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Author Topic: Feeling really down....  (Read 11279 times)

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Offline TexasRose

  • Member
  • Posts: 9
Feeling really down....
« on: February 15, 2017, 06:52:36 pm »
Hi everyone...so, this is my 8th week after finishing Epclusa. Waiting for that 3 months blood work to tell me if I am still virus free. I feel like the virus is coming back. Has anyone else felt this way as you waited? I am a genotype 3, from what I understand, it is trickier to get rid of than other genotypes. When I had finished my Epclusa, and my doctor told me I am undetected, he said everyone ends up like that at the end of treatment. It is the 3 month after blood work test that is the REAL test of whether I am cured. At first, when I finished treatment, I felt so positive and happy. Gradually, after many horrible migraines, vertigo, my eyes slightly turning yellowish again...I feel so discouraged. The thing is, they said my liver was in great condition. My eyes were a yellowish before I started treatment. They were looking better after treatment...and now they seem to be slowly changing back. My doctor said I probably have Gilbert's syndrome and that is why that happens. He had told me this during treatment. Hopefully that is all it really is. Time is going so slow. I want to be retested so bad now already, but I think they think I am being paranoid. Any thoughts?

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: Feeling really down....
« Reply #1 on: February 15, 2017, 07:01:56 pm »
You are certainly not alone with having a spell post treatment where it seems as if the virus has come roaring back. Many here have experienced this. The best guess as to why this happens to some of us is that our immune system suddenly creates huge quantities of HCV antibodies and like catching any virus the damage done by a sudden influx of antibodies  can seem symptomatic of a chronic disease progression.

Just a question and a thought, have you ever experienced strong reactions to an inoculation? For example some people have strong reactions to agents that create antibody reactions like flu shots and the like. I know that there have been a few times when I have had a shot and bingo it was like catching the crud that the shot was designed to protect you against.

All the best getting the good news that you are SVR in a few short weeks the waiting is definitely the hardest part of treatment :) . According to the stats chances that you have relapsed are very slight indeed.

Cheers
Eric
« Last Edit: February 15, 2017, 07:09:27 pm by Mugwump »
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline TexasRose

  • Member
  • Posts: 9
Re: Feeling really down....
« Reply #2 on: February 15, 2017, 07:27:31 pm »
Hi Eric,
Thank you for your encouraging words...and hope. The speculation about the HCV antibodies sounds plausible. Hopefully, that's what going on. Honestly, I haven't had any sort of vaccine in many years...never have had a flu shot either. So, I probably wouldn't be able to say for sure if I have strong reactions to inoculation.  :-\
I will definitely notify you all once I get those 3 month results. Until then, trying to take one day at a time....some days being way harder than others.
Thank you!    :)

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Feeling really down....
« Reply #3 on: February 15, 2017, 10:33:13 pm »
Good luck TexasRose! The waiting is hard, for sure. But the very large majority of people who are virus free at end of treatment remain that way for their next test 12 weeks post-treatment. And yes, as Eric said, a lot of us felt crappy post-treatment and wondered what was happening. Keep your spirits up. Only a few more weeks to wait until you will have your confirmation. :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: Feeling really down....
« Reply #4 on: February 16, 2017, 06:35:26 am »
Yeah the 12 week wait is hard so long to wonder and worry. I relapsed after treating with sovaldi and olysio but u felt nothing to tell me I had.

When I treated with Harvoni 24 weeks and ribavirin for 15 of those weeks the only thing I felt was better after my ribavirin anemia improved but other than that not much different.

The only way to know is wait the 12 weeks and then the wait after that for results. All I can suggest is find something to occupy your time to help the time pass faster.

Wishing you all the best
Lynn
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 BillT

  • Member
  • Posts: 573
Re: Feeling really down....
« Reply #5 on: February 18, 2017, 07:17:20 pm »
Hi Rose,
           Don't bang your head against the wall.I know it's hard but wait until there's something to worry about.I think we all go through it but you just put your body through hell.Wait for the bloods and give yourself some time to recover a bit.
Contracted 1973 Military
Diagnosed 1980
Pegintron treatment 2004 unsucessful
Genotype 1b
FibroScan 10 (F2)
Start Viekira 10.17.2015

AST 40 ALT 69
VL 440k
10.31.2015/Week 2 Labs : AST 14/ALT 17
No VL done
10.14.2015/Week 4 labs : AST 14/ALT 14
VL UNDETECTED!!!
12.11.2015/Week 8 Labs : AST 12/ALT 13
No VL done
01.05.2016/EOT labs : AST 15/ALT 13
VL UNDETECTED!!!

