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Author Topic: Hep C with cryoglobunemia  (Read 6610 times)

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Offline Salal

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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

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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

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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

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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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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

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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!

Offline Salal

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  • Posts: 32
Re: Hep C with cryoglobunemia
« Reply #6 on: May 25, 2018, 11:56:08 am »
Well, drat.  I finished my 12-week course of treatment on April 9, and now in the last week of May, I once again have a flare of purpura.  I had the Hep C treatment because my rheumatologist believed HCV was the underlying cause of the vasculitis, and if I was cured of HCV, I wouldn't get the flares.  So what does the flare mean?  Does it mean I am not cured of HCV? And if so, does it mean I am one of the <5% who doesn't respond to a particular DAA, and have to go through another course of treatment with a different DAA?  I am stuck in this cloud of unknowing.  I don't even know if the HCV and the vasculitis really are related or not.

Offline Lynn K

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Re: Hep C with cryoglobunemia
« Reply #7 on: May 25, 2018, 12:35:13 pm »
Found this about purpura seems hep c can cause it but there are other causes as well. I am thinking even if hep c is the cause it may take time for your body to return to normal after infection. As purpura can be associated with low platelet counts I’m just wondering if you have advanced liver disease with a low platelet count? If that is the case even with cure of hep c if you have advanced liver damage and low platelet count curing hep c does not change that immediately. People with advanced liver damage may heal with time. I have read for those like myself with liver cirrhosis there is about a 50/50 chance of regression of liver damage. So far three years after treatment I still have a low platelet count up a little from pre treatment but still well below normal.

The best indication of relapse is an increase in liver enzyme tests to above normal.

Best of luck hope you find release from your symptoms

Here is what I found about purpura:

“What causes purpura?

There are two kinds of purpura: nonthrombocytopenic and thrombocytopenic. Nonthrombocytopenic means that you have normal platelet levels in your blood. Thrombocytopenic means that you have a lower than normal platelet count.

The following could cause nonthrombocytopenic purpura:

disorders that affect blood clotting
certain congenital disorders, present at or before birth, such as telangiectasia (fragile skin and connective tissue) or Ehlers-Danlos syndrome
certain medications, including steroids and those that affect platelet function
weak blood vessels
inflammation in the blood vessels
scurvy, or a severe lack of vitamin C
The following could cause thrombocytopenic purpura:

medications that prevent platelets from forming or that interfere with normal clotting
drugs that cause the body to launch an immune reaction against platelets
recent blood transfusions
immune disorders such as idiopathic thrombocytopenic purpura
an infection in the bloodstream
infection by HIV or Hepatitis C, or some viral infections (Epstein-Barr, rubella, cytomegalovirus)
Rocky Mountain spotted fever (from a tick bite)
systemic lupus erythematous”
« Last Edit: May 25, 2018, 12:36:45 pm by Lynn K »
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 Salal

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Re: Hep C with cryoglobunemia
« Reply #8 on: May 25, 2018, 01:36:20 pm »
My platelet count is high, and trending higher with this second batch of blood tests (with normal range 150-400, I was 467 a week ago and 519 yesterday). Also have a very high C-reactive protein and very high rheumatoid factor. Am still waiting on the ANA result.  The purpura is directly related to the autoimmune vasculitis, along with neuropathy and neuritis in my extremities.  It's just that HCV can be the underlying cause of vasculitis itself.

Also, I was only F2 on my fibroscan a few months ago, and my liver enzymes are all within range.  So I don't think cirrhosis is an issue.

I guess things are just going to be muddy for a while.  Until I find out my status with HCV, in late September, and hopefully learn I am cured.  Then if I continue to get flares of vasculitis symptoms, it will start to look like the vasculitis is a thing in itself, unrelated to HCV, in my case and I will pressure my rheumatologist to treat me for the autoimmune vasculitis itself.  It is a life-threatening disease in its own right, with most of the danger lying in kidney failure, but so far it looks like my kidneys are fine.

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Hep C with cryoglobunemia
« Reply #9 on: May 25, 2018, 02:29:57 pm »
Yeah I am thinking it may be unrelated to hep c.

I found this about elevated platelet count and am wondering if that could be related.

https://www.mayoclinic.org/diseases-conditions/thrombocytosis/symptoms-causes/syc-20378315

I just wanted to add, liver enzymes do not correlate extent or even the existence of liver damage. Elevated liver enzymes indicate something is currently injuring the liver like a current hep c infection, excess alcohol consumption or other causes.

My hep c was cured three years ago and because of that my enzymes are all in normal range. My only abnormal test is platelets at 110 as a symptom in my ongoing cirrhosis and portal hypertension. You can have extensive liver damage and normal enzymes as long as nothing currently is injuring the liver.

Best of luck
« Last Edit: May 25, 2018, 02:33:43 pm by Lynn K »
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 Salal

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Re: Hep C with cryoglobunemia
« Reply #10 on: May 25, 2018, 03:56:59 pm »
Thanks for the link, Lynn.  Looks to me like my high platelet count is the reactive variety, and the probably cause is inflammation. I have lots of other indicators of inflammation in the blood test results.

Offline Salal

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Re: Hep C with cryoglobunemia
« Reply #11 on: October 14, 2018, 12:52:20 pm »
Finally got the results of my 24-week post-treatment HCV RNA test. Undetected. Yay! Nice to put that in the past.

Offline Lynn K

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  • Posts: 3,951
  • Get tested, get treated, get cured, fight Hep c!
Re: Hep C with cryoglobunemia
« Reply #12 on: October 14, 2018, 02:59:20 pm »
All right! Congrats to you!!!
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

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Re: Hep C with cryoglobunemia
« Reply #13 on: October 14, 2018, 04:34:31 pm »
Congrats Salal! It's a wonderful feeling, for sure!

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

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Re: Hep C with cryoglobunemia
« Reply #14 on: October 14, 2018, 05:37:33 pm »
Looking at Lynn's footnotes, I see a fibroscan at 44 weeks post-treatment. Would I have to have one if I was only mild liver fibrosis prior to treatment?

Offline Lynn K

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Re: Hep C with cryoglobunemia
« Reply #15 on: October 14, 2018, 06:10:23 pm »
Hi Salal

Only if you want to. They say those who are cured of hep c and were F2 or less can go about their lives as though they were never infected. No further liver follow up is recommended per the AASLD (American Association for the Study of Liver Diseases)

I was diagnosed with liver cirrhosis in January 2008. My pre-treatment Fibroscan was 27. I am thinking about asking to do a 4 year post treatment Fibroscan to see if there has been any improvement in my liver. So far there have been no signs of regression for me. My platelet count went up a little post treatment from about 90 to around 110 but still well below normal of 150 indicating I have portal hypertension a sign I still have liver damage.
« Last Edit: October 15, 2018, 12:40:37 am by Lynn K »
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 lporterrn

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Re: Hep C with cryoglobunemia
« Reply #16 on: October 14, 2018, 08:18:06 pm »
Thank you for letting us know. Enjoy the freedom!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Salal

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  • Posts: 32
Re: Hep C with cryoglobunemia
« Reply #17 on: October 14, 2018, 11:19:26 pm »
Well, I will continue to check in here from time to time and see if I can contribute a little like those of you who have successfully completed treatment do  :)

 


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