See my other post for more resources for someone like yourself with recurrent hep C post liver transplant.
As far as the ribavirin and its side effects...what you are experiencing unfortunately not uncommon for us transplant patients. Ribavirin causes a drop in red blood cell count. For us post transplant folks it is not uncommon for us to not have normal level of RBCs and hemoglobin to begin with due to our immunosuppression meds. When we start the treatment it isn't surprising that we developed the symptoms of low RBC count or actually become anemic. <10 g/dL of Hgb. Are you anemic? Has your hepatologist offered Procrit or transfusion to raise you blood counts?
The ribavirin was added to the treatment to give you a better chance of being cured due to you having genotype 1a with the Q80 mutation. Olysio is less effective against this form of the virus so the ribavirin is added to make up for the less effective than normal Olysio. I will be also treating with the ribavirin because even though I am 1b I am a "hard to treat" person having failed 48 weeks of Sovaldi + ribavirin as well as being a null-responder to peg-interferon and ribavirin.
Please realize that when a person becomes undetectable on this treatment has no correlation to your chances of SRV/cure. All people become undetectable and stay undetectable while treating with this treatment. People only fail this treatment by relapsing after they stop treating. They relapse. The virus comes back with the resulting viral load. Usually within the first month after stopping treatment.
Hang in there. Hopefully this will put an end to your recurrent hep C and your liver disease in your donor liver.
If you have any other questions just let me know.
I am going to our transplant center now to visit a friend who just had his post transplant hernia surgery last Thursday...
Thank you Hector for both of your replies! It is good of you to visit your post transplant friend today at UCSF. It means a lot to those of us going through these epic health crisis. And, I am very happy to hear that you are still progressing towards a cure.
I hope you can shed some light on a few more nagging questions.
I, unfortunately, have had to be my own Doc these past years, living somewhat isolated in Southern Oregon. OHSU denied me listing 4 years ago and in a 'hail mary' I moved to Tennessee where I was emergency transplanted at Methodist Hospital in Memphis; I literally arrived there in a hepatic coma, they not knowing me from Adam, thank God they took care of me.
Returning to OHSU months later, post transplant, they treated me as an 'Orphan' patient and have never done much in the way of following me. I reached out to Dr. Terrault who was kind enough to consult with me that lead to me local G.I. and insurance being able to treat me for recurrent HepC. As mentioned, I am now in the middle of that treatment.
So, do you know anything about time of day for taking meds? Currently, I take the anti-rejection meds mid morning, an hour later the ribavirin. At 6 in the evening I take the sovaldi & olysio. at 10 in the evening the rejection meds again, and at 11 the ribavirin again. No one has suggested when to take these meds. It seems somehow counter intuitive to be taking ribavirin to ramp up the immune system while taking the immune suppressants to quiet it. It is a roller coaster ride. I feel heavily medication throughout the day and night. Any suggestions?
I do not understand the half life of the virus and how it is eliminated. Is it dormant in the liver cells while in the blood it is non-detectable, and if so, how can the meds work on a dormant virus that is not replicating?
How did they come up with 12 weeks? Why not 10 or 8 or 14? there must be some study showing the lifespan of a virus?
I am/was an architect/builder so I see the world from a structural point of view. I can imagine the matrix structure of the liver along with the accompanying hepatic liver cells. Buildings fall down when their foundations are undermined - so, this 'corrosive' viral element must have some sort of lifespan? This probably sounds a bit vague but a better understanding of these processes will greatly help me to cope and sustain myself through this miserable period of treatment.
Hooray to Methodist Hospital in Memphis!!! That is great to hear. People do care. Without our transplant folks neither of us would be here today.
You could have come to us we have had folks for your state here but the wait here is the longest in the country so hanging on to dear life is key. People with type O blood typically need a MELD score of 33-34 to get a transplant. I got mine with a MELD score of 36 with my HCC exception points.
