation, statisticians  to determine the analytical models used for prediction and a gaggle of programmers to make it actually work.

The total predictive value of all this data is unknown, precisely because no one has looked. I've never seen a study that tried to assemble all SVR-related factors (the various host factors TN listed) plus  viral factors such as the ISDR sequence of the virus you're carrying, into a comprehensive model and assess its predictive power. It may well be that even though we don't yet understand the biological mechanism of tx success/failure we have identified enough of the asssociated factors to be able to predict outcome with some accuracy, This will never happen as long as we continue to throw away most of the information content of the available data - as in the crude VL cutoffs TN mentioned. The most likely abusers of such a database would not be the drug companies but insurance companies and government-funded health plans. If your predicted chances of success are low enough they probably wouldn't give you the chance to try.

[BostonGirl]

Yes, not only am I treatment niave, my BMI is 20, I am 44 and premenapausal, so still having plenty of estrogen, and I am fairly thin. My biopsy in 2002 showed stage 0/1 no fibrosis grade 2 inflammation. I have many factors in my favor.

My high vl and the cryo are definately not in my favor. But, I am going to continue tx and keep believing that this dragon will be gone.

The plan now is to have viral loads every 30 days, so we will know when I clear. Then, we will consult Dr. Ahmed from Stanford Liver center. He's been treating HCV for many years. He also is the Head of the transplant unit. I trust his judgements.

We will also consult my hemo and the rheumy when all the test results for cryo and vascultis come back. So, in about another 2-3 weeks I will know exactly where I stand. Thanks again for all your great links and posts. I do appreciate it.

((((((( Sue )))))))))

[cuteus]

I was going to bring up that national database issue.  I think it is a must, but I am afraid that if we allow the drug co. to obtain and handle that input, that some numbers might get manipulated...are you working on this project?

[Tallblonde]

TwoTells...Yes, cryo is indeed tricky.  The only reason I was even tested for it was because of the numbness/tingling.  But as you pointed out, that's also a very common HCV symptom without cryo.  It was initially hard for me to understand how it was possible that I don't have cryoglobulenemia when I test low-postive for the cryoglobulins.  But I have absolutely NONE of the symptoms except for the numbness/tingling, and even that has disappeared during the past month or so (thanks to some supplements I'm taking).

Ina...That's why I think you shouldn't necessarily conclude that you have cryo.  If your asymptomatic, then you're probably just part of the majority of HCV sufferers who carry a low level of cryoglobulins.

Susan

[twotells]

I have read the same thing that you mentioned, Susan, about many people having cryoglobulins in the blood.  I also have read that many people with cryoglobulins in the blood are not 'symptomatic' and therefore don't have 'cryoglobulinemia' or vasculitis.  The amount of cryo in the blood has alot to do with whether you are symptomatic or not.  My level was very high and dramatically worsened by the INF which is a rare phenomena.  I also developed a severe neuropathy documented by a neurologist.  In most people the cryo goes away when the virus clears but comes back when and if the virus comes back.  In one study Tn shared a while ago, I believe in 80% with cryo clear the cryo when they clear the virus and the other 20% don't.  What is also tricky is that some of the symptoms of cryoglobulinemia (symptomatic) like peripheral neuropathy and joint problems can occur in people who have HCV without cryo.  False negatives on the cryocrit are not unusual either, because these proteins can stick to the labware (precipitate out of the sample) when they cool even slightly.  The cryo thing is best handled by a Hematologist.
Take care,  Dave