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Hi
I first came on this site in May 2008 when my husband was diagnosed with crypglobunemia type 1 with peripheral neuropathy. A lot has happened in the last 2 years and his condition is increasingly worse. This year they found a low grade lympphoma in his bone marrow. He has had 4 sessions of plasma pheresis ( I think this has helped the most) and various drugs. The doctors cannot agree on the courses of treatment. The latest has been Rituximab combined with a course of chlorambucil - so far 2 courses. Yesterday the haematologist rang him at home to go in today as the cryoglobulins and the paraproteins have increased dramatically. He has increased neuropathy in his legs and the feet look ready to ulcerate again. They really do not know how to treat him. He is now having difficulty walking any distance as he cannot feel his feet very well. Mary
hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.
My name is Diane Dike, Ph.D. I have cryoglobulinemia. My mother was just diagnosed with Multiple Mylenoma. My father has Parkinson’s. I have been sick with various diseases for the past 17 years. I just turned 40. I have the world’s first rescued Italian Greyhound service dog and we are doing reallllllly well together. I hope you will visit our web site and enjoy reading our stories. We have lots of fun pictures. We are completing two books to help educate others about chronic illness, overcoming life’s challenges and the benefits of a service dog. We just started speaking all over the country about the topics. Please check in and tell us your story. We really look forward to meeting you! I do not know how many days I may have left to live but I am living life on purpose and doing the best that I can with what I have to work with!
Truly,
Gracie the Italian Greyhound and Diane
http://web.mac.com/graciejc
My name is Diane Dike, Ph.D. I have cryoglobulinemia. My mother was just diagnosed with Multiple Mylenoma. My father has Parkinson’s. I have been sick with various diseases for the past 17 years. I just turned 40. I have the world’s first rescued Italian Greyhound service dog and we are doing reallllllly well together. I hope you will visit our web site and enjoy reading our stories. We have lots of fun pictures. We are completing two books to help educate others about chronic illness, overcoming life’s challenges and the benefits of a service dog. We just started speaking all over the country about the topics. Please check in and tell us your story. We really look forward to meeting you! I do not know how many days I may have left to live but I am living life on purpose and doing the best that I can with what I have to work with!
Truly,
Gracie the Italian Greyhound and Diane
http://web.mac.com/graciejc
My name is Diane Dike, Ph.D. I have cryoglobulinemia. My mother was just diagnosed with Multiple Mylenoma. My father has Parkinson’s. I have been sick with various diseases for the past 17 years. I just turned 40. I have the world’s first rescued Italian Greyhound service dog and we are doing reallllllly well together. I hope you will visit our web site and enjoy reading our stories. We have lots of fun pictures. We are completing two books to help educate others about chronic illness, overcoming life’s challenges and the benefits of a service dog. We just started speaking all over the country about the topics. Please check in and tell us your story. We really look forward to meeting you! I do not know how many days I may have left to live but I am living life on purpose and doing the best that I can with what I have to work with!
Truly,
Gracie the Italian Greyhound and Diane
http://web.mac.com/graciejc
My name is Diane Dike, Ph.D. I have cryoglobulinemia. My mother was just diagnosed with Multiple Mylenoma. My father has Parkinson’s. I have been sick with various diseases for the past 17 years. I just turned 40. I have the world’s first rescued Italian Greyhound service dog and we are doing reallllllly well together. I hope you will visit our web site and enjoy reading our stories. We have lots of fun pictures. We are completing two books to help educate others about chronic illness, overcoming life’s challenges and the benefits of a service dog. We just started speaking all over the country about the topics. Please check in and tell us your story. We really look forward to meeting you! I do not know how many days I may have left to live but I am living life on purpose and doing the best that I can with what I have to work with!
Truly,
Gracie the Italian Greyhound and Diane
http://web.mac.com/graciejc
I was diagnosed with cryo in 2002 after much testing and ‘blood-letting’. At first it was thought that I had Lupus…but the tests always came back negative. Then after about 5 months of blood tests, etc the cryo appeared in full bloom. My docs and I have foudn that a combination of Imuran and Plaquinil manage the symptoms so that I can work and play in comfort.
I have been online with this group since 2002.
I have had cryo symptoms for over 20 years. I have had lots of different treatments, including being on 3 time a week pheresis for 7 years. Currently I am on home immunosuppressants to continue immunosupression started by 2 major rounds of chemo Rituximab last year.
I would like to talk to other people who have primary cryoglobulinemia, also called Essential Mixed Cryo.
I was diagnosed with primary cryo in Oct 2003 and fibromyalgia in Nov 2006. I am interested in learning about the medicines and treatments used by others who share these conditions.
I Have Hep-C induced Cryo
This is a very rare condition. I don’t know anyone else who is afflicted with it. As doctors are even baffled by this disease, finding info about treatment is difficult. I was diagnosed 2 years ago, and already cryo has wreaked havoc on my body. I have tried several therapies, but any and all help is welcome!!
I have cryo secondary to Hep C. Right now it is just aches and pains, which with the help of my doctor, I am able to control. I am interested in new treatments for the underlying cause of Hep C, others experiences of cryo, and methods for controlling the symptoms.
I have cryoglobulinemia and vasculitic neuropathy.
Im Alan and I live in England. I was diagnosed with Essential Mixed Cryglobulinimea in 1994 after an initial diagnosis of Lupus. I was originally treated with Cyclophosphomide, then Azathioprine and now with Mycophenolate ( plus of course all the rest, prednisolone, blood pressure tablets etc.... It was always my ambition to reduce my steroid dose as I had been taking high dose steroids since 1991( before anyone knew what was wrong with me) and recently got down to 3mg daily, but then began to get colds and coughs so rightly or wrongly Ive taken it back up to 5mg.
Although not too deeply immunosuppressed and do get severe chest infections two or three times a year.
I suppose I might have some experiences with my EMC which might be of help to other people but I think the best way to pass on this information is for people to email me and if I can help with any useful info. I will.
I seem to be having trouble registering, This is a test!
I’ve had cryo since 1980. I have kidney failure related to the cryo. I’m on peritionel dialysis. i’m doing very well. I have undergone several treatments that others may be interested in learning about. I check websites occasionally myself to ask questions about cryo. I live in south florida.
Hi, my name is Polly and I have suffered with cryo for about 27 years now. I have primary cryo, with no known cause. Any help I can get in coping with this desease would be wonderful.
hi, i have hcv & cryo, since 1968 when i lived in ca. i now live of all places in alaska. in 98 i had 12 months of interferion & didnt clear the hcv. in2000 i did peg intron & ribaviron then cleared it but started getting really sick & hav’nt improved much. i have only seen a G.P. & he’s great. we read stuff off the internet as some symptoms are hard to accecpt i believe i am the only one from ak. with cryo.