Is there protocol/re-tx for someone who had viral breathru at 24 weeks of Pegasy

[willows]

Geno 1, taken off Pegasys at 24 weeks after viral breathru, went from 2 log drop at 12 weeks to BIG rise at 24 weeks.  Small town doc sending me to Hepatitis Clinic at U of W, am wondering what medical protocol is for next round of tx?  Biopsy in 2003 showed bridging fibrosis, 22 million viral load.  After stopping tx, ALT stayed low until year ago, now rising and have ribcage ache, BAD fatigue, etc.  Am going nuts wondering what protocol says is next, small town doc didn't want to do maintenance, says off label.  Depression under control, but WAY worried about Infergen, is it as tough as people say?  I had a hard time on Pegasys, lost 50 lbs and stopped eating, constantly sick to my stomach.  Now, ALT at 130 and thyroid T3 uptake is very low.  Any hints on what course the clinic may want me to take?  Long question, big problem, bad, bad virus.  Man, I am so sick of feeling bad.  Oh, and I am a gramma too.
Willows

[FlGuy]

my main man from the growing up days is in San Rafael. Oh, and he's a svr 3a.  Tells you something about our growing up days.

[GoofyDad]

San Rafael, huh? No kidding - did you know someone there?

Man, I'm killing off the flyer miles this year - now you see them now you don't :(

I'm feeling pretty OK confidence-wise. Maybe my confidence is misplaced, but for now it's holding up. My thought is that as long as I'm feeling good about it, I probably won't test till August, but if I start getting anxious, I'll probably go for it in June. Knowing me though - all this reasoning will fly out the window in June faster than a used trojan tossed from the backseat on prom night. Splattttt@!

[GoofyDad]

Well, I'm pretty much moving them daily now. Thanks for your interest.



<small>I'll do a VL first wk of June (12 wks) - or I may wait 'till August when I return from vacation</small>

[FlGuy]

I'm impressed that you have the patience to possibly wait until august.  I hope that if you wait that your vacation is not overshadowed by anxiety of a pcr.  At this point, the durability of the 4-week post pcr has to be a high percentage, 95+.

Congrats on your ongoing log dropping.

Many years ago, when my son was 6 and I had a boatload of frequent fly miles, he and I jumped on a plane and went off to San Rafael for a vacation.  Had a great time.  Enjoy your vacation when it get here.

[FlGuy]

When's the next one?

[GoofyDad]

I had that at wks 24 post tx. Got a VL at wk 4 that showed clear. By the time VL results came in, I was already feeling better. Big time stress, I know.

I was having some post tx bowel issues at the time. To be blunt, I think I was feeling big ol' backed up turds pressing on the liver.

Agree with FL, the VL test put me at peace. Wish now though that I had gotten it a little later -- so it would now carry more weight. Good luck.

[FlGuy]

Anyway you can move the pcr up a couple of weeks? Waiting makes you crazy.  Several folks get them as soon as a couple of weeks after.  Hopefully what you feel is an increased appetite.

[can-do-man]

consultation first, if he already knows your geno type and VL then usually sets an appt. for bx. then have you come back around 2 weeks after bx. Depending on the results of bx. Will tell if he wants more test. Its hurry up and wait. Then wait some more. Best to you

[FlGuy]

Somewhere after the bx the doc will give you an rx for the drugs.  At this point you may have some insurance hurdles to overcome before you actually get the meds. For me the riba wan't an issue, there was some hoop-jumping for the IFN and it eventually was overcome.  The IFN was covered by medical policy, not the perscription portion of coverage.  You might start asking a few questions of the insurance co, in advance.

[cgd914]

Didn't want to open another thread hopefully I will get some answers.  I have completed 48 weeks 2 weeks ago, however I have noticed minimal URQ pain the same as I was experiencing prior to treatment. Is this something that happens post treatment due to recovery?  I don't want to be paranoid but.....  Anyone experience this post treatment.  Of course I am sure you know what is going thru my mind right about now.

STATS

F 1b
biopsy 2/3
pre-tx vl 1 million
UND 12, 24, 36, and 48
I will be doing an 8week post tx pcr in June

[can-do-man]

Not post tx here, but sounds like youe having what just about everyone has post tx. No need to worry. And congrats

[Pdilly]

Don't want to open another thread but have a questioin.  After you have your Bx and your consultation on that how long is it before you can start tx.  Are there a gammit of more tests?

[Mister beagle bailey]

CONGRATULATIONS on finishing tx.  I have seen many post tx people complain about the same thing.  It will probably clear up after a few months, but your not alone.

BEAGLE

[jaroman]

I am sorry to hear about your viral load.
That happened to me too. The doc let me double the Pegasys, which I did for 6 weeks, and then got an undetectable PCR.  I am still on regular dose, at week 50, and awaiting PCR results drawn at 48.
If I am detectable, I will quit and wait for new drugs; but, I am handling Pegasys better than you are.  If I am undetectable, I go to 72 weeks.

[willows]

Good luck on PCR.  My doc never gave me option of doubling Pegasys, but the sides hit me pretty hard anyway.  Now I am going nuts, wondering what the new clinic I am going to will want me to try.  Is it appropriate to try Pegasys twice?  I could handle doing it again, sounds easier than Infergen.  Found a good shrink, he and I have plan to keep depression under control, so if I can keep eating, I could do Pegasys again.  Wonder if anyone has ever done Pegasys twice?  My admiration to you for your persistance!  I have found persistance myself now, I THINK, as my liver is getting worse.  More determined.  

Willows

[genedog]

i had viral break through last year week 40 of treatment did 55 i have to say i feel great now alt ast normal was high on tx dr wants me to get vl test to see why i feel so good now, must be the sunshine i guess

[michguy]

sorry guess I shoulda read first  what a talk befor you look moment

[michguy]

hey all saw my new doc today and am supposed to start a new treatment, anyone on something called pegasus along with interferon if so hows it working out, I go for ultrasound wed. endo in 2 weeks and trtmnt in about 1 month

[cuteus]

you could check clinicaltrials.gov

[NYgirl]

A lot of people seem to be having great success with Infergen.  In fact if anything happens and I lose my clear status that is what I will be looking to do.

I am so sorry for your problem.........It totally breaks my heart for you.  Hang in there and never give up...this tx world STINKS but perhaps your liver is in much better shape than it was before!  :)

[willows]

I have read about NM283 and am wondering how I could connect myself and the medication?  Perhaps just by asking the clinic I am going to, the U of Washington has big time Hepatitis and Liver clinic, but I am still scared tooooo death, not knowing what is on my horizon is the worst.  I will watch for those NM283 folks and their PCR's too.  Crossing my fingers.  Thanks

Willows

[cuteus]

It is heartbreaking to see a different outcome of a fellow 1a, using the same meds as I did.  Just like you, I was still detectable at wk 12, but I convinced my hepatologist to let me go longer since I was not having a horrible time with the tx, not easy, but doable. 72 wks worked for me, TG.
For some, using a different interferon the next time they treat does the trick or the same meds but longer time. The fact that you had a breakthrough, could mean that your hcv strain might not respond to interferon the way it is prescribed today.
You might want to check NM283 trials, they are accepting non responders and relapsers and some members are on it and having good results. We are waiting on a couple of them posting their post tx PCRs.