Good question! The best time to take our meds when taking our immunosuppression drugs as well as our 3 drug cocktail of Sovaldi, Olysio and riba? Hummm I never thought about it. I will be at the transplant center tomorrow for our support group meeting and try to take to one of my folks who works for Dr. Terrault and treats all of our post transplant folks. So hold on the answer is coming as I will need to know the optimum time when I start in 17 days....but who's counting.
Ideally or tacrolimus, cellcept or whatever you take should be taken 12 hours apart to maintain consistent tough levels for our immunosuppression. I take my post transplant meds at 9:30 am and 9:30 pm.
I see you are taking your ribavirin at 11 pm. You don't have insomnia? Some people like myself can't sleep if we can't take ribavirin in the evening so we take it earlier in the day which is fine with ribavirin as it has a pretty consistent blood level throughout the day unlike our immunosuppressant drugs.
"I do not understand the half life of the virus and how it is eliminated. Is it dormant in the liver cells while in the blood it is non-detectable, and if so, how can the meds work on a dormant virus that is not replicating?
How did they come up with 12 weeks? Why not 10 or 8 or 14? there must be some study showing the lifespan of a virus? "
Hummm if I understand you correctly you are asking about the virus and its replication process first...
Each HCV virion only lives about 8 hours so it had to be constantly replicating to stay alive. Typically the virus replicates about a trillion times a day in our liver. Unfortunately as it replicates it damages the liver cells in the process and over time causes collagen buildup in our liver cells resulting in fibrosis. What the new drugs like Sovaldi do is interrupt the replication cycle of the virus. Since each virion lives less than a day the virus can't replicates and dies. This is why we see the viral load goes down until it is undetectable so rapidly with Sovaldi treatments. Instead of boosting the immune system like peg-interferon and ribavirin did to attacked the virus a drug like Sovaldi can directly attack the virus and its life cycles. That is why drugs like Sovaldi are called Direct Acting Antivirals.
"How did they come up with 12 weeks? Why not 10 or 8 or 14? there must be some study showing the lifespan of a virus? "
Treatment duration is not based on the virus life cycle but on early trial data showing the most effective duration to achieve SVR. As you may recall interferon based treatments were either 24 or 48 weeks. When they first started studying Sovaldi (then called GS-7977) in clinical trials they did treat people like myself who were in the early trials for 24 or 48 weeks. They soon realized that most people could be cured with a duration of only 12 weeks and that treating longer provided little benefit as far as SVR is concerned. Of course for harder to treat folks like genotype 3s, and people with aggressive recurrent hep C after transplant that treating longer was optimum for these folks. And now Gilead is studying treating genotype 1 naive patients for only 8 weeks. So duration is optimised for particular subgroups of patients.
Got to sign off for now as tomorrow my friend will be discharged and I am also meeting a post transplant friend from Hawaii who is having her yearly clinic appointment tomorrow as will. Sorry for any typos but it has been a long day.
I am 14 years post transplant, geno 1, and doing the 24 week Sovaldi and Riba. Three riba at breakfast and two Riba twelve hours later. The brain fog hits me pretty hard most days, starting about 30 minutes after the Riba and lasting about four or five hours. I try to keep moving around (errands, thrift shops, library, etc) after taking the Riba to keep things moving through my system; then take an hour nap and feel pretty good the rest of the day; no more brain fog after that the rest of the day, just tired. I did riba and interferon in 2006-7 for 72 weeks and the current treatment is a walk in the park compared to that.
I can see you having an excellent chance to clear on the current sovaldi and olysio with riba. 12 weeks is not long at all, and you are probably getting the best combo of drugs available now. Riba *****, but only taking it for 12 weeks, your body and mind should recover pretty quickly after treatment.
I think you are in a very good position right now, considering all you have been through!
I started the Solvoldi/Olysio combo at 6 months post transplant. I am now 7 months post transplant and my viral load is down to non detectable. (1a)
I am NOT taking Riba..
They are trying to decide whether to keep me on for 12 weeks.. or to go an extra 4 weeks to 16.
