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Author Topic: 10 weeks post harvoni tx I feel like I'm walking dead  (Read 18062 times)

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Offline debham

  • Member
  • Posts: 68
10 weeks post harvoni tx I feel like I'm walking dead
« on: September 05, 2015, 01:02:04 pm »
Hi gang it's been a while since I last posted. I finished my TX with Harvoni on June 23, 2015 The treatment went well with  few if any  problems. In the last few weeks I feel terrible. My hips are killing me my shoulders hurt. I woke up one day and couldn't turn my head because of neck pain. I'm tired all the time. I can't sleep through the night because of joint pain. I am trying to stick to my exercise routine which is an hour spin class three times a week and zumba two times a week. I do it with much discomfort. Yesterday I walked three miles. I have three dogs I walked a mile with each dog. The muscles in my legs were so sore by  the end of the walk it felt as though I had walked ten miles. I've always been active. I don't know if I'm cured my post tx blood test is on Sept 15th I haven't had a viral load test during treatment at all. I sure hope this isn't a sign that the treatment didn't work and my liver has gotten worse. Anyone else have these things going on. I'm so depressed.  :(
« Last Edit: September 05, 2015, 01:03:50 pm by debham »
Diagnosed 2003
VL 300,000
Geno type 1 a
Start TX 4/01/15
VL 2.3 million
Tx Naive
12 wk Tx
Harvoni
Last Ultra Sound
No presents of fibrosis

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: 10 weeks post harvoni tx I feel like I'm walking dead
« Reply #1 on: September 05, 2015, 01:27:47 pm »
Hi Deb. Sorry to hear about your post-tx problems. I had a lot of problems post-tx. I was much worse post-tx than at any time during tx. In my case I turned out to de quite depleted in iron (ferritin) and B12, as well as slightly low on potassium. And my hemoglobin and red blood cells are both still below normal (as of week 5 post-tx) due to the hemolytic anemia from ribavirin. I am now on oral supplements of B12 and iron, and will be going in for a shot of each on tuesday just to bootstrap myself up out of this anemia a.s.a.p. (I also had a vitamin D test, since low vit D is associated with riba-anemia, but the results aren't back yet on that test.)

Even though your post-tx problems are different, and you didn't have ribavirin, it might be a good idea to go to your doctor and get tested for various vitamin and mineral deficiencies. Problems like that can be easily solved with supplements, and will improve other things that are going wrong because of nutrient deficiencies. Even if you think you are eating healthy, sometimes medication will greatly reduce the gut's ability to absorb nutrients. Age does too. So you can still end up nutrient-deficient, even with a healthy diet. In my case, I had appetite suppression throughout tx and beyond, so I think I got quite malnourished from it all as well as having the riba-anemia.

Best of luck to you, Deb. And keep us posted.

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 terih

  • Member
  • Posts: 74
Re: 10 weeks post harvoni tx I feel like I'm walking dead
« Reply #2 on: September 05, 2015, 02:51:35 pm »
Hi, Kim! Wanted to mention to you, B-12 shots are awesome!

Hi Deb, I agree with all that Kim had to say as I was totally bottomed out on D after treatment and had all of the symptoms you've described! Some supplements have made them go away!
I used Arnicare cream and Ibuprophen to relieve the pain, while I waited for them to leave totally! And they did! Teri
64 yrs. on this fine planet!
diagnosed 1993
Stage 1 cirrhosis
Genotype 1a
12 wks. Harvoni  Relapse late Feb. 2015
Currently treating with Solvaldi/Olysio
The light at the end of the tunnel, is often not a train!

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: 10 weeks post harvoni tx I feel like I'm walking dead
« Reply #3 on: September 05, 2015, 04:25:14 pm »
Hi, Kim! Wanted to mention to you, B-12 shots are awesome!

Hi Teri. Thanks! Patience told me the same thing, said she gives herself a B-12 shot every 28 days and benefits from it at lot in terms of energy and feeling good.

