emo Hepatitis C and cryoglobulinaemia

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6 years 2 months ago #17007

Thank you for the above post.

en.wikipedia.org/wiki/Cryoglobulinemia


Failed Interferon 96', G1a, VL = 9 - 5.5 Million, F3/A3, AST 111, ALT 190, Generic DAA treatment Sof/Led (Mylan - India MYHEP LVIR) - 8 June, 2016
2 Week Results 20 June, 2016 AST 19, ALT 32
4 Week Results 06 July, 2016 AST 22, ALT 30, VL = 35
6 Week Results 20, July 2016 VL only = HCV RNA Detected, Non-Quantifiable <15
8 Week Results 04 August 2016, Labs, LFTs Normal, VL = UND
12 Week Results 31 August, 2016 LFTs Normal, VL = UND
EOT + 4 Weeks, LFTs Normal, VL = UND, "SVR4"
SVR12, 21 Nov 2016. CURED!!!
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6 years 2 months ago #17008

And, thank you, Fitz, for posting the link.


Male Geno 1a F3-4 Tx Naive
Contracted early 1970s Diagnosed 2012
Started 12 wks TWINVIR (Sof/Led) on 15 Nov 2015
Pre-treatment VL 1.8 million
UND at 8 Dec 2015; UND at 12 Jan 2016
Ended 12 wks TWINVIR on 6 Feb 2016
9 Feb 2016 EOT VL test <15 PCR Negative
UND at 3 May 2016 SVR12
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6 years 2 months ago #17010

This long term study seems to indicate that SVR is a good predictor of resolution of cryoglobulinemia.

In our study, the majority of patients with MCS who reached SVR also experienced a complete and persistent clinical-immunological response according to the study criteria. All symptoms and laboratory alterations (i.e., cryocrit, rheumatoid factor, C4 consumption) disappeared in most of the MCS-SVR patients; the remaining MCS patients had only isolated symptoms (i.e., sicca syndrome, peripheral paresthesia, arthralgia) and/or laboratory data altered, although improved compared to baseline. Only two MCS-SVR patients (3%) maintained a definite syndrome according to the established criteria,[23] although all the clinical manifestations improved compared to initial symptoms.

natap.org/2015/HCV/041515_04.htm


G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
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6 years 2 months ago #17025

Thanks for your post Thurl
The topic is of interest to me and as you state, the subject does not appear to be discussed often or with clarity for me anyway. The word itself frightens me! I am now svr12 and I am mindful of allowing time for healing since completing Tx. I have noticed a return of some recurring joint pain this week. My clinic apt is scheduled for next week and I was hoping to ask some questions about cryoglobulinaemia. Here is another link
mobile.aidsmap.com/Direct-acting-antivir...titis-C/page/3036166


gt 1a VL 6m
F2/3 FibroScan - 9KPa in 2011 and 7KPa in 2015
sof/dac 10 December for 12 weeks
pre tx alt 85 ast 51
4 wk alt 34 ast 31 UND <35
8 wk alt 29 ast 32 UND <15
12wk alt 25 ast 25 EOT 3.3.16
SVR24 UND KPa5.3 F0 in normal range
I am well
.forever grateful to fixhepc
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6 years 2 months ago #17034

Hi Pat,

Thank you very much for your post and for the link to the article. The article you posted, and the one Gaj posted, do offer some reassurance. The message from both seems to be the same: clearing the hep c virus does in most cases clear all or most of the symptoms of cryo. But while that is good it's obviously not as good as clearing cryo completely in all cases. So I think I still want to get tested.

The word is scary and the photo on wikipedia even more so, but luckily I don't have anything as bad as that. The difficulty in trying to diagnose it from symptoms is that cryo can be asymptomatic and even when symptoms are present they are often vague and elusive.

My symptoms are mild - some bad rashes, but on the face not the lower legs; poor circulation in the hands and feet; and some joint and abdominal pain. Possibly, or even probably, they are not connected with cryoglobulinaemia at all. Nevertheless, after 4 decades or more of hep c infection I'm not taking anything for granted and I would like to have a cryo blood test just to exclude it.

I'll ask my GP for a cryo test but I think he may say no or want to refer me to the local hospital hepatology department first. The latter don't always agree to what I ask for so I may end up having to do the test privately.


