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Author Topic: Burning sensation after harvoni.  (Read 1498 times)

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Offline Mikey87

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  • Posts: 14
Burning sensation after harvoni.
« on: May 02, 2018, 10:50:47 pm »
hello all, I'm coming up to the 3 month mark after harvoni on the 16th of this month. all through out treatment I've had on and off this burning sensation on the front of my legs and arms and has now started to affect my feet and hands, the best way to describe it would be like a sunburn mixed with dry skin and also the rest of my body feels hot to the touch to me as if I have a fever. Has anyone else had this? I'm in the process of seeing a new primary care doctor as my current one has left out of state, and my liver specialist has no idea what it could be, I have been to a neurologist and pass the sensory tests so I'm really at a loss and feel so alone, any advice would be very much appreciated!

Offline Type0Negative

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  • Posts: 42
Re: Burning sensation after harvoni.
« Reply #1 on: May 03, 2018, 11:44:40 pm »
I had it frequently before treatment. If this is the same thing, it called "Palma erythema". Look it up. It common with Hep C and Cirrhosis, but can be result of elevated estrogen. I always thought it was allergic in nature. 

Offline Mikey87

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  • Posts: 14
Re: Burning sensation after harvoni.
« Reply #2 on: May 04, 2018, 11:47:46 am »
Hey thanks for the reply, I looked it up and unfortunately that's not what I am experiencing, what I feel is mostly on the front of my legs and arms and feels like a sunburn but also my body feels hot when I touch it like I have a fever.

Offline Ella

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  • Posts: 33
Re: Burning sensation after harvoni.
« Reply #3 on: May 04, 2018, 09:07:17 pm »
Hi Mikey,

I have something like this. It started during treatment on Epclusa. I'm at almost 24 weeks post.

Mine is mostly on my upper body, and while I feel like I have a sunburn, my skin feels cool to the touch. I feel super thirsty and dry all the time, though. My feet also burn. I do not have diabetes.

My doctor is doing some research on this for my upcoming annual in July. I'm getting tested for autoimmune issues including celiac. She also said a B12 deficiency can cause it. I've also read of celiac patients complaining about it.

When my doc mentioned B12, I started supplementing sublingually right away. I also changed deoderants from a really strong aluminum to about half strength, because lately I've been getting the burning in my armpits. The burning got better immediately. However, today it is bad, and my digestive system is also inflamed, but I don't know if that's related.

I'll definitely post on this thread if I find out anything from my doctor and with my testing!
« Last Edit: May 04, 2018, 09:14:12 pm by Ella »
Pretreatment: Genotype 3A; Fibrosure F1-F2; VL 2.8M; ALT 93; AST 76
Began treatment Sept 1 2017
4 weeks (Oct 2): ALT 29; AST 20; VL Not done
8 weeks: ALT 58 (6-29); AST 36 (10-35); VL <15 IU/ml DETECTED
EOT + 5 days: Fibrosure F0-F1; ALT 32 (6-29); VL NOT DETECTED :D
EOT + 8 weeks: ALT 17 (6-29); AST 16 (10-35); VL not done
EOT + 12 weeks: VL NOT DETECTED = SVR12 :D :D
EOT + 24 weeks: VL NOT DETECTED = SVR24 I'm DONE! :D :D :D

Offline Mikey87

  • Member
  • Posts: 14
Re: Burning sensation after harvoni.
« Reply #4 on: May 05, 2018, 02:08:14 pm »
Thanks Ella we def have some things in common and hope we can overcome this soon, i've been doing the b12 since treatment and for a while it worked or so I thought , i've seen a bunch of doctors too and they just want to throw pain meds at me  :-\ hopefully we get some answers soon, if I find out soon I will def let you know!

Offline Ella

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  • Posts: 33
Re: Burning sensation after harvoni.
« Reply #5 on: May 05, 2018, 02:56:12 pm »
Pain meds? Wow, yours must be worse than mine. What meds have you tried?

Mine can get pretty uncomfortable on occasion, but at most I would say mine can be like a level 6-7 sunburn. (I grew up in Florida, so level 10 to me is completely blistered, swollen, can't get out of bed sunburned.) I've tried msm cream, aspercreme, and cortisone cream, but they didn't help. I think ice packs, ibuprofen, and cold showers work the best for me. At least so far.

