disappointing 4 week VL test - questions

[smaug48]

Heard my 4 week viral load test results - 193,000 IU. My pre-tx vl was 718,581 IU, so not even a one log drop.  A huge disappointment....

So what does this mean in terms of my chances of eventually getting SVR? (I'm 1a, stage 3, grade 2, see my profile for more info).  

The nurse practitioner said the plan is to stay the course and get another vl test at week 8.  Is it too early to consider boosting the riba?  I'm taking 1000mg now, weight based.  My hemoglobin has slid from 14.1 pre-tx to 12.1 as of 1/31, don't have later test results yet.  I'm reluctant to boost just to boost if there's no proof it will do good.  I'm a full-time student in a rigorous MBA program and don't want to feel any worse than I do now, but of course my health is numero uno.

Thanks for any input.

smaug

[sfbaygirl]

Good,  I rant and rave and go on now that I have been through the whole tx thing. I want everyone to SVR!   You are smart and check things out and I have great hope for you!  You know the thing is about 1a's is that 50% of us are not gonna make it! As relapsers we have less of a chance, I guess that is why I am so gung ho on going the distance of first time treaters!

All my best and more,
Linda

[smaug48]

wyntre9:
Thanks for sharing your experience.  Discussing dosing with the doc is sound advice, I'm going to do that.

I'm crossing my fingers for your SVR
-----
sfbaygirl:
Having to deal with this stupid disease would drive anyone to rant about not enough being done to help people who have it.  I truly appreciate the support and good wishes, thanks.

Be well

smaug  

[sfbaygirl]

HR is a physican. He can't recommend anything that is not FDA approved. If you notice he is careful about this. Kalio added oxymatrine and got SVR. Not saying it is the be all end all, but I certainly would consider it. It sure can't hurt!  I also would follow those anti fibrotics as Gauf lists and throw in some Alina. You know I relapsed, which wasn't a big surpise as I had to stop. but going on again, I sure would do some digging into what else you can add to that SOC. Eventually, we will have a cocktail lke HIV that is a mixture of things to help HCV, I believe. But if it were me on tx again, I would read every one of HR's 283 posts and take into consideration the things he says. I rememeber talking to him about Alina over a year ago and how to get in from over the border....funny. Now the AASLD conference  was amazed about Alina the the Egypt study. Can you believe 91% of those on it SVR'ed?  That's pretty amazing and apparently many Dr's thought so too, after watching this conference. Those Dr's that are good and are willing to stick their necks out will prescribe this and other drugs that may help us.   I just wish there were more of these dr's.  Anyway...I am ranting.   Just get well guy, and there is hope for us all...with the right DR's.  

[wyntre9]

You still have time to reach UND so don't be too discouraged.  You are not a rapid responder but you could very well be an early responder by week 12.

Good idea to discuss dosing with your Dr.  In retrospect, I wish I had understood enough about what the lab numbers and VL meant to have asked for a riba increase.  I didn't get UND until week 17 and I'm on week 61 of the 72 week tx.  i sometimes wonder if i had upped the riba at week 4 if i would have been UND by week 12.  But it's not easy, especially with dropping HgB.

Good luck,
wyntre

the

[smaug48]

Many thanks for your input.  I know I'm not out of the running for SVR, but it's good to hear someone else say it!  BTW, congrats on your fibroscan results - that's gotta make you feel good!

I hadn't heard of oxymatrine - I did some reading of prior threads and am not quite sure what to make of it.  A post from HR said "The info available for oxymatrine does not indicate that it could hinder/be harmful to the success rate of SOC" (http://www.medhelp.org/forums/hepatitis/messages/44795.html)
but he didn't include it in his recommended multi-prong cocktail (see Gauf's journal entry in his profile).  He also recommended doing thorough research in a medical library and presenting it to the doctor for consideration - I'm so pressed by school right now I just can't take the time to do that...

CS posted a link to a Chinese study
http://www.wanfangdata.com.cn/qikan/periodical.articles/zgzxyjh-e/zgzx99/zgzx9901/990107.htm

If you have any other info references on oxymatrine, especially anything that discusses taking them with SOC, please pass them on, thanks!!!

[sfbaygirl]

Alina would be great to throw in. You certainly are not out of the running as far as SVR. The 4 week is a great measure and you did have a drop in VL, not as much as you would have liked. Have you thought about possibly upping the interferon, perhaps a half dose mid week?  Of course most Dr's aren't going to want you do this.  Oxymatrine is also good to add to SOC.  Hope you get that Alina!  

[smaug48]

Thanks for the feedback.  Jim, thanks for posting that thread link, I hadn't seen it.  I'm thinking about starting Alinia (or Daxon if I can't get a script) now but not increase the riba and see what happens at week 8.  But I will talk with the NP and doc first.

[jmjm530]

If you haven't read it already, differeing points of view were covered in this recent thread here:http://www.medhelp.org/posts/show/425847

But if you do want to increase your riba, you might discuss adding Procrit (epo) at the same time, given your two-point hgb drop and what appears to be some symptons of anemia already.

The potential rewards of adding more riba are hopefully a faster viral decline, but the risks run from more fatigue (anemia) to a forced discontinuance of riba , esp if you don't start the Procrit at the same time of the riba increase.

If you had less of a hemoglobin decline, I'd definitely say go for it, but you did drop two points, which is a reasonable drop for four weeks on the drugs.  That said, hgb drop is still a crude barometer of serum riba levels but unfortunately all we have in this country. A difficult decision as many of them are.

-- Jim

[Trish77]

IF I were you ... I would boost the Riba to 1200mg and I would add Alinia to the mix if you can get it.  My perspective is that as long as you can tolerate it, why not do it.  There is no proof it will NOT do good.  And there are those of us who think there is reason to think it will do some good.   As long as you can tolerate it, why not do it.  You are Stage 3, Grade 2...not SO far along but I would give this as good of a kick as you can while you are in it.  The earlier the better.

There are others with much more experience than me who will likely weigh in...that is my own take on it.

I wish you good luck.  

Trish