Author Topic: Feeling really down.... (Read 11956 times)

TexasRose · « **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?

Mugwump · « **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

TexasRose · « **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!

KimInTheForest · « **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

Lynn K · « **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

BillT · « **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.

rk · « **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

Angelica · « **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.

Philadelphia · « **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.

sherfire · « **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.

jakas · « **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

rk · « **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.

sherfire · « **Reply #12 on:** March 20, 2017, 02:45:37 pm »

Quote from: rk 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.

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.

rk · « **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.

elias · « **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?

sherfire · « **Reply #15 on:** March 20, 2017, 06:40:35 pm »

Quote from: elias on March 20, 2017, 05:32:40 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.

KimInTheForest · « **Reply #16 on:** March 20, 2017, 06:48:38 pm »

Quote from: sherfire on March 20, 2017, 06:40:35 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

elias · « **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

Angelica · « **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.

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Author Topic: Feeling really down.... (Read 11956 times)