Hepatitis Forums
Hepatitis C Main Forums => Post Hepatitis C Treatment => Topic started by: almostfinished on January 01, 2019, 12:47:52 pm
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As most on here will remember I had a very hard time on Epclusa, although it killed the Hep.C I was very ill and pale and dizzy from the Tx. Went to Dr.'s on the advice of other Forum members but they said it was my body fighting to get rid of the disease. They ran many tests, most being completely normal. After TX I continued to feel ill, like I was still taking the pill. It took 5 different Dr.'s to figure out that I now have Lupus (negative before treatment) and another blood disorder. I am still dizzy, pale and fatigued. They have not come out and said positively, but hinted that the Epclusa could have contributed to my lack of immune system and blood disorders. I wish i never had TX as I was fine before starting just the usual aches and pains. I am mostly bed ridden, as the pains in my feet and dizziness are unbearable. I am 66 in two weeks and now know that TX was a BIG mistake.
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I am 2 year cleared with Epclusa now says it is back!
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Tried to get a copy of what I signed before beginning treatment and was told it was unavailable????
My liver is swollen but my liver function tests are okay and my Liver Specialist will not give me an appt.??
My family is freaking out, I have to go to a hematologist in two week I will be re-tested for the Hep. c virus then, I knew this miracle treatment was too good to be true. :(
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I am 2 year cleared with Epclusa now says it is back!
Have you had an antibody test? We who were once infected willtest positive for hepatitis c antibodies for the rest of our lives. Antibodies are made by our own bodies in response the invading hepc virus. Antibodies are not the virus they only mean we were once exposed.
Have you had the HCV RNA by PCR test? That is the one we sometimes call a viral load test. This test looks for the hep c virus itself. Only this test will tell you if you are currently infected with hep c. Another sign of reinfection could be elevated liver enzymes. Although not everyone initially will have elevated liver enzymes and having elevated liver enzymes has other causes than hep c.
Have you had a risk for a reinfection a new infection?
Hoping you are not reinfected or relapsed.
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Hi Lynn Thanks for getting back, I had the 3rd negative Hep.c test last December with a 0 viral load, the CH50 Compliment antibody and the ANA test only look for auto-immune disorders and the higher the number the more likely it's SLE lupus. The other abnormal test in the gamma gobulins is undetermined until I see a hematologist and an oncologist. My B12 should be about 2-600 it is 24 and my iron is almost undetectable. If you read through my old posts you will see this all starting after I started the Epclusa. :(
Also my Liver Specialist is reluctant to see me and re-test me.
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Hi almost finished
I was responding to MommaT. I really only know some stuff about hep c and liver disease.
Not sure you would need to see a liver specialist since it seems you are cured of hep c so probably a doctor who is a specialist in autoimmune issues and lupus.
I hope you are able to find answers and find the relief from pain you seek
Wishing you the best in the New Year
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Hi almost,
I remember you.
What a b*****d!!
Definitely you should pursue any and all avenues you can.
It sounds as if your immune system is having a hard time re-setting.
(Lupus is an immune disorder, isn't it?)
Hoping that you get some relief, soon.
A.
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Hi Andrew...hope you are doing well, I have just joined a support group for Lupus and have found out that I am not alone in getting the symptoms soon after starting treatment for the Hep.
I hope that it is just the Epclusa as many on this forum took Harvoni and other treatments and have had no ill response to their immune system.
The problem really started with the anemia so others should watch carefully.
Not too much I can do about it at this point but see what Dr.'s can offer me. My hemoglobin is very low so hopefully after some transfusion I will have a bit more energy.
Stay well and thank you for getting back to me.
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For the anemia I would take 1-2 TBS of BSM a day (blackstrap molasses), and eat grass fed beef and liver often.
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Thank You for getting back Lukey I am receiving massive iron and B 12, my daughter is really into nutrition and is helping me.. along with the supplements from the Doctors.
So far no change but I am hoping for improved health soon.