Cryoglobulemic Vasculitis and Rituxan

I need to talk with others who may have dealt or are dealing with this painful and debilitating problem which apparently affects 5% of persons with Hep C.  I was treated with Rituxan for cryoglobulinemic vasculitis with peripheral neuropathy with good results. I also get Procrit as needed for anemia.

I have completed week 46 on Pegasys and ribivirin and I am fortunately a responder to the Pegasys and Ribavirin. I am eager to get off it due to fatigue & anemia.  I have read (but not heard from my Drs.) that persons with cryoglobulinemic vasculitis
may need to stay on treatment longer.
  
I was diagnosed in June '02 with Hepatitis C by a rheumatologist whom I saw because of mild chronic joint pain and an elevated rheumatiod factor in the past.  Within a week of starting Pegasys and ribivirin (January '03), I was plunged into extreme pain in my back,legs & feet. I was treated for a disc problem with limited results. Two months later, a neurosurgeon I consulted referred me to a neurologist who confirmed cryoglobulinemic vasculitis as the cause of the pain and weakness (not the disc problem).

By June '03, a Hematologist got the Rituxan approved under my prescription plan.  In August '03, a month after completing the fourth Rituxan infusion, the cryocrit level was less than half the level prior to Rituxan treatment.  I noticed improvement in sensation, strength and level of pain.  By November '03, the Cryocrit level was only a trace. I continue to improve in terms of the pain, numbness, and weakness in my lower back, legs and feet, but this is very slow.

[PhilaGuy]

Hey All:

I'm glad someone brought up the topic of Cryoglobulemic Vasculitis.  Though I can't answer the questions posted, I wonder who out there has dealt with this condition.

I was diagnosed with HepC, and have my first appointment with a hepatologist in January.  I've been thinking that most of the symptoms I've been experiencing were simply atributed to HepC, but it seems that most can be attributed to CV.  These include achy legs, peripheral neuropathy in hands (only at night)- both of which come and go..no real weakness or fatigue that I can notice. What symptoms have those of you with CV had?  Would something have showed up in my initial blood tests to indicate CV?  Everything was normal except a slightly elevated ALT (46).  Any insight you could provide would be greatly appreciated.  

By the way, I love this board...you all have been so helpful over the last couple of months!

[Tallblonde]

I have most of the symptoms you describe:  achy joints and muscles and numbness and tingling in my hands and feet (particularly at night). My cryoglobulin level was tested in October and came in slightly high at 83 (normal range is 0-50).  

However, my Cleveland Clinic GI was vague (as usual) when I asked him the significance of this.  He looked at my cryo number and said "it's boring" (whatever the hell THAT means). So I don't know what to think about this.

Susan

[willing]

I can't share anything specific, but rheumatoid disorders are one of the documented non-liver complications of chronic hcv ( href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12744811&dopt=Abstract ">see</a>). Also, flare-up of auto-immune disorder is a common side effect of IFN therapy. It's good the Rituxan worked so well for you and that you were able to complete tx. Stopping the IFN and, hopefully, eradicating the virus, should remove two of the triggers. Best wishes to you.

[willing]

chronic fat-finger-induced html-itis strikes again. The link is <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12744811&dopt=Abstract">here</a>.

Susan, boy you sure do get all the feisty  GIs. I'd guess boring is good in this case. The last thing you want to hear is, "hmm... very, very interesting..."

[Tallblonde]

Yep, both my GI's are real charmers!  But I agree with you that it's probably a good thing that my test results make them yawn.  I wish I could view the results as "boring."   Unfortunately, I'm still at that stage where anything that's outside of the "normal" reference range makes me panic.

Hope all's well with you these days.

Susan

[Galen]

Boring????????  Are you sure that is the word he used?  Sounds odd to me.

[Tallblonde]

"Odd" is anpther good word to describe this GI (see eariler thread titled: "My GI is an Idiot").  But, yes, "boring" is what he called my test result.  I think it was his weird way of telling me that it didn't warrant my concern or worry.  

Susan

[SJL]

I realize that this is a very old post, but I am on Rituxan(2nd. week), and I am having worse pain in my legs than I have ever had. I have Neuropathy, Cryo and Hep C. I have treated
with 3 rds. of interferon which did not work.The leg pain seems to be moving up the legs into my thighs. The Doctors are treating the cryo and putting Hep C on the back burner. If you get this, I would love to hear any comments regarding your Rituxan treatment. Congratulations, I am so glad to hear that it did well for you!
SJL

[Hepatitis Researcher]

I am pretty sure, your GI meant " borderline" and mumbled it, so it sounded like "boring".

[Hepatitis Researcher]

This will help to get the right perspective on his comment:  (Cryoglobulin level study with 343 HCV patients:)

CGs were found in 163 (47%) patients at a mean level of 173 +/- 142 mg/L; 80% were type III, and associated to female sex (61% vs 40%, P = .0002) and cirrhosis (29% vs 19%, P = .04). Over the course of 17-130 months (median, 116 mo), de novo CG developed in 25 patients (2.3% per year), including 5 with cryoglobulinemic syndrome (.3% per year). The 10-year rates of progression to cirrhosis and of liver and extrahepatic complications were similar in CG (+) and CG (-) patients (32% vs 34%; 23% vs 16%; 5% vs 3%). The 10-year survival rates were lower for cirrhotic than for noncirrhotic patients (57% vs 91%, P < .00001), independently of CGs. CONCLUSIONS: CGs are common in patients with chronic HCV infection, mainly are type III, and do not influence the clinical course of hepatitis C during the first decades, except for the few rare cases of cryoglobulinemic syndrome.

[poocat]

My BF has cryo and is in extreme pain, has not worked in a year, has no insurance and is trying to get help in S. FL. He was recently turned down for SSDI and Medicaid. We're appealing. They ignored the fact that he has cryo and wrote that he has anemia (which he does not). He went to see a hematologist at Broward General and was told "there is no treatment for cryo" so it doesn't matter that we cannot read his blood properly to get his cryo levels and that he can go to UM for a 2nd opinion if he can afford to pay for it. We cannot afford to pay for this treatment out of pocket. Where are you getting treatment? Do you have health insurance? Are you able to work?

[joseypscott]

There are free studies out there some will even pay you .my second treatment was at scri which is a study company maybe you can find one in your area. I got paid and was in remission for 2 years. GOOD LUCK!