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 debham

  • Member
  • Posts: 68
Re: 10 weeks post harvoni tx I feel like I'm walking dead
« Reply #4 on: September 05, 2015, 04:36:41 pm »
Thanks Kim and Teri I'm glad to hear this too will come to an end. I'm looking forward to the 12 wk post treatment blood work. One and a half weeks. Just around the corner. I honestly thought during treatment I had perhaps kicked the nasty disease in the butt. I'm keeping my fingers crossed. Teri how did the study go? Did you get in? I haven't been in the loop.
Diagnosed 2003
VL 300,000
Geno type 1 a
Start TX 4/01/15
VL 2.3 million
Tx Naive
12 wk Tx
Harvoni
Last Ultra Sound
No presents of fibrosis

Offline terih

  • Member
  • Posts: 74
Re: 10 weeks post harvoni tx I feel like I'm walking dead
« Reply #5 on: September 05, 2015, 07:50:22 pm »
Kim, watch out the B12 will make you clean the house, whether you want to or not!  ;)

Deb, thanks for asking, I didn't get into the study, because they found I had way more liver problems than had been previously reported! Such is life!  :)   Teri
64 yrs. on this fine planet!
diagnosed 1993
Stage 1 cirrhosis
Genotype 1a
12 wks. Harvoni  Relapse late Feb. 2015
Currently treating with Solvaldi/Olysio
The light at the end of the tunnel, is often not a train!

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: 10 weeks post harvoni tx I feel like I'm walking dead
« Reply #6 on: September 05, 2015, 08:12:07 pm »
Kim, watch out the B12 will make you clean the house, whether you want to or not!  ;)

Haha! Well, I'm due for a good house cleaning, whether I want it or not. ;)

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 Garymon

  • Newbie
  • Posts: 1
Re: 10 weeks post harvoni tx I feel like I'm walking dead
« Reply #7 on: September 07, 2015, 10:43:22 pm »
Hi Deb. Sorry to hear about your post-tx problems. I had a lot of problems post-tx. I was much worse post-tx than at any time during tx. In my case I turned out to de quite depleted in iron (ferritin) and B12, as well as slightly low on potassium. And my hemoglobin and red blood cells are both still below normal (as of week 5 post-tx) due to the hemolytic anemia from ribavirin. I am now on oral supplements of B12 and iron, and will be going in for a shot of each on tuesday just to bootstrap myself up out of this anemia a.s.a.p. (I also had a vitamin D test, since low vit D is associated with riba-anemia, but the results aren't back yet on that test.)

Even though your post-tx problems are different, and you didn't have ribavirin, it might be a good idea to go to your doctor and get tested for various vitamin and mineral deficiencies. Problems like that can be easily solved with supplements, and will improve other things that are going wrong because of nutrient deficiencies. Even if you think you are eating healthy, sometimes medication will greatly reduce the gut's ability to absorb nutrients. Age does too. So you can still end up nutrient-deficient, even with a healthy diet. In my case, I had appetite suppression throughout tx and beyond, so I think I got quite malnourished from it all as well as having the riba-anemia.

Best of luck to you, Deb. And keep us posted.

kim :)

Offline debham

  • Member
  • Posts: 68
Re: 10 weeks post harvoni tx I feel like I'm walking dead
« Reply #8 on: September 08, 2015, 08:14:30 am »
Thanks Kim for your input. My last blood test which was 8 weeks into my TX my doctor only tested to see how my body was doing. I tested low on potassium everything else was in normal range. He didn't test for VL at that time I really was wondering how that was going his reply was the only thing we need to worry about right now is how your body is holding up against this treatment. We will worry about the VL 12 wks after treatment. I go in for blood work next Tuesday and will have a follow up with him the week after. I've been taking vitamins since I finished treatment. I stopped everything when I was on treatment. Perhaps I should be loading up with vitamin B12. I've read articles on B 12 seems our bodies as we age doesn't  absorb that vitamin as well. I plan on increasing that vitamin today. It won't hurt. I'm just glad to hear from everyone here that others have had these side effects too and there is something that can be done. Some days I feel OK so who knows. Thanks again and I will be back to let you all know how my treatment went. I hope and pray undetected.   Deb
Diagnosed 2003
VL 300,000
Geno type 1 a
Start TX 4/01/15
VL 2.3 million
Tx Naive
12 wk Tx
Harvoni
Last Ultra Sound
No presents of fibrosis

