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 ))

[Tallblonde]

I commented on this earlier on this thread.  According to my doctor (and confirmed by research I've found), over 75 percent of people with HCV test positive for cryoglobulins.  I'm one of those people, but both of my GI have emphatically told me, over and over again, that I do not have cryoglobulenemia.

Cryoglobulins in the blood flucuate like a viral load.  Sometimes they're higher than other times.  When I have more time, I'll try to locate and post the information about 75% of HCV patients having cryoglobulins in their bloodstream.  

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

[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

[TnHepGuy_]

Can you send me an e-mail? I have a paper/study that you might find of interest.

TnHepGuy

[BostonGirl]

Hello Ina;
           You have brought up some very interesting remarks on tx and on cryo. I too, have read about 40% of HCV people test positive for cryo. You are right, most docs do not test for it. So, there could possibly be many undiagnosed cases out there.

As far as testing positive for cryoglobins and not actually having cryoglobulemia > well, here's my take on it for what it's worth. I think the cryoglobins floating around in the blood stream, may in fact just do nothing for many years ( Just like the Hep C virus ) People are infected, but have no symptoms for many years.

Then, just like the ugly old dragon > for one reason or another the immune system goes whacky and the cryos begin attacking nerves, kidneys & blood vessels. It's at this point, I believe it developes into full blown cryoglobulemia.

( this is just my personal opinion ) I have no data to back it up. Just my thoughts. ((((((( Sue )))))))


  

[Tallblonde]

But if 40% of HCV patients test postive for cyroglobulins, wouldn't you expect many more cases of full-blown cryoglobulenemia?

To my knowledge, you and TwoTells are the only regular posters on this forum who have full-blown cryoglobulenemia.  I would think there would be a lot more than that if your theory was correct.

Susan