Retreating after relapsing

[Dee1956]

Hello, I am a Geno Type 1 A,  Grade 2 Stage 4,  52 year old 140 lb female, started out with a viral load of 7M which had gone to 12M day I started treatment.  On 2/1/08 I started the triple combo treatment from Roche, R1626/Prodrug 1000mg twice a day Pegasys 180 iu reduced to 135 after a month and 1000mg Ribavarin daily. I was undetectable 8th week.on  Had to stop at week 43 of 48 (Nov 26 08) due to low lymphocytes which were caused by the R1626 Prodrug that was stopped at the 16th week.  My blood work on Jan 2nd showed that I relapsed and my viral count was already at 4M.  I am trying to find out how long I have to wait to retreat and wondering how to retreat.   I have read about retreating for longer or more aggressively and I wonder how much it hurt me that I was not able to take the 180 IU of the Pegasys.  I thought that since I was undetectable from week 8 on I had a good shot.  I would appreciate any advice or information
Thank you
Dee

[hrsepwrguy]

For a non responder chance of SVR is 30% for a partial responder or relapse it is 75 to 80%

[hrsepwrguy]

Yes there is a possible treatment for you. The new triple therapy treatment for genotype 1 patients who were non or partial responders on SOC. You have a 75 to 80% chance of SVR. The new drugs were just approved by FDA a couple of months ago so speak to your doctor. I hope this gives you some hope for the future and welcome to the forum.

Keith

[suzieq2]

I am 57 yr. female maintain good weight,nutrition, 1B nonresonder 2005 46 weeks trmt. should not have gone that long. iron overload, no blood letting pior trmt. slight bridging fibrosis,
labeled a slow responder, no such thing, I am still sick just about everyday for six yrs. now. I take low dose of morphine , xanax, and ambian, tried tree times post trmt. to live without meds. do not like taking them, My quality of life is less than good. I know there is no trmt. available for me at this time. I just want to feel better. I have severe fatigue, pain in back, Liver,
extreme pain in lower extremities. Butt thru to feet. sometimes unbearable.My original gastro,really dropped the ball on my trmt.but now i just want to be able to get up out of bed for a day. I do daily routine ,get up do one chore ,then lay down , get up some energy and yhis is the cycle.I take medical grade vitamin B complex, & D Alphalipodic acid , tried hormone replacement , made me sick , My General M.D. has treating side effects. and I am to the point of her saying I need pain management. I really do not want to go that route ,but we have tried everything, I am slowly becoming worse, quit work, Brain confusion, nausea, severe fatigue. sleep problems,weak, Just down right feel bad. I know there is no trmt. for me at this time.I am just searching for something to make feel better. Sincerely,Karyn

[HectorSF]

Dorene,

Please find a good doctor. They will help you to determine actually what is going on with your HCV and liver disease. There is a lot of misinformation in your last posting about HCV. The issue you need to deal with is your advanced liver disease which was caused by HCV. Cirrhosis of the liver is a serious potentially life threatening disease! You have advanced liver disease. Stage 4 of 4. You need to find a good hepatologist to help you treat your cirrhosis. But don't worry there are many of us living well with this disease and managing it. So it is not the end of the world as long as you learn to manage it with a doctor's help.

Also as someone with cirrhosis, your HCV treatment needs to take this into account. You are not the typical HCV patient like many people here on the forum. Cirrhotics have special needs. Only a hepatologist will understand this.

Thrombocytopenia Purpura and low platelet counts (Thrombocytopenia) due to cirrhosis are two entirely different things. Cirrhotic have low platelets due to their spleen enlarging (caused by fibrosis of the liver) "Bleeding under the skin covered 75% of my body". "A side affect of the body trying to fight the Hep C". This is not the case! It may be a symptom of your cirrhosis. You need to know. There are other symptoms of cirrhosis that you may not be aware of which is why you need a hepatologist.