12 WEEK SRV:UN-BLOODY DETECTABLE !!!!!!!!

24 WEEK SVR:UNDETECTABLE!!!! Thank You God.

Fibroscan 6Mo. Post Treatment 7.15.2016-5.3(F1)

Offline rk

  • Member
  • Posts: 99
Re: Feeling really down....
« Reply #6 on: February 28, 2017, 01:20:51 am »
Hi Rose,

Sounds like we finished close to the same time range. I was undetected in less that two weeks and the same at the end. After I felt bad for at least three weeks. I believe it was a bad sinus infection.
Sometimes we may feel bad for unknown reasons and not bad enough to seek professional medical advice. Don't let it get you down, being cured is strongly in your favor. My 12 weeks is due towards the end of March. Wish you the best.

Rod
9/14/2016 pre-treatment
GT 2
Viral load 2940
Platelets 142
AST        16
ALT        6
Fibrosis stage  F3
LSM        10.1 kPa
Started Epclusa 10/7/16
EOT + 12 weeks HCV undetected

Offline Angelica

  • Member
  • Posts: 29
Re: Feeling really down....
« Reply #7 on: March 01, 2017, 09:43:24 am »
Hi Texas Rose,

I was on Harvoni and I have already reached 12 weeks post tx, all my tests have been fine. However, the last two weeks were terrible for me. I might have caught a bug that I just could not shake off. At some point it felt almost as if all my symptoms were back. Yesterday I started to feel better and today I am in a more normal state. I think the therapy takes a lot out of people and we need time to recover from it as well as from the illness we had.

« Last Edit: March 01, 2017, 11:44:03 am by Angelica »

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Feeling really down....
« Reply #8 on: March 02, 2017, 03:31:27 pm »
Everyone has said what I would've. So I'll just add to the pile on. Waiting is the WORST. It's really hard. And every twinge feels like it could be a harbinger of the virus returning. Chances are really good it's not. The odds are in your favour. And soon you'll know for sure. Hang in there.
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline sherfire

  • Member
  • Posts: 20
Re: Feeling really down....
« Reply #9 on: March 10, 2017, 06:58:37 pm »
I'm having this issue too Rose. Not with the yellowing of the eyes but I suddenly feel like I've hit a wall about a month post treatment. I'm very fatigued, my muscles are tense, and I feel anxious, and am dizzy. I had been doing really well for a couple of weeks and was working hard to improve my health. Suddenly a few days ago I became very fatigued and haven't recovered.

I dunno if I did too much too quickly but I am leaning towards things improving. I hope that things improve for you as well and you get some answers soon. Stay positive and try to do what you can to stay healthy. :D

Offline jakas

  • Member
  • Posts: 265
Re: Feeling really down....
« Reply #10 on: March 19, 2017, 03:43:35 pm »
Guys it takes a while to get well took me nearly 10 months post Harvoni to get over the liver are pains so hang in there and the wait for the svr 12 does get us worked up
M/57 yrs.
Contracted (Unknown) 10-20-30 yrs back ??
Treatment Naive
Geno 1a&1b
VL  17+ million
ALT 200+, AST 170+
Fibroscan F4 ( 26+ kpa ) on 8th Dec. 2105
Started Tx 11th Dec.2015 ( 12 wks. Gilead Harvoni)
7/1/2016 :Viral Load|<25 UND.
23/1/2016: ALT 34 , AST 35, ALP 143
8 week NO labs done
EOT:03.03.2016 ( 84 pills eaten )
ALT 26, ALP 124, BIL .54
V/L <25 UND E.O.T.
4 weeks E.O.T. V/L UND::: SVR 4
SVR 12 and  SVR 24 on 16/8/16
Fibro 24.5kpa 23/05/16
SVR 63 05/17
Fibro 17.03.2020 kpa 6.3

Offline rk

  • Member
  • Posts: 99
Re: Feeling really down....
« Reply #11 on: March 20, 2017, 02:10:29 pm »
I'll add to this. I am 1 week from post 12 weeks on Epclusa. Recently I started getting very anxious, not sleeping well and it feels like the brain fog has returned.
There is more but this is happening along with a breathing problem and a rash so its hard to get a grip on a resolution.

I think my resolve is a test or chest x-ray on breathing and maybe test for allergic reactions. I will inform my doc on possible residual symptions from Epclusa.

