Recent Doctor's Visit After Relapse

[LSRL]

Hello all.  Saw the doc for the first time after relapsing and he advised monitoring labs every six months for now.  He did not recommend Infergen, said my fibrosis stage didn't warrent it (3/6 on Ishak) and I could probably wait for new drugs, if things don't change.  If things change, he'd put me on a maintenance dose of peg/riba because I responded so well initially.  I think he was as disappointed as me regarding the relapse!  I feel like I've been granted an uneasy reprieve.  What do my fellow heppers in the trenches think?

[Susie2007]

HI Guys. The HALT C Study has been looking at maintenance treatment for some of their patients. They have an arm in the study where they put patients who did not get to undetected on maintenance and compare them to patients who did not go to undetected and did nothing afterwards. They used 1/2 dose of Pegasys (and for PegIntron people, the dose is 1/3 ). There is no riba. The results will be presented at AASLD in November 2007. I was fortunate enough to speak with one of the lead investigators, Dr. M., Shiffman from Medical College of Virgina, just last week. He said the results were very disappointing. The only place where maintenance helped a tiny bit was those patients had a lesser incidence of varices. Now, I've been on 1/2 dose of Pegasys for many years as I am cirrhotic and I have never cleared although I get a 2 log drop. Dr. S said that unless the maintenance keeps your viral load under 100,000 you are definitely wasting your time. Even keeping it under 100,000 it still may be doubtful that it is helping but is worth a try.

What a bummer!

[Better-Angels]

Thank you for the kind words regarding Greg's SVR.

No, Greg was unable to work during tx on Infergen, and though it is a year out he is still unable to work full time, a constant struggle with fatigue. While we're obviously happy about the SVR, it has come at a very high cost.

I would only recommend that anyone retreating and considering an aggressive approach with daily Infergen be sure to consider the long term effects, both physical and mental. I have no doubt that Greg would choose the same path if he had to do it over again, but we both know now that this will never really be  behind us, we're convinced that some side-effects are going to be sticking around for years to come.

Good luck to you, and be as well as you can.
Debbe

[LSRL]

Thanks for your responses.
Rev, your description of maintenance therapy sounds exactly like what my doctor advised.  But I think he keeps his patients on riba.  Hope I misunderstood him, as I am NOT anxious to take it!!  I would think maintenance would be tougher to take than the usual tx.  With that, there is a beginning, an end and hope.  With the other, it's just....maintaining.
Debbe-was your husband able to work while taking Infergen?  I've heard it's a very nasty med to tolerate.  I hope he is doing well. I remember reading your comments on his relapse after a year and then becoming a well-deserved SVR after the Infergen.
Jim-not knowing if or how or when things may change is what makes it a difficult situation and a challenge to make decisions about treating again.  Any idea on when the new meds will be on the market?  My doc said it won't be for another 3 years, but I'm hoping it will be sooner, for everyone who needs them.  It's great to be able to share thoughts with those who understand.
Thanks again, and enjoy the rest of the weekend!

[Jeffyboy]

from what I have seen and heard I know there is but one absolute and that is there are no absolutes. Perhaps chanjging diet  and life style could help. I know I have changed my diet and began a daily suppliment regimin and since then the sx have been more tolerable, and I have not had to take anything harder than Tylenol to get me through the weekend. I have even taken up exercise. My appitite is back and geered toward whole foods, fruits nuts veggis whole grains, fish. the first month I was on the diet I ate fast food and it made me irratable angry and sick to my tummy. I am currently on week 35 and the rescue meds are collecting dust on the store house shelf. Beware of Government prosessed cheese, LOL...... Still there are many diets out there and what could be the worse that could happen, "You feel better."  Well I hope you talk it over with your doc and you and he can come up with an answer, and Remember the Fat lady can sing all she wants to but it aint over until God say's it's over.
Jeffy

[jmjm530]

I agree with your doctor, although if "things change" I'd clearly weigh the options at that time, including but not limited to maintenance.

-- Jim

[Better-Angels]

My husband, Greg, was a relapser too. He took Infergen second time around, very tough on him. My understanding of maintenance is lower dose of Interferon only, no riba.I could be wrong.

Regardless, good luck in whatever choice you make.

Debbe

[Proactive]

As far as maintenance therapy, I might have been dreaming, but I thought my hep docs np told me that maintenance therapy didn't include riba, just peg?
http://www.natap.org/2005/EASL/easl_15.htm