What is your platelet count when not on treatment?
You didn't have a problem during HCV treatment with your platelet count being too low?
Has anyone suggested that you get screened for HCC (liver cancer) every 6 months or so?

Best of luck. Let us know what happens.
HectorSF

[desrt]

The first person I knew who was doing IFN tx was also stage 4 and had the bleeds under the skin. It took him 9 months to get response to SOC.
Your experience sorta confirms an idea I've had, that showing early undetected on triple therapy isn't always indicative of what's really going on. I agree that staying on full dose of IFN will probably be extremely important to your getting a sustained response. Also important is getting your insulin resistance under control. Are you on an insulin sensitizer?

[Dee1956]

Dear Hector, thank you so much for giving me the URL, I am trying to do as much research as I can, I thought I had done enough the first time however I am now learning about how insulin resistance can affect outcome and other interesting facts.
All
Also about a two years ago I had bleeding under the skin which I have now come to learn is a side affect of the body trying to fight the Hep C. I went to 3 doctors who told me not to worry about it.   I had a bad case from the knees down but the worst was 6 weeks after treatment stopped, it covered 75% of my body.  I think it is called Thrombocytopenia Purpura though I have found other names for it, vasculitis?  Also read that tendonitis can happen with Hep C as well as Diabetes which I was diagnosed with 3 months before the Hep C.  Hep C diagnosed due to low platelet level.  Thank you all again for your support, I am trying so hard to overcome the devastating news that I went through hell for a year for nothing and the fear I am going to die from this disease.  I am in worse shape now than I was before treatment.  Before I was diagnosed I felt better than I had in years.
Thank you again,
Dorene

[Dee1956]

Thank you for sharing with me, I am feeling a little lost right now we were so sure it was working.
Dee

[jmjm530]

for a good hepatologist in Virginia --

http://www.gastro.vcu.edu/faculty/shiffman/

As to the paper cited above -- same Dr. btw -- I do not think it pertains to those previously treated with PI's, although I could be wrong. in any event. You need a good clinician like Shiffman to help you with next steps

[Dee1956]

Thank you all so much for your advice, I am a little embarrased to say that I thought I was writing to the doctor, only after I hit submit did I realize my mistake so if you see similar posts from me, chalk it up to brain fog lol
The good part about making this mistake is that all of you responded, thank you so much.
FIGuy, you are right I need to get my ducks in a row and research and prepare for the next treatment.  The MIA Hep guy that I was seeing said I have to wait 6 months to retreat however that is a Roche rule
I live in Virginia and was wondering if anyone knows of a good, make that great hepatologist I might be able to see.
Thank you again for your answers, they are invaluable and I do appreciate
Dee

[HectorSF]

You responded to treatment and have a good chance (~66 %) of SRV when you retreat.
The following paper will tell you all you need to know.

"Understanding HCV Nonresponse and Identifying Candidates for Retreatment"
Source: New Management Strategies for HCV Nonresponders and Relapsers
By: Mitchell L. Shiffman, MD

http://www.clinicaloptions.com/Hepatitis/Treatment%20Updates/HCV%20Nonresponders/Module/Shiffman.aspx

Registration at clinicaloptions is required but free and easy to do.

Good luck.

HectorSF

[FlGuy]

There are some docs who believe that if you can get to UND (and you did so kinda quickly) that you can get to SVR.  The question is the receipe (meds and duration) that will get you there.  The more aggressive Hep docs will preclude dose reductions (your Peg reduction, for example) by being proactive by planning and quickly reacting with rescue drugs to deal with affects to both the Peg and riba.  The best thing is to find such a doc and work out a plan that can be evaluated while in process, with adjustments (meds, duration, rescue drugs) to get you to the endpoint still standing.

I also retreated and waited 9 months to do so.  I took that time to get all aspects of life and health together.  I knew my prime focus was to be treating and maybe toughing it out for a while.  Can't be half-assed about it.  The time that you wait to re-treat is based on your readiness and getting your poop in a group.