Male Geno 1a F3-4 Tx Naive
Contracted early 1970s Diagnosed 2012
Started 12 wks TWINVIR (Sof/Led) on 15 Nov 2015
Pre-treatment VL 1.8 million
UND at 8 Dec 2015; UND at 12 Jan 2016
Ended 12 wks TWINVIR on 6 Feb 2016
9 Feb 2016 EOT VL test <15 PCR Negative
UND at 3 May 2016 SVR12
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6 years 2 months ago #17040

I was so excited to discover this disorder during our research trying to find a way to obtain the meds.....and will ask our doc about it at our next appointment.....Joe has had a finger amputation, a surgery to improve blood flow, and has been through hyperbarics twice and nobody has ever mentioned this disorder....they even revised his dialysis access thinking it was Steal Syndrome, but then it started on the other hand. It flares very suddenly, always in the cold months - it begins with a little blood blisters, and then the fingertip suddenly turns dark and just dies.... They have managed to save a couple of fingers with hyperbarics. They just keep saying it's diabetes, but his A1C was 4.5 with no meds at the time....and you don't just wake up one day and a finger that was perfectly normal the day before is now feeling like a car door just slammed shut on it....never made sense...this has been extremely debilitating for him for the last 2 years....life without useable fingers isn't much fun...please God let this go away too.....


GT 1b
Diagnosed 2014
tx naive
alt 309
ast 174
fibrotest 0.73 (f3/f4)
acti test 0.93 A3
VL 14,660,000+ (Jan 2016)
Started Harvoni 5/16/16
5/31/16 VL 239
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6 years 2 months ago #17056

cowboyjavajoe wrote:

I was so excited to discover this disorder during our research trying to find a way to obtain the meds.....and will ask our doc about it at our next appointment.....Joe has had a finger amputation, a surgery to improve blood flow, and has been through hyperbarics twice and nobody has ever mentioned this disorder....they even revised his dialysis access thinking it was Steal Syndrome, but then it started on the other hand. It flares very suddenly, always in the cold months - it begins with a little blood blisters, and then the fingertip suddenly turns dark and just dies.... They have managed to save a couple of fingers with hyperbarics. They just keep saying it's diabetes, but his A1C was 4.5 with no meds at the time....and you don't just wake up one day and a finger that was perfectly normal the day before is now feeling like a car door just slammed shut on it....never made sense...this has been extremely debilitating for him for the last 2 years....life without useable fingers isn't much fun...please God let this go away too.....

There is something called cryoglobulinemia vasculitis that can cause ulcers and affect the kidneys.

P.

Last Edit: 6 years 2 months ago by Price.
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6 years 2 months ago #17060

TY for the link, Price. More on vasculitis here: www.vasculitisfoundation.org/education/forms/cryoglobulinemia/


Failed Interferon 96', G1a, VL = 9 - 5.5 Million, F3/A3, AST 111, ALT 190, Generic DAA treatment Sof/Led (Mylan - India MYHEP LVIR) - 8 June, 2016
2 Week Results 20 June, 2016 AST 19, ALT 32
4 Week Results 06 July, 2016 AST 22, ALT 30, VL = 35
6 Week Results 20, July 2016 VL only = HCV RNA Detected, Non-Quantifiable <15
8 Week Results 04 August 2016, Labs, LFTs Normal, VL = UND
12 Week Results 31 August, 2016 LFTs Normal, VL = UND
EOT + 4 Weeks, LFTs Normal, VL = UND, "SVR4"
SVR12, 21 Nov 2016. CURED!!!
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6 years 2 months ago #17062

Thank you Thurl, Gaj, Fitz, Cowboy and Price
I agree with your last post Thurl, I have symptoms still that may be related, may not be related. They are aching legs and joints etc. my full blood count is mostly in range. These symptoms only reappeared very recently and with the onset of our southern winter the overnight temperature can be 0 degrees.

