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Hepatitis C and cryoglobulinaemia 7 years 10 months ago #17006
Does anyone please know anything about cryoglobulinaemia? There is some discussion of this on hepmag but it's a bit inconclusive. The medical literature suggests that anywhere between one third and almost a half of all chronic hepatitis c sufferers have cryoglobulinaemia. Given this is a large proportion it seems a surprisingly under-discussed and under-tested for condition. Doctors are mostly of the view that any cryoglobulins resulting from hepatitis c will be cleared by the disappearance of the hep c virus on achieving SVR. Is there any authoritative research to support this view that clearance of the hep c virus also clears any cryoglobulins? The test for cryoglobulinaemia requires special handling of the blood sample which not all labs may have the relevant experience to do. So any advice as to how to get a reliable, and preferably affordable, cryo test done will be much appreciated. Many thanks in advance for any help on this. 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 | |
Hepatitis C and cryoglobulinaemia 7 years 10 months ago #17007
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!!! | |
Hepatitis C and cryoglobulinaemia 7 years 10 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 | |
Hepatitis C and cryoglobulinaemia 7 years 10 months ago #17010
This long term study seems to indicate that SVR is a good predictor of resolution of cryoglobulinemia.
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 | |
Hepatitis C and cryoglobulinaemia 7 years 10 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 | |
Hepatitis C and cryoglobulinaemia 7 years 10 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 | |
Hepatitis C and cryoglobulinaemia 7 years 10 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 |
Hepatitis C and cryoglobulinaemia 7 years 10 months ago #17056
There is something called cryoglobulinemia vasculitis that can cause ulcers and affect the kidneys. P. | |
Hepatitis C and cryoglobulinaemia 7 years 10 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!!! | |
Hepatitis C and cryoglobulinaemia 7 years 10 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 | |
Hepatitis C and cryoglobulinaemia 7 years 10 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. | |
Hepatitis C and cryoglobulinaemia 7 years 10 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 |
Hepatitis C and cryoglobulinaemia 7 years 10 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. 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 The following user(s) said Thank You: pat1, cowboyjavajoe | |
Hepatitis C and cryoglobulinaemia 7 years 10 months ago #17087
Thanks Gaj 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. 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 | |
Hepatitis C and cryoglobulinaemia 7 years 10 months ago #17090
I don't think there's any data on dialysis patients. P. The following user(s) said Thank You: cowboyjavajoe | |
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