Hepatitis C Support Group
Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.
I cant remember if you are Genotype 1 or 2?
I dont know anybody from my Home Group, who is treating solely with Sovaldi. I believe you will have to take it with the low-dose Riba, until your Olysio arrives. Hang in there, and make sure not to exert yourself at all physically. Anemia causes there to be less oxygen in the blood, going to the heart, so there is more chance of heart attack
Solvadi alone, mono care, is definitely not recommended. So sorry you have had to go through the transfusions & are struggling with the anemia. Hope you can change course & replace the riba with Olysio. So cool that your doc is willing to do that for you.
However like allaboutliving said it's not a good idea to just take Sovaldi alone while waiting for the Olysio, any longer than necessary.
An interesting side note, in studies, those who developed anemia had a higher SVR (success rate) than those who did not develop anemia.
A small number of people do not tolerate Riba at all, and have to stop taking it. It would not be very effective on its own, but there are studies showing that people have been cured even after drastic reductions in Ribavirin dosing, or discontinuing it completely. It MAY be that many people could be cured with far less Riba, but who wants to take that chance? So the standard is to take as much as you can tolerate.
I don't know anything about Sovaldi or Olysio, but I do know that the drug I took - Incivek - could not be stopped. If you did stop, your body developed an immunity to it, and you couldn't start it again. If that is true for your drugs as well, that is the only issue I would be worried about.
he said for some reason it seems clear that when your red blood cells are lowered , your body is fighting the virus even better.
oh and again it was long time ago the question the OP asked but no, you cannot take just the Sovaldi. the paperwork that comes with it, clearly states do not take it alone.
also same is true of Ribavirin.
peace
hope it is sorted soon
Jan
I am scared, concerned, depressed and angry because the last thing my doc said last week when I saw him was he believed I am an early anemia patient (my first BW during tx, was on Friday7-24) and he told his nurse even though he was going on vacation that same day, he wanted her to check on my lab results on Monday, and to contact him with it, so he could advise her to tell me how to continue. She dropped the ball. I called HER on Tuesday, (yesterday) had to leave message. when she called back she said don't take any more Riba.....your rbc (?) has crashed, hard.
I told her, I just got done taking my dose........she almost had a cow. She said if I take it, I could die.
she said she'd find another doc to consult with. She called me back later and said for me to quit the Riba completely for a week and to keep taking the Sovaldi. I had a thousand questions about how you are not supposed to do that , and what is my blood counts, etc. She said something about an 13.3, 8.5, and 25.7 I know one of those is hemocrit (? sp)and not sure what else. she mumbles a lot on phone. After reading the post from bivalve, I am wondering if it is the hemoglobin of mine that is at 8.5. Probably. I wonder why I cannot just lower the riba instead of stopping ....I am trying to get her to get ME copies of these results (since she is so bad at communicating and I need to stay on top of this, I can see that) I don't know that the doc she is consulting with , is giving correct advice MY doc at that practice, is the only one who deals with the HepC patients/treatment. He told me so himself, and the nurse admitted it, too, that the others are not as educated on tx for it. as far as OP /BillyVaughn, I wonder how it turned out for him.....anyone know ?
after becoming too anemic , and had to go with the Ribavirin for about 2 weeks (? honestly i do not recall exactly how long but 1-2 weeks i think )
and i was told to keep taking the sovaldi each day , and NO ribavirin......
until my blood work came back up-
after going through it all and me crying and worrying , as it was opposite of every bit of info on it i had ever read........finally the substitute doctor shared, that he had looked into it and found research that indicates it is ok for patients on sovaldi to go without the ribavirin for up to a certain lenght of time.
i wish i could exactly what i was told but i was going through a rough time and don't recall everything said.
bottom line, it is ok , temporarily.......
oh, and when they did add back the ribavirin, i was told to take
a lowered dose----and that dosage changed, up and down over the course of my treatment........each time i'd get my CBC done, if i was getting too anemic , or getting over the anemia, a bit, the dose of riba would be adjusted.
so , i have been on it at the beginning of 1200 mg a day, and at different times, i was on it at 600 mg a day , but also 400 mg a day.
the speciality pharmacy explained it to me before my doctor did, how that works.......when they add back it can range anywhere in that amount , between 400 mg a day , divided dose//// to 800 mg per day, divided.
i think i am saying that right.