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VA Hospital triple therpary

I have chirosis f4,been on tx for about 26 weeks.I was anemic and ribavirin reduced to 800 mg.Then put on procrit for a month and when my numbers went up they took me off the procrit.The numbers fell again and I am back on procrit.Going back on procrit was the worse part of my treatment.I suppose next week I will feel better.I asked if I should increase the ribavirin when my numbers were up but they said no.Now I have had my interfeon dose reduced to 135.I cleared but it took longer than 12 weeks.I guess I am wondering if this is all about money with the VA.I was never offered procrit in the beggining.I was in the hospital for another ailment when they were going to give me a shot for low plahets,but my hepatitis nurse told them no,because it could lead to one of the side effects that can occur.I forgot what she called it.I just feel like that are playing with me,and should stop tx for the better quality of life I could have.Thats my story.
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Avatar universal
I have taken 4,40,000 ul ,for the past 4 weeks.And I haven't felt as bad as this during the other weeks.The first time they gave me procrit,after three weeks I felt great.So they cut it out.When count went south,they said I had an autoimmune disease and needed back on it.They took a blood count test last week and the numbers were still low.When they go up,they will cut the procrit out again.Yesterday a dizziness struck me sitting down,and I was sure I couldn't move.I felt terrible,and was sweating from the head in a matter of seconds.If I get to feeling better and they want to stop and start the procrit again.Then I will just drop the treatment,even being in a weaken anemia state,I felt better than when starting the procrit again.
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766573 tn?1365166466
If you are taking the Boceprevir you definitely need a better strategy to manage your Hgb. Anaemia is a side effect of that made so it is unlikely your Hgb is going to remain stable even with frequent Riba dose reductions.

I did not reduce my Riba when they told me to either. I ended up lowering it but I knew I had a script for Procrit being lined up so I wanted to wait until I saw UND on my next set of labs.
_________________________
When I traveled or some customs person asked about my Riba and it was just a general question they have to ask I just came up with a simple response your Average Joe could understand. They just want to do their job and feel like they have when they usher you through.

My doctor had a letter that said I was going through Chemo therapy and I needed the meds and blah, blah blah. I used to say I was going through Antiretroviral therapy (which is the truth) but NO one understand what that means and it ended up taking more time than it should have to explain.

Nowadays I DO simply say I am going through antiretroviral therapy for hepatitis c and people don't seem to care. They seem to understand what it means.

I am thinking if you are treating with the VA the Government already knows you have Hepatitis C. If you just need a rapid explanation to expedite the transaction between you and another person - a person you will never see again like a customs official, then I would use one of the lines I provided. Bird flu sounds OK but is that even still around?
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Avatar universal
Hi and thanks.triple therapy,1a.Be another two weeks before I am in to get blood count records.
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Avatar universal
Thank you
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Avatar universal
      Hi and thanks,
I don't have a copy of my labs.The interferon was reduced because of phalates.The blood either clogs or doesn't.
    When they first told me to reduce my ribavirin,I had not cleared and so ignored them.I then cleared and they congratulated me,but said if it I didn't follow instructions they would take me off the tx.I probably cleared between week 14 and 16,not sure now.
    This is the first time for triple therapy,with boceprevir,having gone through dual therapy twice.It's hard to believe when they say even if you don't clear,your better off for taking the treatment.I used to be in excellent physical shape from exercise.But have never gone back to the same level and I gained weight rather than loose.
    I have had cirrohisis for years already.Going through customs here once after the bird flu out break in Asia.They ask me what is ribavirin for,I said it was for the bird flu.Not really,or else I would be writing a much more.Would you of told them exactly what you were taking it for?Since the government already said it wanted to know people's medical records in light of the war on terrorism.
  
