how many of you all have cryoglobulinemia

[SnoWav]

Just got some of my blood work back and I tested positive for cryoglobulinemia.This explains why after starting TX last time my arm numbness and leg pain went away withen a few weeks.Womdered how many of you fine people have cryoglobulinemia I guess it is pretty common with hep C and causes a lot of symtoms. Had a BX Friday it was so much better than my first one.Gave me versid and fentenal ,hardly felt the numb shot and not the BX at all.That's the way it should be in this day and age painless.later

[cuteus]

I know of twotells, Ina, and  maybe Susan (tallblonde)?. it is a very sophisticated blood test that won't yield accurate results  if not properly handled, which happens frequently.  testing for it after starting tx is useless many times, since it will test negative when the virus is cleared.

[SJL]

After two rounds of therapy, total of 100 wks., plus therapy maintainence for 3 mths.,My last set of labs showed that I had cryoglobulinemia,(abnormal proteins in the blood that congeal at lower temperatures. They collect in the farthest point from the body trunk, feet & hands.)My labs also posted Alpha-fetoprotein, (which is a normally made protein made by immature liver cells), and if that wasn't enough, I also showed a Tumor marker of 33.(substances found in the blood that can be elevated in cancer.The markers can be produced directly by the tumor or by non-tumor cells as a response to the presence of a tumor.)?! According to my Hepatologist, we will watch this marker very closely and will have to react if it hits 200. Of course it's not going to! I also have purpura,but I have had this throughout therapy. The above 3 sides are all new. I finished maintainence about 4 mths. ago, and I still have the numbness in my feet, legs and right hand. Not all of the time, but several times a day. I cannot stand still for any length of time, or they go totally numb. I also have Neuropathy, which was a test done by a Neurologist of the left knee. I am a 1b, stage 3,grade 4,F, age 62, with beginning early cirrohosis on my biopsy dated 5/02. I have been fighting this disease since then. Until you don't have to invade your body with deadly toxins, I will not treat again. The treatments have totally devastated my body & I feel as if I have almost wasted 3+ years of my life. I realize that this is only my opinion and many people reach the cure, but my body just would not respond to the meds. I wish you and everyone on treatment success, and will keep you all in my prayers. God Bless
Sandy

[giddyup]

I tested positive for cryo.I have aches primarily in my knees and hips getting worse every year. When I'm exposed to cold I'm achy for the rest of the day.I Didn't notice a difference on tx but I was on pain meds then and now. Male 42 yrs, stage 4 grade 3. Currently in my third wk of mainenence tx after two unsuccessful tx's.

[Not 4 Gotn]

Please tell me what cryoglobulinemia is and what symptoms are.  I have had such strange symptoms, I am seeing a rheumatoid doc, ortho doc and a neuro doc for symptoms other than the usual HepC, like arm and leg numbness,tingling and severe itching.  I am not on tx, but my doc gives me Atarax for the itching (it works), but the other stuff is still being investigated.  I hope you will have patience with my ignorance, I am learning a lot here.  Finally I don't feel so crazy.

[way]

I take aterax for itching and it really does work. At first it made me tired but after about a week it didn't,or I got used to it. I don't need it right now cuz my rash is gone and not itching-but it was a lifesaver.

[way]

WOW I have had peripheral neuropathy (but not pupura)and leg pain. It went away after begining TX. I thought the neuropathy was from repetitive stress.
How do you test for this, an antibody test?

Can you elaborate a little more about your symptoms etc.

[mycoldfeet]

I am 1a and had rashes that would come and go especially on my upper legs, if I sat in one position, like sitting my feet would swell and hurt when walking, and numbness in spots, I had to take digital pictures of the rash to show my gastro, I had already seen dermatologist, my toes seemed to turn darker in cool temp. I was checked for it and dx'd pos. Since on tx no rashes, swelling, still have a couple numb spots but getting better. What it is, is an antibody that traps the virus in the very small vessels and causes some to burst, hense the rash, or swelling and pain, like vasculitis. If you research it there are three kinds, look under hcv, 75% of people with cryo also has hcv. The cure is a hoot, getting rid of the virus is the cure, I did a lot of research on this paticular strain so if I missed anything just ask or go to clinicaloptions.com and the video explains it well, just have to register.

[Jeffyboy]

My Doctor tested for this  and the test came out abnormal with a presumptive result I did not know what this meant until you said something. I usually get swelling in the joints and legs I hope they go away aftert tx I start my first tx this friday and I hope it does take this discomfort away.It is a tradeoff for the pain I have had now for the last 9 years of my life. Well I hope you will continue to have success in your treatment and get these cryo's under control.  
Jeffy

[SnoWav]

My small town gastro thought my arm numbness was heart related so I had to have a stress test twice with injected dye before he would treat me the first time. It got so bad I coulden't sleep,I wondered if I would be able to make it thru TX the way I felt before i started.withen 2 weeks of starting TX I felt much better and the brain fog joint pain and numbness went away.It has been 5 months after 48 wks of TX  now that I found out I had relasped,still feeling better than before TX but some of the cryo sides are slowly returning.I still want to wait out the new drugs but if my BX results are 3/3 or beyond I may opt for TX and that would be 72 weeks of stronger combo. You can google cryoglobulinemia and get lots of info for those that are interested.later

[mycoldfeet]

Read my post above, It can cause all or some symptoms of itching, with me it was localized followed soon by red dots and a large rash on leg(s). swelling in lower extremities, numbness in portions of feet, pain bending toes and walking, especially after sitting in one position. In cool areas my toes would turn darker, the rash would slowly dissipate over a few days like a bruise would. I was miserable, walked like a 90 y/o but only 52,It is caused by the anti-body for hcv and traps the virus in like a web, this clogs the small capillaries (vessels) causing the vessels to burst making the dots and rash, or just edema (swelling) or itching because the vessels are irratated, the cryo caused by hcv is cured by removal of virus (tx) other types are disease specific (kidney ect.) and you don't want to confuse them, because the other 2 types can be fatal. hcv cryo will go away when the virus does but does not reflect the severity of the hcv.