It all started in the past month along with a new medication. I have most doccumented but trying to get a grip on my situation with a less than normal brain is a test.

I just thought I would write this. It may or may not be of any help. I think when one has post treatment problems they like to hear from those that have had similar.
9/14/2016 pre-treatment
GT 2
Viral load 2940
Platelets 142
AST        16
ALT        6
Fibrosis stage  F3
LSM        10.1 kPa
Started Epclusa 10/7/16
EOT + 12 weeks HCV undetected

Offline sherfire

  • Member
  • Posts: 20
Re: Feeling really down....
« Reply #12 on: March 20, 2017, 02:45:37 pm »
I'll add to this. I am 1 week from post 12 weeks on Epclusa. Recently I started getting very anxious, not sleeping well and it feels like the brain fog has returned.
There is more but this is happening along with a breathing problem and a rash so its hard to get a grip on a resolution.

I think my resolve is a test or chest x-ray on breathing and maybe test for allergic reactions. I will inform my doc on possible residual symptions from Epclusa.

It all started in the past month along with a new medication. I have most doccumented but trying to get a grip on my situation with a less than normal brain is a test.

I just thought I would write this. It may or may not be of any help. I think when one has post treatment problems they like to hear from those that have had similar.

There a many reports of breathing issues from these new hep drugs. My first treatment with Sovaldi gave me bad chest pains and difficulty breathing. My doctor took me off of the drug for that reason. Considering that Epclusa has the same stuff in it that Sovaldi has..................... My breathing is ok now, though.

Offline rk

  • Member
  • Posts: 99
Re: Feeling really down....
« Reply #13 on: March 20, 2017, 03:40:39 pm »
Thank you sherfire, I was not aware breathing could be an issue. I am EOT + 11 weeks. I would think if Epclusa was a factor it would be resolved by now. I will note it though.
9/14/2016 pre-treatment
GT 2
Viral load 2940
Platelets 142
AST        16
ALT        6
Fibrosis stage  F3
LSM        10.1 kPa
Started Epclusa 10/7/16
EOT + 12 weeks HCV undetected

Offline elias

  • Member
  • Posts: 285
Re: Feeling really down....
« Reply #14 on: March 20, 2017, 05:32:40 pm »
Quote
I'm having this issue too Rose. Not with the yellowing of the eyes but I suddenly feel like I've hit a wall about a month post treatment. I'm very fatigued, my muscles are tense, and I feel anxious, and am dizzy. I had been doing really well for a couple of weeks and was working hard to improve my health. Suddenly a few days ago I became very fatigued and haven't recovered.


How's your sleeping been?
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline sherfire

  • Member
  • Posts: 20
Re: Feeling really down....
« Reply #15 on: March 20, 2017, 06:40:35 pm »

How's your sleeping been?

It's been good, thanks asking. I think that my body is just going through cycles of healing. My energy levels have been pretty high for periods of time where I overexert myself. I think the following days of fatigue are my body doing some healing. I've been pushing things pretty hard. I feel it paying off so I'll keep it up.


Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Feeling really down....
« Reply #16 on: March 20, 2017, 06:48:38 pm »
It's been good, thanks asking. I think that my body is just going through cycles of healing. My energy levels have been pretty high for periods of time where I overexert myself. I think the following days of fatigue are my body doing some healing. I've been pushing things pretty hard. I feel it paying off so I'll keep it up.

That's good to hear, sherfire. The path to healing is not a straight line. And becoming cured of Hep C (as in, elimination of virus from body) turns out to just be the first step on the healing journey. Many if not most of us entered treatment thinking once we're cured, we're done. But in fact, that was just the beginning of healing.

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline elias

  • Member
  • Posts: 285
Re: Feeling really down....
« Reply #17 on: March 20, 2017, 07:23:40 pm »
On days that I'm sleep-deprived, which lately has been all-too-often, I have  those achey pains others mention. less so when rested.

Sleep patterns r often affected by HCV:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2829649/


I'm guessing there's possibility that when HCV is cleared, the circadian rhythms r "seeking" to establish new patterns. Hence sleep disruptions or disturbed sleep quality.. Hope thats what it is with me. Longshot though..

But anyhow in your case , you're sleeping well . Which is a blessing
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Angelica

  • Member
  • Posts: 29
Re: Feeling really down....
« Reply #18 on: March 22, 2017, 03:22:42 pm »
My sleep too could be better. :(
And I have so much work to get through...
Feeling really down? That is me today.

« Last Edit: March 22, 2017, 03:30:04 pm by Angelica »

 


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