I should mention, I had the burning feet and thirst before treatment. And since about four years ago, I don't sweat. I've wondered if it is an autonomic nervous system dysfunction, so I'm interested to see that you've been to a neurologist. That is a specialist I was considering if my upcoming testing finds nothing.
Pretreatment: Genotype 3A; Fibrosure F1-F2; VL 2.8M; ALT 93; AST 76
Began treatment Sept 1 2017
4 weeks (Oct 2): ALT 29; AST 20; VL Not done
8 weeks: ALT 58 (6-29); AST 36 (10-35); VL <15 IU/ml DETECTED
EOT + 5 days: Fibrosure F0-F1; ALT 32 (6-29); VL NOT DETECTED :D
EOT + 8 weeks: ALT 17 (6-29); AST 16 (10-35); VL not done
EOT + 12 weeks: VL NOT DETECTED = SVR12 :D :D
EOT + 24 weeks: VL NOT DETECTED = SVR24 I'm DONE! :D :D :D

Offline Mikey87

  • Member
  • Posts: 14
Re: Burning sensation after harvoni.
« Reply #6 on: May 05, 2018, 06:01:07 pm »
Yeah that's all they can offer me because they don't know what it is, they want me to take something they give to people with nerve and shingles pain to help me sleep at night but I decline, my pain is around 6/7 too it keeps me up at night. I think the neurologist doesn't think it's neuropothy because for me this comes and goes I can go days and even a week or 2 without feeling the burning so it's really weird.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 3,717
  • Get tested, get treated, get cured, fight Hep c!
Re: Burning sensation after harvoni.
« Reply #7 on: May 05, 2018, 08:33:50 pm »
All I can say is I treated 3 times in the past with interferon based meds treated with Sovaldi and Olysio for 12 weeks but relapsed then treated with Harvoni for 24 weeks with ribavirin.

Three years post treatment today the only symptoms are being 60 with cirrhosis for 10 years.

Hope you find relief
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 Mikey87

  • Member
  • Posts: 14
Re: Burning sensation after harvoni.
« Reply #8 on: May 05, 2018, 09:53:41 pm »
So sorry you had to.go through all of that Lynn, i'm hoping as time passes this will go away, I'm thankful for the treatment to get my life back but at 31 I've never had any of these symptoms  before treatment and know no one who has gone through this so it's a bit lonely and scary for me.

Offline Mikey87

  • Member
  • Posts: 14
Re: Burning sensation after harvoni.
« Reply #9 on: May 08, 2018, 09:14:30 pm »
Hey Ella a nurse in a support group that I am in mentioned " Complex regional pain syndrome " the symptoms sound like the ones we are having so maybe bring it up at your next appointment .

Offline Ella

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  • Posts: 33
Re: Burning sensation after harvoni.
« Reply #10 on: May 08, 2018, 10:31:30 pm »
Thanks, Mikey.

I'm familiar with CRPS because a friend was diagnosed with it. I don't think that's what I have. I am getting a whole battery of autoimmune tests done tomorrow and will let you know if anything turns up.
Pretreatment: Genotype 3A; Fibrosure F1-F2; VL 2.8M; ALT 93; AST 76
Began treatment Sept 1 2017
4 weeks (Oct 2): ALT 29; AST 20; VL Not done
8 weeks: ALT 58 (6-29); AST 36 (10-35); VL <15 IU/ml DETECTED
EOT + 5 days: Fibrosure F0-F1; ALT 32 (6-29); VL NOT DETECTED :D
EOT + 8 weeks: ALT 17 (6-29); AST 16 (10-35); VL not done
EOT + 12 weeks: VL NOT DETECTED = SVR12 :D :D
EOT + 24 weeks: VL NOT DETECTED = SVR24 I'm DONE! :D :D :D

Offline Mikey87

  • Member
  • Posts: 14
Re: Burning sensation after harvoni.
« Reply #11 on: May 08, 2018, 11:03:20 pm »
Oh ok, best of luck tomorrow Ella !

Offline Ella

  • Member
  • Posts: 33
Re: Burning sensation after harvoni.
« Reply #12 on: May 16, 2018, 09:58:17 pm »
Hey Mikey,

I got my autoimmune test results, and they are all normal, so it's not autoimmune in my case.

Meanwhile, my burning is much reduced since I started taking B12.

Hope you're feeling better.

~Ella
Pretreatment: Genotype 3A; Fibrosure F1-F2; VL 2.8M; ALT 93; AST 76
Began treatment Sept 1 2017
4 weeks (Oct 2): ALT 29; AST 20; VL Not done
8 weeks: ALT 58 (6-29); AST 36 (10-35); VL <15 IU/ml DETECTED
EOT + 5 days: Fibrosure F0-F1; ALT 32 (6-29); VL NOT DETECTED :D
EOT + 8 weeks: ALT 17 (6-29); AST 16 (10-35); VL not done
EOT + 12 weeks: VL NOT DETECTED = SVR12 :D :D
EOT + 24 weeks: VL NOT DETECTED = SVR24 I'm DONE! :D :D :D

Offline Mikey87

  • Member
  • Posts: 14
Re: Burning sensation after harvoni.
« Reply #13 on: May 17, 2018, 03:42:36 pm »
Awesome news Ella! mine has gone away yet again, seen a new doctor and they think it should go away with time, great to hear from you!

 


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