I copied some extra info from www.nlm.nih.gov/medlineplus/ency/article/000540.htm
Exams and Tests
The health care provider will do a physical exam. You will be checked for signs of liver and spleen swelling.
Tests for cryoglobulinemia include:
Complete blood count (CBC)
Complement assay -- numbers will be low
Cryoglobulin test -- may show presence of cryoglobulins (It is a good idea to check to make sure the lab has experience drawing and storing blood for this test.)
Liver function tests -- may be high if hepatitis C is present
Rheumatoid factor -- positive in types II and III
Skin biopsy -- may show inflammation in blood vessels, vasculitis
Protein electrophoresis - blood -- may show an abnormal antibody protein
Urinalysis -- may show blood in the urine if the kidneys are affected
Other tests may include:
Angiogram
Chest x-ray
ESR
Hepatitis C test
Nerve conduction tests, if the person has weakness in the arms or legs


gt 1a VL 6m
F2/3 FibroScan - 9KPa in 2011 and 7KPa in 2015
sof/dac 10 December for 12 weeks
pre tx alt 85 ast 51
4 wk alt 34 ast 31 UND <35
8 wk alt 29 ast 32 UND <15
12wk alt 25 ast 25 EOT 3.3.16
SVR24 UND KPa5.3 F0 in normal range
I am well
.forever grateful to fixhepc
Last Edit: 6 years 2 months ago by pat1.
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6 years 2 months ago #17064

HCV core protein has a direct effect on the cold-precipitation process (so the higher the viral load the more precipitins). So it makes sense that getting rid of the viral load would eliminate the cryo.

www.ncbi.nlm.nih.gov/pubmed/24636026


Here's some data on HCV cryo patients treated with DAAs.

www.ncbi.nlm.nih.gov/pubmed/26474537

(*Please note the study talks about patients with "reduced kidney function" but not dialysis patients).

P.

Last Edit: 6 years 2 months ago by Price.
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6 years 2 months ago #17071

It seems like there are lots of unknowns....the nih abstracts are over my head for the most part....I guess we will just have to wait to see if his condition improves after his treatment.....I'm just hoping his hands will get well enough to take fish off the hook again!
---MsJoe


GT 1b
Diagnosed 2014
tx naive
alt 309
ast 174
fibrotest 0.73 (f3/f4)
acti test 0.93 A3
VL 14,660,000+ (Jan 2016)
Started Harvoni 5/16/16
5/31/16 VL 239
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6 years 2 months ago #17082

A quick summary of the actual patient studies in those abstracts is that for those who previously had clinically proven Cryoglobulinema and achieved SVR:

40/75 (56%) had all symptoms disappear and no clinical evidence remaining.
31/75 or (38%) had many/most symptoms disappear and very little/no clinical evidence.
4/75 or (6%) still had symptoms and tested positive for clinical evidence but were "improved compared to initial symptoms."

Which suggests that after Joe reaches SVR he has an excellent chance of improving to where he will be able to remove the fish hooks himself.....which is very important for us anglers. :lol:


G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
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6 years 2 months ago #17087

Thanks Gaj #flower
After reading the links I have come to a similar conclusion. I researched this subject before taking DAA's and thought at the time that I needed to focus on only one thing at a time. :+1: First of all I had to complete Tx that has fortunately resulted in a status of SVR12 for me. Now I need to allow time for recovery and healing. :) However, I do like to be informed as well as hopeful. #duck #duck #duck


gt 1a VL 6m
F2/3 FibroScan - 9KPa in 2011 and 7KPa in 2015
sof/dac 10 December for 12 weeks
pre tx alt 85 ast 51
4 wk alt 34 ast 31 UND <35
8 wk alt 29 ast 32 UND <15
12wk alt 25 ast 25 EOT 3.3.16
SVR24 UND KPa5.3 F0 in normal range
I am well
.forever grateful to fixhepc
Last Edit: 6 years 2 months ago by pat1.
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6 years 2 months ago #17090

I don't think there's any data on dialysis patients.

P.

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6 years 2 months ago #17104

Thanks to a HepC positive organ donor last year, he is no longer on dialysis and is now getting treatment. Things are looking up - if the hands get well too, life will really be good again. Time will tell. The same hands that go fishing should also be able to wash a few dishes!--MsJoe


GT 1b
Diagnosed 2014
tx naive
alt 309
ast 174
fibrotest 0.73 (f3/f4)
acti test 0.93 A3
VL 14,660,000+ (Jan 2016)
Started Harvoni 5/16/16
5/31/16 VL 239
Last Edit: 6 years 2 months ago by cowboyjavajoe. Reason: grammar
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