Offline Patience

  • Member
  • Posts: 40
Re: 10 weeks post harvoni tx I feel like I'm walking dead
« Reply #9 on: September 08, 2015, 03:51:33 pm »
Deb ... I am past my last Harvoni pill for 10 days now. It's been a roller coaster experience so far. I did have some sides on treatment that slowed me down, but not consistently. 2 days ago I woke up feeling great, yesterday and today I can hardly move for the fatigue. I'm thinking there's still a lot of stuff going on in my body on many levels and I'll just have to hang in there and hope it sorts itself out. So many people have said that it takes a good while to get back to "normal" ... (whatever that is!) I guess the best thing to do is what you're doing, monitor your body by doc visits and lab tests to find deficiencies and then try to address them with shots, diet, supplements, or whatever works. Wish I had a magic wand for everyone!
GT 1b
Dx2000
Tx2005 peg/rib. responder but had to stop at 20 weeks due to eye and thyroid problems. Relapse 3 months later
2013 fibrosis F2-1
TX 6/7/15 Harvoni 12 weeks VL 815,000, log 5.91,     ALT 47, AST 80
@3 weeks: VL detected <15, log <1.18
@ 9 weeks VL Undetected
EOT 8/29/15 no labs done
12/3/15  14 week post EOT: UNDETECTED!!
 ALT 11 AST 21
2/19/16  24 week post: UNDETECTED

Offline coloradogirl

  • Member
  • Posts: 70
Re: 10 weeks post harvoni tx I feel like I'm walking dead
« Reply #10 on: September 15, 2015, 04:51:55 am »
Deb,
I work out about as much as you do, and enjoy Zumba so much. My joints and muscles have ached so much starting 9 weeks into treatment and continued after treatment. I pulled my calf muscle while hiking about week 10 of treatment, which really surprised me since I just did a mini hop. Somehow, the medicine made me more susceptible to injury, and age could also be a factor, IDK. I do believe it's gradually getting better, as I don't feel as achy as I have been. I hope that trend continues so I can keep up at the same intensity I am used to (until I'm 80)! Just going to Zumba my heart out!  ;D
HCV 1a diag 2002
1st tx 2004 null responder
2nd tx 2010 clinical trial relapsed
Last biopsy 2010 F2-F3
Fibrosure inconclusive some parameters out of range
Abdominal Ultrasound 7/2015 - No sign of Cirrhosis
Pretreatment  vl 580,000
Started Harvoni 3/2/2015 EOT: 5/24/2015
4th week 3/27/2015 vl < 5.3 Undetected
8th week 4/23/2015 vl <5.3 Undetected
12 week EOT  5/28/2015 vl <5.3 Undetected
4wk after tx 6/26/2015 vl <5.3 Undetected
12wk after tx 8/19/2015 vl<15 Undetected!!!
I'm Cured! Yes!

Offline debham

  • Member
  • Posts: 68
Re: 10 weeks post harvoni tx I feel like I'm walking dead
« Reply #11 on: September 15, 2015, 05:21:49 am »
Glad to hear you are cured Coloradogirl, Time will tell with the ache I have. It just came on so quick once I stopped taking the Harvoni. Today I go in for my blood work we shall see if it worked. Keeping my fingers crossed.
Diagnosed 2003
VL 300,000
Geno type 1 a
Start TX 4/01/15
VL 2.3 million
Tx Naive
12 wk Tx
Harvoni
Last Ultra Sound
No presents of fibrosis

Offline gidget

  • Member
  • Posts: 8
Re: 10 weeks post harvoni tx I feel like I'm walking dead
« Reply #12 on: September 15, 2015, 09:55:29 am »
Hi everyone,
I'm replying to hopefully reach someone who is farther along in treatment than I.  I am on day 8 out of 12 wk treatment with Harvoni only.  So far, mild nausea and a little insomnia, but nothing earth shaking there.  The one other issue  now presenting is abdominal pain.  It starts as a firey feeling under lower right rib, radiates around to my lower right back or radiates to my intestinal areas.  Saw my doctor yesterday and he wants to monitor this pain and perhaps check my pancreatic levels and/or sonogram for pancreatic issues.  Great :(  Anyone else had daily stomach pains.  no vomiting, though.
-gidget

Offline Snuff HEP

  • Member
  • Posts: 9
Re: 10 weeks post harvoni tx I feel like I'm walking dead
« Reply #13 on: September 17, 2015, 08:56:04 am »
Deb, I am post-tx nearly one week now. I too have experienced this hip & shoulder joint pain, which I never had to this extreme. Difficult sleep sometimes with getting comfortable. It started while on 24 week protocol and have thought it was just coincidental  with my prior Psoriatic Arthritis condition from prior clinical Peg + ribavirin treatments.

You are the first I have heard to mimic my condition to accelerated hip & shoulder joint pain.

I hope it subsides for you. Keep up the walking regiment....

