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Treatment

Could anyone that has been treated give me some info? I am 57yo I have hepc ,don't know how long I have had it but I suppose its been a couple of decades. It has turned into cirrhosis. I feel ok and have been seeing a doctor for 5 years regularly. My last visit a week ago I asked the doc about getting the new treatment with sovaldi. I was told I was not a candidate for it because of my low platelets, which are at 30. She told me that my disease was stable and my meld was at 9. I started eating a lot of vegetables and lost 30 pounds and have been feeling much better in the last 6 months. I know the hep c will continue to damage my liver and eventually result in failure. What I need to know is if the doctor knows what she is talking about or thinks Medicaid wont pay for it so she is telling me that. Has anyone received treatment with low platelets? I would really like some input if I should change doctors or what.Thanks.
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Avatar_f_tn
I can certainly understand why you are anxious to start this new treatment.
Your platelets are indeed low at 30. My guess is your doctor thinks there is a high risk of your platelets dropping even further on this treatment.  

Is your doctor a hepatologist?  If not, I would suggest you get a second opinion from a hepatologist connected with a liver transplant center.  They are the best in the field.

Your MELD score is low at 9 which is a great thing.  

Good luck!

Nan



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Avatar_m_tn
When I was treated in 2011 they tested me for all kinds of things including platelets.  They monitored my platelets every 2 weeks during treatment.  My platelets were normal at the beginning of treatment and had dropped considerably by the end.  It's one of the most common side effects.

It sounds like you've been doing everything right.  Congratulations about the wight loss.  Keep it off because that will help when you eventually do start treatment.  I lost 40 pounds before treatment because I had fatty liver.

I'm pretty sure that no doctor would start you on treatment with platelets that low.  They have to bring that up before you start.  You just wouldn't be able to finish the treatment if they started you now.  
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Avatar_m_tn
My guess would be you would need to do and interferon free treatment with beginning platelets at that level, I would agree no doctor would even consider doing and interferon based treatment. Wishing you the best.
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Avatar_m_tn
Are you Geno 1.  I was assuming you were in my answer.
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Avatar_m_tn
Kirk brings up a good point as if your a genotype 2 or 3 then interferon is not used and I've not heard of all oral treatments effecting ones platelets. But at your low level only a Hepatologist can really answer your question.
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Avatar_f_tn
Hi
My husband saw his doctor today and although his platelets are in the low normal range (152), his red blood cells and hemoglobin are definitely on the low side.  Before they put him on the Sovaldi + Ribavirin for 24 weeks, they are going to get his numbers up. They plan to put him on Procrit, check his iron levels, etc.  His doctor is a hepatologist at a major liver transplant center.

  This is exactly the reason I advised you to see a hepatologist.  You wrote that your doctor said you were "not a candidate for it because of my low platelets, which are at 30".  I would want to see someone who is among the best in the field, who will consider any and all possibilities to help  you get ready to be a candidate for treatment.  I got the impression from your post that this doctor just dismissed the possibility of treatment, period.

I wish you the best,
Nan



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Avatar_m_tn
nan535 provided just the kind of insight you need.  You should research ways to increase your plateletes and discuss your options with a doctor.
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Avatar_m_tn
Thanks for the info. I feel a little better knowing what I am looking forward to. God Bless
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Avatar_f_tn
Hi.     Kinda in same boat.     Go to Mayo Clinic.      Meld 8.     Started Sovaldi Jan 15.     Call came today.      Virus gone.       2 weeks!!!!!!    Geno 2      My platelets are low but I think 100 or so.        Go get a 2 nd opinion.    I have cirrhosis  and it cleared   Anyway.      Good luck.         K
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Avatar_f_tn
Just wanted to update you on my husband.  He got approval for treatment - Sovaldi + Ribavirin for 24 weeks!  He is Geno 1a. He had to stop triple treatment after 5 weeks due to major anemia.  He had a liver transplant in June, 2012 but the new liver now  has cirrhosis because of billary tree damage and aggressive recurrent Hep C.

His hemoglobin is below normal so he had his first shot of Procrit today to help increase his red blood cell count. Ribavirin can cause anemia and given his history when he did triple treatment (needed transfusions) Dr wants to be extra careful.  She will monitor his labs and let us know when to start the Hep C meds.   It's hard to have the meds in the house and not be able to start treatment but we know its important to get it right.  

I hope you change to a hepatologist if your doctor specializes in something else.  You need the best in the field to get you ready for treatment. Someone like my husband;s doctor.  We re so grateful to have this opportunity to "slay the dragon".

May God bless you and guide you.

All the best,
Nan
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