Cryoglobulinemia

[Diana66]

Hi everyone

Did any of you tested for Cryoglobulinemia after the EOT?

I am just starting to have same symtoms I had before starting tx. For 40 weeks I did not have any symptoms and now they are back. I still have 3 weeks to go but part of my goal is to get rid of the cryo as well

[Dee1956]

here in case you don't want to read it all

mmune Thrombocytopenic Purpura (ITP)
is an
autoimmune bleeding disorder caused when the blood
doesn’t clot. Symptoms of ITP are easy bruising of
the skin as well as bruising under the skin that can be
seen as red or purple dots on the skin. In severe cases
bleeding from the nose, gums and gastrointestinal or
urinary systems can occur. Increased prevalence of
ITP has been found in people with HCV and in those
treating HCV

[Dee1956]

Hi, there, thanks so much for coming on here and sharing your information.
When I found out I had it I did not understand it.  I do now, my temperature is frequently below 97
Thanks again, I am going to check your group out.
I have a cousin who is getting it on her legs, she does not have HCV, no doctor has ever been able to help her. I will pass on your information.
Dee

[Dee1956]

Hi I was going through some notes and remembered that I had this HCV Advocate Extra hepatic manifestations, this might help you, there are other things that can cause red dots, one talks about it being related to the tx.
I also have the spider nevi, I hope they go away as I get better.  Wow, it has been 2 years since I started the tx.  It seems like yesterday :)
I can't remember which one so thought I would send you this.  I hope it helps you.
My best to you, Dee

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf

[LAUGHINGNANA]

My I have cyro but I don't have hep-c.  I am type 2 cryo and yes there are 3 types of cryo.  It is true that many times the cryo is eliminated with hpe treatments but not always.  The test for cryo is a bit complicated in that it has to be performed in a lab that understands the need to keep the blood warm.  I am a patient and advocate and a network called Alliance for Cryoglobulinemia.  If you go to our website it will give you lots of info.  Presently it is down for the next few days since we are having a server problem.  If you go to facebook we have an information page call Alliance for Cryoglobulinemia and we have a support group as well. If you would like to talk with others that have hep-c and cryo you are welcome to join us by sending me your name on facebook following the info on the page to connect with me. If not I would gladly bring your questions back to our group if you need support or information.  The patients are great about sharing their experiences just like here. Dee1956 it sounds like you did have a cryo flare with the swelling and the purpura.  It is not only cold weather that affects cryo people.  Some patients report like myself that they can't be exposed to weather in 50's or they will break out in a rash and get other symptoms.  If my fingers, hands, noes, ears or toes are cold I know that it is too cold for me.  Actually the blood begins to gel when it drops below 98.6 and causes problems.  I have had kidney failure as well as heart failure and severe anemia from my cryo.  Anyway just wanted to share with you and let you know there are others who have this disease if you need help.  But please don't ignore the symptoms.  

[Dee1956]

Hi I found another article
http://www.nlm.nih.gov/medlineplus/ency/article/000540.htm

I have to say I don't understand how it works, it says that the blood gets cold and that is how it affects the body.  I had the red spots and purple splotches in July,  It was my worst outbreak.  I think stress affected it, I was told I was losing my job, I was also sick at the time, I missed 57 out of 80 hours those last two weeks.
My legs got huge and it felt as if my ankles were broken.

Take care, I am hoping this is fluke.

I did find that if I put my legs up it helped quite a bit.

Oh, I left out part, the scientist said that the body gets a virus, the white blood cells came out to fight it and then because my platelets were low blood came with it and then when the blood went back in to the body it left behind an iron stain.
I would love to know more about this.
It talks about an autoimmune problem. How is your thyroid?

[Dee1956]

Dear Diana, as Will said there are other reasons for the cryo other than HCV.  I was diagnosed with it before my last tx, I assume it is gone as I have not had a recurrence since I cleared the virus two years ago. I have not been tested since I cleared the virus.

I would talk to your doctor.

I was told by a scientist at my old job that it was the body fighting a virus though I have heard of others who have other types.
I think there are 2 types and then a mixed type and probably many more reasons for it.

How are you platelets?
Take care, hang in there
Dee

[BoceprevirGal]

  Sorry, Diana, I cant remember, did you test positive for the Cryo before
beginning your Tx...I think you did?
   I never got tested for it, before Treating, as my joint pain was fairly minimal, just knees and the s/c dislocation.  Midway thru my Tx, I got hip joint weakness, and it would pop out of joint.  That continued until about 6~8 months post Tx, and has now (knock on wood) disappeared.
   There are so many variations on joint pain, when it comes to reactiveness to Interferon, and I'm glad your joint pain was gone during your Tx, and I hope it goes away again.
  

[willbb]

Very often it is known that cryo  can be a non-hepatic symptom of having HCV as you know and when the virus is eradicated the cryo resolves ,however not always
.I have not personally had this condition and hopfully someone here (there are a few) who have will chime in

You may have already seen this article :

http://emedicine.medscape.com/article/329255-treatment
.
If HCV test results are negative and clinical suspicion remains high, these tests may be performed on the cryoprecipitate. Asymptomatic cryoglobulinemia does not require treatment. Some authors recommend intervening as little as possible except when faced with severe deterioration of renal or neurologic function. Secondary cryoglobulinemia is best managed with treatment of the underlying malignancy or associated disease. Otherwise, cryoglobulinemia is treated simply with suppression of the immune response. A paucity of controlled studies evaluating the relative efficacy of various therapies limits the use of existing data.

Standard hepatitis C treatments usually work for patients who have hepatitis C and mild or moderate cryoglobulinemia. However, the condition can return when treatment stops.

Best...

Will