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After Hep C Treatment

Infectious Diseases | Last Active: Jan 2, 2023 | Replies (170)

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@simple27

Hi everyone : ) I'm new here but wanted to share my experience with Harvoni. It's a complicated situation so be warned, this will be a 'wall of text' lol. I just want to give as detailed of a response as possible in regards to my personal story with this, and maybe someone else here has experienced the same or may read something helpful. Here we go...I will start by sharing my age. I am currently 36 years old and will be 37 at the end of this month. Back some time in 2013 or 2014 (not quite sure exactly) I got a call from my PCP (primary care doctor) asking me to come in because my hemoglobin was elevated. As far as I can recall, this was found during a routine physical. I went to her office and she suggested I see a rheumatologist as my blood work was indicative of an autoimmune disease. I went to the rheumatologist and during our consultation I let him know that I had hepatitis C. At that point he told me that I needed to cure the hep C before he could do anything for me. So I then got referred to an infectious disease specialist. I believe this was in 2014. I met with the infectious disease specialist and he told me about this amazing new drug that hadn't yet been approved by the FDA, but would be getting approved soon. Harvoni. He told me that there were hardly any side effects and that the treatment for me would be 8 weeks. I had no liver damage at the time. So hep C doctor told me that the only current treatment at the time (2014) was interferon and that it was so brutal on the body that I was better off waiting for the Harvoni approval. Although I would be a tricky case for being one of the first to be approved for this drug without having liver damage. Fast forward...Harvoni gets FDA speedy approval. I meet with my hep C doc in early 2015. He tells me Harvoni got approved and that he will fight my insurance to get it covered even though I had no liver damage. It was a semi-lengthy process for him to get my insurance to approve, but he made it happen and I was prescribed Harvoni. I have no "proof" of a direct link to Harvoni with any of my numerous health problems, all I can share is that these health problems did not exist prior to taking Harvoni. Also, please forgive my lack of memory in regards to some details. My memory has gone to complete shit. Halfway into taking my 8 weeks of Harvoni I had a CBC and Differential done as well as a few other tests. At this point, 4 weeks into treatment, my hep C results already were showing "none detected". However that CBC and Differential labs showed my hemoglobin to be 19.1 and my hematocrit to be 55.8%! These results made their way back to my PCP who immediately called me and told me to come into her office. She did a quick physical exam (felt my neck and my belly) and said that she thinks I might have leukemia. Good Lord! I was NOT expecting to hear THAT! She referred me to a hematologist. I saw the hematologist in October of 2015 for the first time. She ran a bunch of blood work which included the JAK2 mutation tests. JAK2 blood tests came back as "not detected", however my Erythropoietin level was only 4 mU/mL (out of a lab range of 4 - 27 mU/mL). So basically high hemoglobin, high hematocrit, low EPO and no detected JAK2 mutation. Bone marrow biopsy here we come! Ugh, dreaded. But trucking along in hopes of finding out why I suddenly feel so awful and hopefully a solution to it! Bone marrow biopsy was done in November of 2015. BMB was all-in-all inconclusive of anything. Rare here, atypical here, findings somewhat nonspecific, difficult to exclude early manifestation of a myeloproliferative disorder, etc. So there I was, feeling like complete death, zero energy, extreme fatigue and I could go on and on with the symptoms...and nothing. No answers! No help to make myself feel better! At this point the hep C was cured, but now I was wrapped up in hematology so badly that I still, as of right now, have not yet made it back to the RA doctor! FOUR years later! I have been tossed around between specialists all over the damn place. I went through a brutal 2 years of consistent appointments, tests, scans, etc. all to give no solid answer/diagnosis because my tests make no sense and conflict with each other. Or to get honest, I'm missing that one diagnostic criteria for polycythemia vera...the JAK2 mutation. My hemoglobin and hematocrit levels have been consistently high since 2014/2015. I have had some infusions/phlebotomies to bring my levels down, and those worked wonderfully! Believe it or not, my story gets far more detailed and far more just crazy from here. But I will leave it at that because I am already embarrassed by my super long post. I guess I just felt moved to share some of my experience with you all. I wish you all the best. God Bless!

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Replies to "Hi everyone : ) I'm new here but wanted to share my experience with Harvoni. It's..."

Wow, that is something else. I really don't know what to say. It was my belief that treatment was only indicated if your liver enzymes were high and a liver biopsy indicated treatment. But, maybe the kickbacks are continuing and that would be a doctor's incentive to treat. Sorry you',ve been through so much. Check out The Sunshine Act.

I would like to hear more from you as my current situation is the same as yours this has been going on since treatment with a Harvoni in Sept 2015 finished Dec 2015 been bounced around from dr to dr everyblood test you can imagine every scan mri spinal tap the list goes on and on and nobody can help me I keep getting pushed around to try to find answers and we are not he only ones i am in other groups where people are having serious problems I feel like I am dying a slow death,my brain had problems on treatment and I was so sick and still am,I wish I waited to see the side effects as they didn’t know what they were at the time of approval of the drug,I was told by the dr that headache and fatigue was the only side effect,well that was not true,they didn’t know long term side effects,as it was pushed through,I can barely move every joint hurts I have severe tinnitus the list goes on and on,my blood work went bonkers,hematologist said it’s a very potent drug and it effected my blood please respond thank you