Is Cryoglobulinemia Damage Permanent

[GetOffMyLawn]

I'm genotype 1 infected and in December last year started triple therapy (Incivek) because the effects of cryoglobulinemia were becoming severe. For years my palms and feet soles were alternately numb or burning but for the preceding year I started to have sharp pains at the tip of my toes at random moments and the numbness was spreading up my calves and wrists. For the eighteen years I knew I had HepC, my liver enzymes were only slightly elevated and biopsies rule out cirrhosis. Late stage one or early stage two was my hepatologist's  opinion.
So I'm now in week 37 of treatment. I've been virus undetectable since week 4. I somehow got through the nightmare of side effects of Incivek but had to supplement my meds with betamethasone cream and prescription antihistamines to control the itching. My peripheral neuropathy symptoms were considerably reduced, but even today my hands are numb and my feet burn. So are these symptoms permanent, even if I achieve SVR.

[GetOffMyLawn]

Thanks for your thoughtful comments.
Sorry to hear you had complications (as doctors and nurses say). Hope they continue to abate.

[pooh55811]

Hepatitis C causes Peripheral Neuropathy (as do a few other medical conditions and some nutritional  deficiencies).

It sounds like you have symptoms of Peripheral Neuropathy (numbness, pain, burning).

I had Peripheral Neuropathy prior to treatment, some burning and tingling in my toes. It got better on treatment, or so I think. It is possible that the toe burning was being overshadowed by the severe side effects that I was having from treatment. Everything is relative. After treatment ended, it seemed that the burning was less than prior to treatment.

However, several months after EOT, it seems the burning got a little worse. At the time I had also developed a new symptom of a warm erythema of the lower calves bilaterally. Then, 4 months later I developed pitting edema of the lower 1/2 of the lower legs and ankles and feet bilaterally. This seemed to make the Peripheral Neuropathy a lot worse.

I finally got rid of the edema and erythema a few months later (thanks to Curcumin) and the Peripheral Neuropathy improved. However, it is still worse than it was prior to Tx. Now I have burning of the toes and feet bilaterally and a feeling like I have cotton or sox bunched up around my toes. This is most noticeable at night and when I am sitting. Still, it is better than it was a few months ago. I also have some numbness in my hands when I am driving or have my hands in a certain position.

I do take Curcumin, Acetyle L Carnitine, R Lipoic Acid, Magnesium, and several antioxidants, all of which I feel have helped with the Peripheral Neuropathy.

I should add that my Peripheral Neuropathy is probably a consequence of both Hep C (infected 37 years prior to SVR) and my Autoimmune Disorder, Sjogren's Disese, which also causes Peripheral Neuropathy.

So, will yours improve? I don't know. It is quite possible it could improve some after SVR. After you have been finished with Tx for several months you will have a better idea of where you stand. If you still have Peripheral Neuropathy symptoms several months after SVR, I think it would be advisable to see a Neurologist. They can test you to see if you have it and what type you have. They can also offer medications for relief of symptoms.

I opted out of the medications the Neurologist offered me and decided to try supplements first. The supplements seem to be helping a lot, so I am sticking with them for now.

I hope your symptoms resolve and I wish you SVR.

[Dee1956]

It is possible, I did get a test before clearing the HCV and I was positive for cryo..
I do think that there are 3 different kinds. For some the cryo gives them Renaud's, or affects their kidneys.

Good luck :)

[GetOffMyLawn]

Thanks for your reply. Good to hear your symptoms abated. They sound much worst than mine. I've not had a positive diagnosis of cryoglobulinemia, just an assumed conclusion based on my readings. Maybe I have something different, since my symptoms are so different from yours.

[Dee1956]

Hi there! I can only comment about my own experience.  I had Cryoglobulinemia before treating the HCV.  It was very bad, mainly my legs would break out in red dots, which I later found out was bleeding under the skin.  Then my legs would swell til I thought it would rip, it would feel like my ankles were broken.  I was told the brown dots that remained were iron stains from the blood and would never go away.
I finished tx Feb 2012, all the pain is gone and the dots have disappeared over the last two years.

I hope the same for you.
Dee