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Post transplant, hepC treatment

I am post-liver transplant, 3-1/2 years with recurrent HepC, 1a, with Q80 mutation, grade-2, stage3-4.
I am being treated (now 6 weeks of 12) with Sovaldi, Olysio and Ribavirin, and wish to better understand how essential is ribavirin to take throughout the 12 week course. My viral load was non-detectable at  4-weeks. I am completely house bound by symptoms which I attribute to the ribavirin. I cannot find any Forums with patients having a similar profile. I cannot imagine that I am one of a kind?  Any information would be extremely helpful.
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Avatar universal
Hi Hector,
James here. I have an appointment on Monday to meet with my G.I. doc who is prescribing my triple therapy, based on Dr. Terrault's recommendations. He as most non-specialist physicians do not know much about these meds or treatment for symptoms. For them the basic protocol for transfusions is a hemoglobin of <7, however, I have read on the Solvaldi site that at <9 it is recommended to either stop the Ribavirin or to transfuse.As of last week's bloodwork I was at 9.  I will show him this data.
My question is this: will a transfusion(s) increase my energy? It is a bad idea, I believe, to stop the Ribavirin which may increase the likelihood of rebound.
Have you heard anyone speak on this, i.e., transfusions for anemia creating an increase in energy?
My heart races a good part of the day, particularly if I am even modestly active. I have not been able to work now for two months and am running out of my meager reserves to pay bills. I've got to get some 'juice' back and start earning again. I have two college age sons that require some continued financial support.
Thanks in advance for any input. James
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Avatar universal
Here is a link to the Sovaldi  prescribing information. See page 3 for a table on Ribavirin dosing information in relation to the hgb.

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/sovaldi/sovaldi_pi.pdf

Hope this helps.

Nan
Helpful - 0
Avatar universal
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.
Helpful - 0
163305 tn?1333668571
Hi,
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.

Good luck~
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Avatar universal
"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.

Nan
Helpful - 0
Avatar universal
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.
Helpful - 0
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