Hep C Discussion Forum

Tig · Admin

RE: Help for cryoglobulinemia symptoms?

Canuck · Guru

About HCV-associated cryoglobulinemia vasculitis resolution with SVR - at 36 weeks SVR, patients were found to have cryglobulins decrease significantly, and 50% of these patients had NO cryoglobulins.

Gastroenterology - Journal Scan / Research · July 27, 2017

TAKE-HOME MESSAGE

In this prospective, multicenter trial, direct-acting antivirals were assessed in the treatment of HCV-associated cryoglobulinemia vasculitis. In total, 37 patients (90.2%) had a complete clinical response after 12 weeks. At week 36, cryoglobulin levels decreased from 0.56 to 0.21, and 50% of patients had undetectable cryoglobulin levels.
In a small study of 41 patients with HCV-associated cryoglobulinemia, direct-acting antiviral therapy was effective at reducing serum cryoglobulin levels and nearly eliminating organ effects of cryoglobulinemia. - Eric Kallwitz, MD

Abstract

Circulating mixed cryoglobulins are detected in 40%-60% of patients with hepatitis C virus (HCV) infection, and overt cryoglobulinemia vasculitis (CryoVas) develops in approximately 15% of patients. Remission of vasculitis has been associated with viral clearance, but few studies have reported the effectiveness of direct-acting antiviral drugs in these patients. We performed an open-label, prospective, multicenter study of the effectiveness and tolerance of an all-oral, interferon- and ribavirin-free regimen of sofosbuvir plus daclatasvir in patients with HCV-associated CryoVas. Forty-one consecutive patients with active HCV-associated CryoVas (median age, 56 y; 53.6% women) were recruited from hospitals in Paris, France, from 2014 through 2016. They received sofosbuvir (400 mg/day) plus daclatasvir (60 mg/day) for 12 weeks (n = 32) or 24 weeks (n = 9), and were evaluated every 4 weeks until week 24 and at week 36. Blood samples were analyzed for complete blood count, serum chemistry profile, level of alanine aminotransferase, rheumatoid factor activity, C4 fraction of complement, and cryoglobulin; peripheral blood mononuclear cells were isolated for flow cytometry analysis. Thirty-seven patients (90.2%) had a complete clinical response (defined by improvement of all the affected organs involved at baseline and no clinical relapse) after a median time of 12 weeks of therapy; all had a sustained virologic response (no detectable serum HCV RNA 12 weeks after the end of antiviral therapy). Patients' mean cryoglobulin level decreased from 0.56 ± 0.18 at baseline to 0.21 ± 0.14 g/L at week 36, and no cryoglobulin was detected in 50% of patients at this time point. After antiviral therapy, patients had increased numbers of T-regulatory cells, IgM+CD21-/low-memory B cells, CD4+CXCR5+ interleukin 21+ cells, and T-helper 17 cells, compared with before therapy. After a median follow-up period of 26 months (interquartile range, 20-30 mo), no patients had a serious adverse event or relapse of vasculitis.

SwimmerChic · Member

That's what I was afraid of, from what I've read although the info I've found cryo on the internet seems to be particularly old. Blast. I was really hoping for something (anything) that would make dealing with this bearable until I can get the hcv dealt with.

Thanks for your response. I appreciate you taking time to respond.

mallani · Guru

Hi SwimmerChic,

Mixed cryoglobulinaemia is common in chronic HepC. Severity and symptoms vary from patient to patient. Treating the HepC and obtaining SVR is the only sure way of reducing the excess cryoglobulins. Prednisone is now thought to make symptoms worse, and in any case, this can't be taken with HCV treatment. There's not a lot you can do. You obviously try to avoid the cold. Maybe the rheumatologist has some new answers. Good luck.

SwimmerChic · Member

Hopefully, I'm posting this in the right section.

In cold weather (half the time where I live), I have symptoms my primary care physician calls vasculitis. Purpura starting in the feet and working up the legs (has been everywhere except my head, face, and hands at one time or another), fluid retention in my legs (and sometimes in my hands too) difficulty breathing (peak flow ~ 200-250), low grade fever, & general feeling like crud. After journalling, the triggers I've found are pretty typical...cold weather and stress.

He sent me to a dermatologist, who discovered the hep c and bailed on seeing me again. So I tried a different derm who discovered the hep c and wouldn't even examine me but told me to go to a rheumatologist, who wouldn't see me because my primary care physician didn't make the referral. Waited 5 months to get into the GI doc who wants to wait to treat me (my follow up is May 31, but that's my take on what he said at our first meeting given my initial work up and the results of my current blood work). He did refer me to a rheumatologist and I have that appointment in about 3 weeks.

While I'm waiting for the hep c treatment, does anyone have experience with cryoglobulinemia symptoms and more specifically its treatment? Everyone but me and the first dermo I saw apparently despises prednisone. If that is out, is there something else that will make the symptoms go away? Each year it's a bit more intense. This year, it started Thanksgiving weekend (end of November) and I'm still having flare ups about every week or two.

I wear a hat, scarf, gloves when I'm out & try to minimize exposure to outside to walking from the parking garage at work into the building. We got a heated matress pad. Moving to a warmer location isn't a current option.

If anyone has experienced this and has found a treatment that works, I'd love to hear it so I can have an informed discussion with the rheumatologist when I see her.

Thanks!

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