Oh yes by the way. I too just went in yesterday for first 24 week post tx labs.
« Last Edit: September 17, 2015, 09:26:57 am by Snuff HEP »

Offline coloradogirl

  • Member
  • Posts: 70
Re: 10 weeks post harvoni tx I feel like I'm walking dead
« Reply #14 on: September 17, 2015, 12:44:17 pm »
I think a lot of people are having joint pain in the last couple of weeks of treatment, and even more so after treatment. I am one of those. For me, it seems to have subsided around the 14th week out. I will, however, get some bouts of joint pain, like I did yesterday. 
The treatment wasn't too bad compared to peg+rib, but I did injure my calf without a great effort during treatment. I am thankful this Harvoni treatment didn't weaken me like the last 2.
HCV 1a diag 2002
1st tx 2004 null responder
2nd tx 2010 clinical trial relapsed
Last biopsy 2010 F2-F3
Fibrosure inconclusive some parameters out of range
Abdominal Ultrasound 7/2015 - No sign of Cirrhosis
Pretreatment  vl 580,000
Started Harvoni 3/2/2015 EOT: 5/24/2015
4th week 3/27/2015 vl < 5.3 Undetected
8th week 4/23/2015 vl <5.3 Undetected
12 week EOT  5/28/2015 vl <5.3 Undetected
4wk after tx 6/26/2015 vl <5.3 Undetected
12wk after tx 8/19/2015 vl<15 Undetected!!!
I'm Cured! Yes!

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: 10 weeks post harvoni tx I feel like I'm walking dead
« Reply #15 on: September 19, 2015, 11:41:29 pm »
Don't eat too much fiber or take too many supplements or this might happen to you
I suspect that she has way too much fiber in her diet and is high on some weird vitamins of some sort!

There has got to be a better way to get over the EOT blues that we are experiencing.

Cheers
Eric

 
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline debham

  • Member
  • Posts: 68
Re: 10 weeks post harvoni tx I feel like I'm walking dead
« Reply #16 on: September 23, 2015, 12:46:30 pm »
I'm Hep C free.... darn I wish they had found a cure before I became an old lady. But I'll take what I can get. Thank God no more monkey on my back. Harvoni worked for me.  ;D
Diagnosed 2003
VL 300,000
Geno type 1 a
Start TX 4/01/15
VL 2.3 million
Tx Naive
12 wk Tx
Harvoni
Last Ultra Sound
No presents of fibrosis

Offline byebyeC

  • Member
  • Posts: 286
Re: 10 weeks post harvoni tx I feel like I'm walking dead
« Reply #17 on: September 23, 2015, 12:59:48 pm »
Oh my Mugwump! Lol!

I just CAN'T let  that happen to me...

Bahaa :D
GT 1a
VL BOT 7 M
Diagnosed 1980
Treatment naive
12 wk Viekira Pak Riba Started 9/7/15
Alaska 
Pre-treatment labs were ast 42 alt 33 vl 7,162,(eyes are light yellow now)
*Latest alt 19 ast 23! Yay! VL <15 detected

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: 10 weeks post harvoni tx I feel like I'm walking dead
« Reply #18 on: September 23, 2015, 01:22:39 pm »
I'm Hep C free.... darn I wish they had found a cure before I became an old lady. But I'll take what I can get. Thank God no more monkey on my back. Harvoni worked for me.  ;D
There I got another monkey off your back. LOL

 I think that Harvoni was actually created by the green aliens to counter the evil experiments done by the greys. I seem to remember being abducted when I was fishing one time when I was a kid in Sault Ste Marie Ontario. I guess that is why I like to fish so much!

Maybe I should ask this guy what is going on.

Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline sabre

  • Member
  • Posts: 77
Re: 10 weeks post harvoni tx I feel like I'm walking dead
« Reply #19 on: September 23, 2015, 01:58:55 pm »
Hey Deb, fantastic news and congratulations on your SVR!

By the way, I've had joint stiffness since ending Harvoni in June. My feet are the worst, especially upon waking in the morning. But, in all other regards, I feel better than I've felt in 15 years or more.

Again, congrats on your success.
Infected 1980 / Diagnosed 2008
GT 1 / Treatment naive / VL 190,000
Biopsy 2008: stage 0 grade 1
Fibroscan 2015: F2 mild fibrosis
Chronic kidney disease (due to HCV) / Proteinuria

12 weeks Harvoni began on 03/28/2015
End of treatment: 06/19/2015
Labs on 06/17/2015: Undetected
Labs on 09/21/2015: Undetected (SVR12)

 


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