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Author Topic: Question for the relapse crowd --Did you feel it come back?  (Read 9418 times)

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Offline DesertGuy

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  • Posts: 134
Question for the relapse crowd --Did you feel it come back?
« on: February 19, 2015, 05:11:45 pm »
Reason I'm asking, past 48 hours or so I have been having mental anxiety--( up's and down's) and a general weird feeling that I had before I started my 24 week treatment. I had a good SVR4 and am a few weeks away from the 12 week blood test. What I'm feeling is basically how I felt before and a few weeks into treatment. I felt it go away I think when the Sovaldi started doing it's thing. I have been feeling great, and now I am SO VERY paranoid that the virus is coming back with a vengeance. I did 24 weeks of Sovaldi/Riba.

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Question for the relapse crowd --Did you feel it come back?
« Reply #1 on: February 19, 2015, 07:00:38 pm »
When I relapsed I did not feel it coming back, although when I got hep C originally, I had a very clear symptoms.

Actually, I think there is a different question to ask: How many of you responded, and thought hep C was coming back, but it wasn't? This happened to me, and I know it happens a lot. You see, the symptoms of hep C are not hep C-specific, they are common immune response symptoms, so it can feel like it is returning every time we are fighting something off.   
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Question for the relapse crowd --Did you feel it come back?
« Reply #2 on: February 20, 2015, 04:14:26 am »
I felt no different but I didn't really feel appreciably different before, during, or after treatment except for the olysio sun sensitivity.

My only warning was I had liver function test drawn at the same time as the viral load and of course I got the liver function test came back first. When I saw my liver function test results I noticed that my liver enzymes that had been normal throughout treatment now one of them had become slightly elevated again above normal and I thought "well that isn't a good sign"

But nope didn't feel a thing
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 lporterrn

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  • LucindaPorterRN
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Re: Question for the relapse crowd --Did you feel it come back?
« Reply #3 on: February 20, 2015, 01:45:46 pm »
Ditto on what Lynn said - that was my tip off too.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Trenz

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  • Posts: 27
Re: Question for the relapse crowd --Did you feel it come back?
« Reply #4 on: February 20, 2015, 11:07:46 pm »
Hi all.   I did Sovaldi, Riba, peg for 12 wks, undetectable at 8 wks. I found out 90 days after EOT that the Dragon was still alive. I also didn't feel a thing. Not until I was told about the relapse! That day might have been the worse I've felt in my life.

Yesterday I started Harvoni and Riba for 24 wks. I'm cautiously optimistic!

Offline badbradley

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  • Posts: 294
Re: Question for the relapse crowd --Did you feel it come back?
« Reply #5 on: February 20, 2015, 11:38:05 pm »
Same here. Never felt a   thing!
                                       

S/O 12wks
« Last Edit: February 20, 2015, 11:51:55 pm by badbradley »
Geno 1a
Sov/Oly 12wks - relapse
Har/Riba 12wks
Alt-16  Ast-17 SVR - 12
Alt-15  Ast-14 SVR - 24

Offline kate0b1

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  • Posts: 293
Re: Question for the relapse crowd --Did you feel it come back?
« Reply #6 on: February 25, 2015, 07:32:52 am »
I felt so gross at the end of treatment, i thought i was starting to feel better when i got the notice that i relapsed.

kate

Offline charly8

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  • Posts: 113
Re: Question for the relapse crowd --Did you feel it come back?
« Reply #7 on: February 25, 2015, 12:17:05 pm »
I absolutely felt it.  Felt a tightening in my side where my liver is.  Must have been the inflammation coming back.  I pretty much knew I had relapsed, doctor said it was my nerves, but when the test came back, sure enough I relapsed.
1a, VL  1.05 Mil, ALT 47
Fibrosure F3 December 2014
Fibroscan F0-F1 March 2015
1995 INT & RYB -non-responder
2007 PEGIN & RYB 72 weeks tx - partial responder relapsed
1/23/15 Started Harvoni 12 weeks, EOT 4/17
2 week blood work -  <15 Und. (ALT 25)
4 week blood work - <15 Und. (ALT 29)
2/20/15 added RYB (4 weeks into 12 of tx)
8 week blood work - <15 Und. (ALT 23)
(EOT) 12 week blood work - <15 Und.
4wk POST tx VL - Und. (ALT16, AST 17)

Offline DesertGuy

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  • Posts: 134
Re: Question for the relapse crowd --Did you feel it come back?
« Reply #8 on: February 25, 2015, 08:56:05 pm »
Well--that's sorta my sign. I lived with ( what I called a lower back pain past few years. came and went), then after starting my 24 weeks, it went away--not a ping--, and in doing my own searching found that a swollen liver can imitate that pain. The day I started this post I had had a 4 day back pain that went away , and I have not felt it again. And--I really felt the day the last of the Riba left me. Had about a 7, 7/12 week run of HAPPY, past few days am returning to pre treatment critical/grumpy guy. Will take 12 week blood draw in 3 weeks. Will know then I guess.

Offline Tpropane

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  • Posts: 65
  • Heal the past by living in the present.
Re: Question for the relapse crowd --Did you feel it come back?
« Reply #9 on: February 26, 2015, 01:46:06 am »
Desert Guy, I felt the onset of my cirrhosis. I felt it as a direct result of the the relapse of my Hep C. After relapse (a few years) I called my GI and said I had upper right quadrant pain, swollen feet, joint pain, racing and irregular heartbeat, headache, dark pee. He really kind of blew me off. "Call me in a couple of days if you don't feel better," I went up and down but mostly down. Tired, tired to the point of genuine fatigue. My hep c after relapse went from F1 to full blown cirrhosis in 4 years. I should have been running liver blood panels all ALONG. AT LEAST EVERY 6 MONTHS. October 31 Fibroscan - F-4 - alt/ast 200+
I thought I was having a heart attack. Short of breath. I went in for every echo cardiogram and multiple tests and the only thing off was my liver blood tests.
Check that liver constantly via blood, ultrasound, fibroscan or MRI. Never letting this shiz out of my sight again.
Hep C 1A / TT diagnosed 2009
Non Responder Boceprevir/riba/peg 2011
F-4 Cirrhosis
TX Harvoni 24 weeks started 1/20/15
2 week labs VL 174!
4 week labs UNDETECTED !
8 week labs UNDETECTED !

 


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