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Avatar universal
Hi curly501.  Sorry you're having such a tough time with the side effects of treatment.  The protocol for managing anemia has changed somewhat with the introduction of the triple therapies.  In the past, when doctors were treating with Standard of Care (Interferon and Ribavirin), Procrit was used more readily for anemia, and Neupogen was used more readily for low white count.  When the triple therapies came out last year, the protocol seemed to trend more toward reducing Ribavirin first and managing anemia that way.  If that didn't have a strong enough impact, the trend seemed to be more toward doing transfusions.  However, over the past 6 months to a year, people on this forum have posted a wide range of ways that their doctors are managing anemia.  Some have had a Riba dose reduction, some have had multiple transfusions, and some have had Procrit.  This may be because the triple txs are still so new or it may be because so many different types of doctors are prescribing them (general practitioners, gastroenterologists, and hepatologists) and may or may not know what the best response to various side effects is.
You didn't say if you are on Standard of Care or a triple tx.
The most important thing is to stay on your treatment for the recommended time (probably 48 weeks).  You have made it this far, and you can make it all the way.  That will give you the best chance possible to clear your virus and prevent further damage to your liver.
Hang in there, and reach out to this forum when you are feeling low.  It sounds like you are getting good care.
You can do it.  As Hector said, you are half way there!
Advocate1955
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446474 tn?1446347682
Hi and welcome.

What treatment are you on? 2 or 3 drug treatment?
What genotype are you?

It is a balancing act between reducing treatment drug doses and drugs like Procrit. It sounds like they are trying to do the proper things to get you through treatment.

The biggest problem you are facing is "I cleared but it took longer than 12 weeks." For people with cirrhosis and are slow responders the chanced of SVR are low. But if you stop now, from what you are saying this may be your last chance to stop further damage to your liver. Once a person's liver becomes too damaged then the only option is a liver transplant. So you need to decide is it worth the risk to keep fighting to beat your hep C or except the fact that you may have to wait for years as you get sicker and sicker until you can get a transplant. Personally I would go for it and keep fighting. Any chance to beat hep C is worth it in my opinion. Because even if you get a transplant afterwards you will still have to treat again to try to cure yourself of the virus. Sooner or later we have to rid yourselves of hep C or it will have a major impact on our longevity. I am very sorry you are in this position. I am in the same position myself. But we always have to have hope. Despite the odds that somehow, someway we will beat the virus.

Being a vet you are a strong person. You can fight this. Give it your best. Stay focused on your goal of SVR. That is all any of us can do. We can't control the outcome but that inner strength will come in handy as you face other challenges of liver disease. I am not the strongest person but if I can do this surely you can.

So hang in there. You are half way there. Let your doctors keep you well enough to make it through this treatment. You need to keep your blood numbers within a range or you could risk a medical crises and have to stop treatment.

Be proud of making this far. Take it one day, one week at a time. Before you know it months will have gone by. Nothing last forever and neither will this treatment. Remember you are suffering in the short term for the possibility of better things in the long term.

If you could post your current blood levels. We could advise you better of what issues are most important to be aware of.

Best wishes to you.
Hector
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766573 tn?1365166466
I'm on week 26 of Triple myself. Were you taking the Incivek or the Victrellis? Is this your first time treating?

A shot for platelets? Your platelets might be OK. How low are your platelets? From what I understand it is possible to treat with very low platelets. Obviously someone with more insight about Cirrhosis is going to have to offer more insight but I can tell you that providing more details will yield a more meaningful response

Also, why the reduction Interferon reduction? What is your ANC (Absolute neutrophil count)?

What is your normal dose of Riba?

How about your haemoglobin? What was your baseline and what is it now?  There are studies that show a Riba dose reduction does not impede SVR but to tell you the truth I am not sure if it applies to cirrhosis or if there is a different rule of thumb. I am not sure if matters the week you became UND either. You mean you were not UND until week 12?

When my Hgb dropped I had a Riba dose reduction as well. I went from 8.1 to 8.9 in about a week with the Riba dose reduction. After that I started Procrit and then I reached a point where I could take my full dose of Riba. In other words, we tried to space out how often I would need Procrit while taking the full dose of Riba. It has turned out to be about once every 10 days.

Procrit is somewhat expensive so your suspicions about the VA not being more generous might not be unwarranted. I am not sure how the VA manages resources but with Procrit is there a way you could suggest the same type of strategy? You never know if it is about money until you ask if there is a way to manage your Hgb better. Are you keeping an eye on your labs? Once my Hgb dropped I had a CBC once a week. I am still supposed to be doing that but now I am not doing it as frequently.

It just seems like at 26 weeks you should have a pretty good routine with your Hgb and not have these continual fluctuations and yo-yo dose reductions. Plus, you are right, it gets harder and harder to bounce back when you have frequent Hgb drops.  

I know it's a tough road but hang in there. Maybe if you check back you can provide a little more background info.
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Avatar universal
Though I don't know the answers I am replying in order to bump your post up where it will be more visible to readers.
Good luck to you.
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