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Author Topic: Hep C with cryoglobunemia  (Read 5195 times)

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Offline Salal

  • Member
  • Posts: 18
Hep C with cryoglobunemia
« on: December 28, 2017, 08:20:21 pm »
Hi, I am new to the forums, so I will introduce myself.

I have probably had Hep C since my late teens, back in the early '70s, but it didn't make me sick when I contracted it.  It just hid itself away in my body for decades.  Relative to medical advances, Hep C was only isolated fairly recently, so I could not have been tested for it, specifically, anyway.  In 2009, however, I landed in the hospital with a diagnosis of non-specified autoimmune vasculitis.  Only then was I tested for Hep C, and I was not only positive, the viral load and quantitative analysis showed it was an active case of Hep C.  But back in 2009, there wasn't a very good treatment for it, as there is today, and I wasn't treated for it.  Instead I was treated for the vasculitis, and that stopped what had been pretty aggressive progress in its tracks, though it didn't reverse any of the damage that was already done.  Just a few months ago, for the first time since 2009, I had a couple of episodes of purpura, which was one of my vasculitis symptoms.  I went to a rheumatologist who sent me for a rack of blood tests, saw the active Hep C, and thought I should be treated for it, now that there is good treatment available.  He believes that, if I am cured of the Hep C, I might not have any more flare-ups of vasculitis, which he is calling cryoglobunemia, a type of vasculitis that is closely associated with Hep C.  He referred me to a specialist in infectious diseases, who sent me for an ultra sound and a fibro scan of my liver.  I'm a 2 on the 1-4 scale for liver fibrosis, which means mild scarring.  I've been granted a Special Authority for the Hep C treatment which is very expensive.  With the Special Authority, it will be covered by my Pharmacare plan.  I'm going to the specialized clinic that actually dispenses the drugs on Jan 5, and hopefully can start the treatment soon.  At this point I do not know what drugs I will be prescribed.  Whatever is the best for Hep C genotype 1a, I guess.  It will be very helpful to me to be able to read relevant threads in these forums as I go through the treatment.  So thank you all for being here and sharing your experiences.


Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 3,669
  • Get tested, get treated, get cured, fight Hep c!
Re: Hep C with cryoglobunemia
« Reply #1 on: December 29, 2017, 01:14:22 am »
Hi and welcome

I have heard cryoglobunemia is a not uncommon extrahepatic symptom of hep c. I am not personally familiar but hopefully with cure your cryoglobunemia may improve with time. Also per the AASLD guidelines those with less than F3 fibrosis should be able to return to a normal follow up the same as anyone who never had hep c. Your liver may be able to improve and become less scared with time.

I was likely infected in 1978 and I was diagnosed in 1990 when I donated blood and antibody testing was first available. I never knew I was infected for those 12 years as like for most people hep c is a silent illness with the majority of people infected not knowing they are infected.

There really is only active hep c. They used to say active or inactive back in the day. About 25% of people test positive for antibodies but were able to beat the virus without treatment so they will test negative for the actual virus. But once exposed they will always test positive for antibodies to hep c as will all who were treated and cured. We will be not detected for the virus but always positive for hep c antibodies because we were previously infected.

If you are prescribed Harvoni they have a copay assistance program that may make your refill cost to you as low as $5 if you qualify. There are many other new meds and all are very effective one was just approved last August.

For all the new generation DAA meds most folks here suggest keeping yourself properly hydrated with the old 8 each 8 ounce glasses of fluids a day or just a bit more that really we all should be drinking anyway. Several of the meds have the side effect of headache and keeping hydrated seems to help.

Some of the meds have very specific instructions for heartburn medicines like Prilosec, Pepsid, and even Tums. So if you do take antacids you should let your doctor know.

Anyway again welcome best of luck with treatment. Let us know if you have any questions and we will try to help and let us know how it is going.
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 KimInTheForest

  • Member
  • Posts: 1,870
  • Believe in yourself
Re: Hep C with cryoglobunemia
« Reply #2 on: December 29, 2017, 11:58:15 am »
Welcome Salal! And good luck on your treatment journey. Let us know how it's going and what drug(s) they put you on.

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 Salal

  • Member
  • Posts: 18
Re: Hep C with cryoglobunemia
« Reply #3 on: December 29, 2017, 01:08:01 pm »
Thanks for the welcome, Lynn and Kim (hey, Kim - I live south of you on the Island!)

I have now remembered that the specialist in infectious diseases did tell me which drug he would be prescribing.  It's supposed to be one that will not interact with other medications I am on, it's called Zepatier.  I hope it works as well for me as Harvoni worked for you.

Offline KimInTheForest

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  • Posts: 1,870
  • Believe in yourself
Re: Hep C with cryoglobunemia
« Reply #4 on: December 29, 2017, 01:40:47 pm »
Excellent Salal! Good luck. Stay well hydrated while on treatment. That helps reduce any side effects, should you  have any (which you may 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 Lynn K

  • Global Moderator
  • Member
  • Posts: 3,669
  • Get tested, get treated, get cured, fight Hep c!
Re: Hep C with cryoglobunemia
« Reply #5 on: December 29, 2017, 07:02:34 pm »
Good luck with the Zepatier. I read on the FDA press release that SVR rates in clinical trials were 94-97% for genotype 1 sounds like good stuff!

https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm483828.htm
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!

 


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