1280753 tn?1367757932

Cryoglobulinemia - joint pain, rash, purpura and more.

as i have posted, i relapsed 1 month after SOC treatment. post treatment i have been getting really bad joint pain; mostly hips and know the knees. if i sit too long, it takes me a while to work the joints. people around me just say it's your age catching up to you.....well now i know that's not the case. i recently met with my liver specialist and i mentioned this recent joint pain to him. he said it was Cryoglobulinemia. i did some research on it and this is what i found:
Cryoglobulinemia is the presence of abnormal proteins in the blood. These abnormal proteins become thick or gel-like in cold temperatures.
Causes, incidence, and risk factors
Cryoglobulins are antibodies. It is not yet known why they become solid at low temperatures. When they do thicken or become somewhat gel-like, they can block blood vessels throughout the body. This may lead to complications ranging from skin rashes to kidney failure.
Cryoglobulinemia is part of a group of diseases that cause vasculitis -- damage and inflammation of the blood vessels throughout the body. The disorder is grouped into three main types, depending on the type of antibody that is produced.
some of the symptoms are, joint pain, difficulty breathing, fatigue, musclepain, purpura.
so let's see, the symptoms i have are joint pain, difficulty breathing, fatigue, musclepain, purpura.....hmmmm, now i know more about the rash that i have been getting for a few years now. and also the purple/red dots that appear on my legs that look like a constellation sometimes. yikes....
Purpura - is purple-colored spots (in my case a lovely shade of crimson) and patches that occur on the skin, organs, and in mucus membranes, including the lining of the mouth.
Purpura occurs when small blood vessels join together or leak blood under the skin.
When purpura spots are very small, they are called petechiae. Large purpura are called ecchymoses.  (i get both).
Platelets help the blood clot. A person with purpura may have normal platelet counts (nonthrombocytopenic purpuras) or low platelet counts (thrombocytopenic purpuras).
my current platelet count is 67,000.
this clears up a bunch of symptoms for me; namely the recent joint pain, the rash, and the purpura.
i think these are somewhat normal side effects of HCV that i am experiencing. i was told that the rash was caused by bile salts being present and causing the rash (Cirrhosis of the liver creates bile byproducts that travel to the skin leading to extreme itching problem that becomes intense at night.)

i just wanted to share this with the forum, as these symptoms seem to be somewhat common to us.......now where is my anti-itch ointment.....(clobetasol is most excellent)

peace out dudes and dudettes
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1280753 tn?1367757932
a couple more points i would like to make:

A. why can't we edit our posts....(this really sux, as i made a typppo above; "know" should be "NOW" in the second sentence) really? let us edit our own posts...ya, i know a mod can do it...it's 4:30 am and i can't sleep, and i am getting an allergy attack, and i still have a little riba rage stored up and i want to let it go...
and 2- at the end of my symptoms of cryo rant, i mentioned "cirrhosis of the liver"....i am not suggesting that everyone with a rash or joint pain has cirrhosis. i just want to be clear on that one.....the post was about me...ya me, it's always about memememememe....tito, get me a tissue.

Helpful - 0
317787 tn?1473358451
Hi just wanted to say I had the same thing.  I had it before treating in 2008, no one diagnosed it, then when I relapsed it came back even worse.  The pain for the first year was hard.  It did improve with time.  I am now 8 weeks from treating with the new triple tx and glad to say I am UND, hope I stay that way.
Helpful - 0
317787 tn?1473358451
Hi I wanted to say that I am sorry the tx did not work for you.
I know how you feel about not being able to edit.  I need to edit my post.  When I wrote it it had been 8 weeks since I finished treating and I was UND
Now it has been 15 weeks, I hope the cryo is gone along with the HCV
My best to you
Helpful - 0
Avatar universal
Thank you for that post. I too have all those symptoms. Since I have been undetected I no longer have the itching or the rash though.
The joint pain is a killer. My nurse suggested I try Glucosamine sulfate and it's been 4 days. It seems a bit better, but I don't know if that is the placebo effect or not.
All the best to you.
Helpful - 0
1856494 tn?1340542614
Just wanted to say myself and I concur with you about mememememe.

That was nicely put and great info.  Thanx   Unfortunately I have had this experience on my face according to one diagnosis, another called the hamburger lookalike legion a staph infec.  I call it gone but it took a couple months and Bactrin.  I hope you have success dealing with this - understanding it sure helps.

Wishing the best for you in the new trial results which may help you and so many.   There are a lot of nightowls here still using whiteout.  = : )
Helpful - 0
Avatar universal
My joints have hurt for the past half year, and they pop out. his happened a few weeks before Tx,  my S/C joint, and now, first, the joint where my thigh meets my hip..it clicks out and I cant walk, and today, I sat for too long, on some cemet steps, and when I moved again, my knee had stiffened up, and popped out, and I cant walk wihtoutpain now. Then, after a few days, the pain will go away for awhile.
   I'm wondering if yoga might help, I dont wantit getting worse
Helpful - 0
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