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Author Topic: Just Me back again  (Read 11429 times)

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Offline almostfinished

  • Member
  • Posts: 32
Just Me back again
« on: January 01, 2019, 12:47:52 pm »
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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Offline MommaT

  • Member
  • Posts: 65
  • Tomorrow Is a New Day
Re: Just Me back again
« Reply #1 on: January 01, 2019, 01:07:31 pm »
I am 2 year cleared with Epclusa now says it is back!
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62 year old Female
Treatment Naive
Genotype 2b
2001 Dx Donated blood after 9/11
2002 Biopsy F1
2016 Fibroscan 15 F4
Comp Cirrhosis Stage 1
pretreatment VL 1,722.660 mil
platelets 122 low
alpha 2 Macroglobulins 647
Apolipoprotein A-1 214
GGT 67 high
AFP Serum Tumor Marker 11.4
ALT 563 AST 332
2016 Sept 16 Epclusa started
4 wk VL <15 HCV Detecte
ALT 19 AST 18
8 wk VL HCV Undetected!
12/8/16 EOT Yipee!
12 wk VL HCV Undetected
SVR 12
SVR  24  10/5/2018 HCV Undetected   12/10/18 DETECTED????????

Offline almostfinished

  • Member
  • Posts: 32
Re: Just Me back again
« Reply #2 on: January 01, 2019, 01:18:20 pm »
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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Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Just Me back again
« Reply #3 on: January 01, 2019, 02:42:51 pm »
Quote from: MommaT on January 01, 2019, 01:07:31 pm
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.
Logged
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline almostfinished

  • Member
  • Posts: 32
Re: Just Me back again
« Reply #4 on: January 01, 2019, 04:24:14 pm »
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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Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Just Me back again
« Reply #5 on: January 01, 2019, 04:48:15 pm »
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
« Last Edit: January 05, 2019, 05:11:57 pm by Lynn K »
Logged
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline andrew j

  • Member
  • Posts: 477
Re: Just Me back again
« Reply #6 on: January 05, 2019, 04:47:44 pm »
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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Offline almostfinished

  • Member
  • Posts: 32
Re: Just Me back again
« Reply #7 on: January 05, 2019, 06:41:54 pm »
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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Offline Lukey

  • Member
  • Posts: 319
  • Let Thy Food Be Thy Medicine
Re: Just Me back again
« Reply #8 on: January 07, 2019, 10:51:02 pm »
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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Male -  HCV since 1982 - Born 1951 ~ Geno 1a

Did 8 weeks of Harvoni in 2015. Got normal AST & ALT and undetected VL by week 5, then relapsed 4 weeks post.
-----------------------------------------------------------
July 5, 2018 : began 12 weeks of Vosevi with a VL of 540,000 and AST & ALT of 65 and 105.
2 weeks in : AST 19, ALT 20
5 weeks in : AST 18, ALT 12, VL "<15 detected"
10 weeks in : AST 19, ALT 14, VL "<15 not detected"
4 weeks post : "<15 not detected"

Offline almostfinished

  • Member
  • Posts: 32
Re: Just Me back again
« Reply #9 on: January 08, 2019, 09:42:39 am »
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.
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