Stage3/4 fibirosis and triple therapy

[gerard11]

I am post livervtransplant 5-23-10. Have been great. My sister was my living donor . My first annual post check up showed marked fibirosis 1/2. Insurance company turned me down for thriple therapy. Very frustrating to say the least . FDA not post transplant approved. I had changed my meds and the hospital and myself were shocked when they turned it down. We tried appeal after appeal and we turned down every time. Fast forward to May 2012. Annual check up biospy shows marked fibirosis stage'3/4. Now I am really freaking out. Way to much energy, time, money, living donor gift ect to let this liver go downhill with a drug that can save it. Appeal to insurance co.again turned down. Thank goodness after many tries the insurance approved treatment!!!!! I start 5-31-12. I have been reading everything I can find about post tranx and thriple therapy . This site is by far the best I have found. The quality of the posts are outstanding. A few of you who post have really done your homework. Many questions. The one ? I will ask my Docs on the 31st is, what exactly is stage 3/4 fibrosis? I know fibrosis is somewhat subjective. What exactly does this number mean, and how will it effect this triple therapy (telipivar)? If treatment is a success can the liver reverse fibrosis ?if anyone has had these discussions with the medical professionals , and could pass them along, that would be great.   Many questions to come, some have been answered here by all who post. Thank you posters for the time you take to help others. This is a insidious diease that requires strength, faith, family, and a support team of medical professionals to get us through. Thank you all for your posting!

[gerard11]

Thank you. That sounds really good to be taking ribrviron early in the day. Have been taking at 8pm. I also noticed a steroid type effect ( everything hurts less) with ribavirin. Has anyone else noticed this? I found this very odd. Thank you all as always!

[orphanedhawk]

I did my labs weekly, two days prior to my shot day until my blood work finally stabilized.
It sounds like your doctor is keeping a close eye on you, a good thing.
One comment about ribavirin~ it made it hard for me to get to sleep.
My hepatologist said it was fine to take my later dose earlier in the day.
I landed up taking them 5 hours apart, which because of it's long half life, is not problematic.
Don't forget to drink lots and lots of water.

OH

[gerard11]

First day , first shot of interferon was cut in half. Ribrviron was reduced to two twice a day (200 mg) instead of 3.. I am sure this is a easing in period. I get my labs done every Wednesdayvas long as I do my interferon shot on Friday. That gives the docs Thursday to adjust as needed. Felt ok the next day after my first shot until 5 pm the next day. Then the chills and achy flu symptoms hit me hard. Sunday I stayed in bed all day. The ribrviron gets me wired. Thank you all posters!!!!!!!

[Idyllic]

5/31/12? That is tomorrow, right? Thursday? Hey I hope you keep in touch and post to let us know how you are doing. Hope your first day goes smooth and easy♫

[gerard11]

Thank you OH. I start treatment 5-31-12. Meet with Docs with meds tomorrow. I have a lot of questions to ask. I will post and want to thank you all for your help.....

[orphanedhawk]

There was a woman who posted here a few months ago. Her husband was doing the triple tx post tp, was on cyclosporin and doing great.

I agree about the squeaky wheel idea. Make a fuss when you must, be the drama queen. It's worked for me, more than once.

Although I can't add anything that mike and Hector haven't already covered, as  someone who also had a live related donor transplant  ( my daughter) and just successfully completed SOC, geno 2, I want to wish you the very best of luck.

OH

[HectorSF]

Thanks for the article Mike!

Hector

[gerard11]

Thank you !

[gerard11]

Thank you Hector, My sister is doing great. She too just had her annual check up, and is fine. Thank you for asking. Geno type 1a. I did treated my hep c prior to transplant. I was diagnosed in early mid 1990's. I did interfreon for 6 months cleared virus and it  came back. I did 12 months interf cleared came back, 18 months interf and rib and virus returned. Cleared virus every treatment except in the middle of a 3 year ago treatment stopped when ESLD was present. Have done so well post tranx. Besides a few stress fractures in my leg, it has been the gift of gifts. So bummed out to find out this liver is being attacked so hard by Hep c. I hope you are coping well waiting on your new liver. It truly keep me going, knowing a transplant was coming. I literally felt that nothing could keep me from getting this tranx. and my getting my life back. I knew the new drugs were in the pipeline,and was positive they would be available to me in time, to arrest this hep c assault . My timing is close. After fighting with insurance ( and I have great ins) and not getting these a year ago at  stage 1/2 fibirosis I feel like I lost those battles but still trying to win the war( clearing hep c). Hector thank you for responding. I can tellnyoubhave done your homework. I thinknyoubalreadybknow this but I will mention it anyway, the squikey wheel gets the attention !!!! Be your own advocate. The Docs and the health care professionals are great but be your advocate. Thanks again and hope your tranx. Is a full success.

[mikesimon]

You might want to take a look at the following article from Clinical Care Options. You must register to view but it's free and easy to register and well worth the time and effort.

The title of the article is:

Boceprevir or Telaprevir in Combination With PegIFN/RBV Improved On-Treatment Virologic Response Rates in Patients With Severe Genotype 1 Hepatitis C Recurrence Following Liver Transplantation vs Historical Treatment With PegIFN/RBV
Posting Date: April 24, 2012

See: http://tinyurl.com/c49g346

Good luck,
Mike

[HectorSF]

Hi. Congratulations on your transplant. Your sister I trust is doing well?

I have a few questions that will tell me more about you and your hepatitis C and liver disease history.

What genotype are you?
Did you treat your hepatitis C prior to your transplant?
If so, what happened that it wasn't successful? Did the virus come back after treatment? Did you have to stop treatment?
Thanks.

Stage 3/4 means you are approaching cirrhosis again. Stage 4 is cirrhosis. So you have developed cirrhosis in only 2 years. Hepatitis C is a relentless virus that we have to get rid of sooner or later. Unfortunately it is especially difficult for persons with extensive liver disease to do. What is happening to you  is what can happen to transplant recipients who are still infected when they receive their donor liver. It is good your transplant center is treating you very soon as treatment is less effective the more your liver becomes damaged from now on.

Yes, if the treatment is successful, it may be possible to to save your current graph. Each person is different so you really need to talk to your doctor at the transplant center who knows all about your health.

Triple hepatitis C therapy is totally experimental at this point there are no studies indicating its effectiveness. It will interact with at least one of your current meds so they will switch or change the dosage of the immunosuppressant.

There are no papers on the use of treatment with triple therapy and post transplant patients that I know of. Only select patients are being treated with triple treatment. Most are still treating with peg-interferon and ribavirin as it the standard practice for post transplant patients.

Remember your hepatologist and surgeon are the only real source of information about you. Each of us is different in how diseases effect us. So everything important must be tailored to each individual. Generalities are just that. You don't want to risk a life changing decision of anything but your own history and present condition which only your doctors know.

The best paper I know on this subject is written by my hepatologist. It is an old article but the basic practice is still that same as her article in Hepatology Magazine. She is one of the leading international experts in hepatitis and liver transplantation. I also have hepatitis C and hope to receive a transplant in 6-9 months. My doctor will be treating me with triple therapy while having my transplant and if that fails after my transplant like you.

If you have an other particular questions feel free to ask. I have to go to my transplant  center now but I will be back on line later.

Take care.

Hector

[pooh55811]

There are several people on the forum who can answer some of your questions. However, if I am not mistaken, I believe Hector is the person most knowledgeable about liver transplants and treating in a transplant situation. Hopefully he will see your post and respond.

I wish you the very best in the future.