I would not take Riba again, and my transplant and hep team agree especially after my experience with the Incivek triple therapy which almost killed me..
may I ask why don't you take the Sovaldi/Olyiso combo? Are you Q80K?
I don't know why. I don't think I have ever been tested for Q80k. I was lucky to get approved for the Sovaldi/Riba in April. I had just been turned down for any kind of treatment by my transplant center in January.
Yes, I am insomniac, so I will move my riba to earlier in the evening and morning - thanks for the tip.
I get my meds from Briova, a mail order house out of Nevada; their pharmacist told me that blood levels are pretty much the same throughout the day as long as one is consistent with med times. We know that is not the case with the immune sup and riba from experience.
This is my problem - no access to helpful info. My local GI who is prescribing is a newbie to these meds. Even this huge western states pharm house only has a few immune suppressed patients taking the new triple cocktail . My Post Trans state hospital defers questions to my local GI...and so it goes.
Yes, I am anemic, more so each week. My hemoglobin is now at 9. I want them to intervene before I drop any more but 'industry standards' say 7 or below. I'm not excited about transfusions or the hemoglobin booster shot, I've had more than my share of blood - I still feel rather Vampiric during the day...But if super athletes use transfusions I am willing too; being a couch potato is not my style. Why must we always have to fall to some baseline before there is intervention?
Do you know if any biopsies are done during the treatment? One post said that they are being 'evaluated' as to whether to add an additional 4 weeks to their treatment. Is this evaluation done by biopsy? Assuming one has cleared the viral load in blood test how else might they make such a decision?
I am a fount of frustrated questions. You guys are so lucky to have a weekly meeting place and a doctor staff so available!
Thanks for your insights into my rambling questions. I do appreciate your time.
"Yes, I am anemic, more so each week. My hemoglobin is now at 9. I want them to intervene before I drop any more but 'industry standards' say 7 or below. "
My husband is post transplant (2 years) with cirrhosis again due to recurrent Hep C and bile duct damage. He completed 24 weeks on Sovaldi/Ribavirin two weeks ago. Since he has symptoms of decompensation (portal hypertension and bouts of HE), he was not eligible for Olysio. Before he started treatment he was given shots of Procrit to boost his hgb to 10 or above which is the protocol for this treatment. Unfortunately, the procrit triggered bouts of HE which lasted 3-4 days at a time. After 10 weeks of this,
I convinced his doctor to let him continue treatment with his hgb in the 8's and should it drop under that, give him a blood transfusion instead. for the remaining 14 weeks of his treatment his hgb remained in the 8's and lower 9's most of the time. He was given a total of 3 blood transfusions when his hgb dropped into the 7's.
I am surprised that you wrote "industry standards" say 7 or below . Based on my husband's treatment protocol your hgb should actually be at 10 if you are on ribavin. I should add that my husband was on a minimal dosage of 200 mg of ribavirin daily because he was so anemic. If I'm not mistaken, I believe the protocol is to reduce the ribavirin if the hgb goes under 10. I'll see if I can fine the info I read on it.
I'm post transplant and did interferon/riba treatment successfully. I was told that because the riba has a long half life it was fine to take it with breakfast and lunch since I too, found it gave me problems sleeping.
My only advice, that I give to everyone, is to try and walk, do some gentle exercise as much or as little as you can. I do believe it helps keep us healthy and gets us through this difficult treatment.
Thanks in advance for any info on anemia with hemoglobin under 10, which is where I am at and falling weekly. I too take 200mg of riba twice a day along with the Solvaldi and Olysio and also my immune suppressants, 2 times a day; Quite the cocktail!
Needless to say I am mostly wiped out and somewhat sleepless and losing weight from loss of appetite etc.
It doesn't sound like the transfusions boosted your husband's hemoglobin? I thought that was the point? Any info is greatly appreciated.
Here is a link to the Sovaldi prescribing information. See page 3 for a table on Ribavirin dosing information in relation to the hgb.
Hope this helps.