Stopping HCV meds or not?

[mauka]

I finally got my lab done (taken at about 20 weeks) and the viral load (hep c type 1) is still 7 million!

The doc is saying I should stop the meds because clearly ain't helping me at all since the viral load is so high end the enzymes as well.

I take peg interferon and rebatol...should I keep on taking them?
Scherin's is saying that the goal IT IS NOT to clear at 12 weeks and once cleared keep on taking them for 36 more....they saying the whole cycle should be 48 weeks period...

I'm very confused now..since the doctor I went to is a new one due to   hurricane Katrina I had to change.

Thanks.

[friole]

What a dilemma.  Seems like most of the tests are run through labCorp or Quest.  LabCorp's PCR tests are all run at a lab in California. Probably quest also has a similar genetic testing lab.  Perhaps you or your doctor can contact the labs directly (just contact both of them) and they can trace down your results.  It would not just be in the New Orlean office

A quick google search shows no LabCorp offices in New Orleans, but several Quest.  Here is a websight you might be able to post a question on.
http://www.questdiagnostics.com/common/contactus/contact_index.html

Mauka, you would have had a 700 million beginning PCR for 7 million to be a 2 log drop. I don't think there are even any tests to test that high, so chances are, you haven't had that drop. Sorry

Kathy

[mauka]

The bad thing is that all my records due to Katrina are lost.
I just read on thebody.com that the goal of theraphy is a 2 logs
reduction in the Viral Load in 12 weeks and my new doctor does not
have any  previous lab to compare to...all he knows is that my VL now, after 2
weeks of TX  is 7 millions but have no way of telling how much it was before treatment.

Do I make sense?
Thanks so much for your help.

[NYgirl]

Wow I missed the stage 4.

I would say they are right you need to continue BUT you need to be doing something that is WORKING as well.  Treating just for the sake of treating makes no sense - you need RESULTS.  That is the point of treatment.

I hope you find a great doctor who can help you out here.  We'll all be here in the meantime ;-)

[friole]

You are saying that you never had a viral load test done prior to treatment? I would definitely get another VL test done in 2 weeks like the doc said.  It sounds like you do need to switch meds and or increase the dosage.  If your current doctor is not willing to do this, are there some other options there?  As Jim said, with stage 4 cirrhosis it would be best to continue with treatment.  My very best to you
friole

[NYgirl]

My doc said if I wasn't responding we'd stop at 24 weeks.

If my numbers were not improving I would definitely not just continue on for no reason - I would stay proactive find another doctor (mine says no other treatment if I do not respond, no changing meds or dosages) and then start again on something that might work.  Daily shot whatever.  Something that might kick start killing off the cooties.

Of course I dont know your original number v/l but 7mil seems very very high still.

But that is just me.

BEST of luck no matter WHAT you decide.  We all need to beat this thing!

[jmjm530]

If you're stage 4 and tolerating treatment *relatively* well, I concur that you should keep going with a different drug mix.

From what I've read, daily Infergen would be my first choice. But if you go this route, or any route, treat with a doctor who has been there--done that, and request frequent (monthly in the beginning) PCR's just to make sure you're not wasting your time and body.

As far as taking riba with some fat, why not try it. I do. Can't hurt. And speaking of riba, by now you should have a track record of how you handled your current dose. Consider increasing it if you can tolerate and build Procrit into your tolerance curve. All the best and let us know how things progress.

Not to confuse the issue, but my other "first choice" would be to check out all the Vertex trials and inquire how soon they will be taking people who are re-treating. If a good trial you qualify for opens up soon, it should be a consideration.

-- Jim

[mauka]

Thanks I appreciate your comments and help!

[cuteus]

I am now home and will post to you what dr cecil suggested to me, see if you can find a dr that will work with you and is ready to flex the rules
"Dr. Cecil's suggestion to me:
"Ask the docs if they will try 270 mcg of Pegasys per week for a couple of months, or 210 mcg of PegIntron per week for a couple of months or 15 mcg of Infergen every day for a couple of months.
Instead of stopping or doing something that is not working very well it makes sense to change the treatment. Good luck to you. Ben Cecil, MD"
Ask your doctor to try you on Infergen 15 mcg daily plus ribavirin. It is working on 20-25% of my Pegasys nonresponders.
Ben Cecil, MD
Mauka, you got to change the protocol asap, if you want to see anything changed.

best to you

[jmjm530]

If you're stage 4 and tolerating treatment *relatively* well, I concur that you should keep going with a different drug mix.

From what I've read, daily Infergen would be my first choice. But if you go this route, or any route, treat with a doctor who has been there--done that, and request frequent (monthly in the beginning) PCR's just to make sure you're not wasting your time and body.

As far as taking riba with some fat, why not try it. I do. Can't hurt. And speaking of riba, by now you should have a track record of how you handled your current dose. Consider increasing it if you can tolerate and build Procrit into your tolerance curve. All the best and let us know how things progress.

Not to confuse the issue, but my other "first choice" would be to check out all the Vertex trials and inquire how soon they will be taking people who are re-treating. If a good trial you qualify for opens up soon, it should be a consideration.

-- Jim

[mauka]

This is my only lab, correct.

I have been able to take all your meds on time,
but the only thing I didn't do is take rebatol with fatty food, according to new studies that can increase the percentage of med in your body up to 70%!
I'm not sure if that could have made a difference.

I have no idea what my VL was before the meds due to Katrina... I do know that
I have stage 4 cirrhosis.

I forgot to mention that this new doctor I saw today sounded like I should stop taking them meds right now, BUT if I really wanted I could do it for 2 more weeks and do a lab again to see if the VL got any lower lower otherwise stop...2 WEEKS?

I may do that I guess taking rebatol with fatty food and I'll see I guess.

[cuteus]

I would be one to encourage you to continue if I was to see a good response. Your vl is still quite high so long into tx. You are not responding to the current protocol and meds, consider changing something to encourage the lowering of your vl. Dr Cecil recommended to me to increase my interferon or switching to another for a few months to see if a change is seen. If no change, I don't know, he did not go that far with me. Go to his site and get his opinion. No sense in continuing your current protocol. It does not seem to be working for your strains.

[jmjm530]

It will be hard for anyone to advise you without knowing your full personal and treatment stats including: pre-tx numbers, fibrosis stage, week 12 PCR, age, treatment drugs and doses; plus any negative predictive factors such as reductions in peg or riba, iron in biopsy, fatty liver, overweight, Afro American? Male?

That said, with a 7 million load at week 20, you obviously aren't responding to your current treatment regimen and should be considering other options including stopping treatment, changing drugs/doses and or extending tx. You should also be looking for a second professional opinion as you are at a very important juncture.

-- Jim

[friole]

I am so sorry your VL is still so high.  What was your starting VL.
Also, since you were a Katrina evacuee, have you been able to take all your meds on time?  I am glad you finally have found another doctor, by the way and were able to get the lab.  This is your only one, right?

friole

[sailinlady]

I'm far from being an expert but I know my GI had told me all along that if my viral load was not way down by 12 wks the tx was not working and he would stop it.  With me fortunately, that was not the case.  Still waiting for my husband's 12 wk.  I would check with other doctors and get as much information as possible.  Good luck!