Cryoglobulinemia Member Introductions

Recently diagnosed with type 3 polyclonal cryoglobulinemia.

Just checking out the site.

I was recently diagnosed with essential cryoglobulinemia after it put me in the hospital for several weeks. I’m looking for support groups for this condition.

I was diagnosed with Idiopathic Cryo in July last year. I have had to move countries from New Zealand to Australia as I was not surviving with cold troughs. I live in Queensland now and symptoms seem to have abated. Each time I visit NZ to see family I get sick within minutes of stepping off the plane. I would like to visit NZ but each time I go back I get sick - does anyone know of any treatments that work for short trips to cold areas.

Hi

I have Idiopathic Cryo - basically no underlying causes detected just cryo
symptoms and blood test confirmation.

What were your first symptoms? What did the doctors say? Have you got in
touch with a heamatologist/immunologist?

Cheers

Adrian

-----Original Message-----
From: alcyon73 [mailto:cryoglobulinemia-fft-2529@lists.fireflyhealth.org]
Sent: Monday, 23 March 2009 6:59 a.m.
To: adrian@lush.net.nz
Subject: Re: [cryoglobulinemia] Cryoglobulinemia Member Introductions

Hi! I was diagnosed about 25 years ago with hep c…They now know that cryo and Hep C are related. I’ve been treated at Jackson Memorial ( Miami teaching hospital). I went on interferon about 10 years ago. I also had plasma phyerisis. Good results from both. Cleared hepc and cryo symptoms remain at bay. I had kidney failure during all of this because the cryo attacked my kidneys. I have been on dialysis for 10 years. 7 of which have been on peritionel dialyisis. I do it at home while I sleep. I live in Florida so haven’t had to deal with very cold weather. I did live in Boston when I was diagnosed in 1982. Had all of my treatments in Florida as the disease progressed. Am doing quite well. Fragile skin…a bit of arthritis…fatique but all in all good. Living a very full life! Ask me anything…I’ll try to answer. I am 59 years old. I work part time as an assistant to an elderly woman. Pay her bills, look after her affairs. It seems to be difficult to find a support group. Although there is tons of information on the web now about cryo.

Thanks debbiepb. Great to hear from others with Cryo - thought I was in the
dark!

I am 40 years old have Idiopathic Cryo (no underlying causes detected) and
suffer real bad in the cold. I lived in Christchurch in New Zealand which is
surrounded by beautiful alpine mountains - the daily temperatures can go
from 2 degrees C to 25 degrees C. I get chronic fatigue, dizziness,
arthritis symptoms (aching joints and muscles), numbness in feet, headaches,
stomach cramps, lack of concentration, and shivers.

I moved to South East Queensland in Australia where the temperatures are
most of the time above 20 degrees C. I feel great here.

I do have a whole load of questions.
Does Cryo get worse over time - ie does it saturate in the blood?
My symptoms seem to noticeably increase each time I go back to see family in
NZ (more so than the previous time) - is this normal?
When I get back to Queensland it can take weeks before my feet and hands
feel normal again (numbness and aching) - what is causing this?
I have read reports that say that there is no idiopathic cryo and that there
is always an underlying cause - any ideas?

Thanks

-----Original Message-----
From: debbiepb [mailto:cryoglobulinemia-fft-2529@lists.fireflyhealth.org]
Sent: Tuesday, 24 March 2009 5:16 a.m.
To: adrian@lush.net.nz
Subject: Re: [cryoglobulinemia] Cryoglobulinemia Member Introductions

I’m so happy to see others with cryo here. I thought I was completely alone!

My cryo seems to be controlled for the moment. I’ve not had any symptoms since I started on steroids, though cold temperatures seem to cause pain now where they did not do so before.

My first symptoms were those of rheumatoid arthritis. It started in November and in a few weeks it escalated to fatigue , raynauds phenomena, and then the lesions started, and I developed an ulcer on my foot, and it developed gangrene… By that time I was in the hospital and was anemic and bleeding internally. It took another two weeks before they figured out what was causing my symptoms. My wounds are still healing, but like I said, since I started on the steroids, I’ve not had any further symptoms.

i find cold temperatures to be painful and frightening after my experience.

The side effects from the steroids are mounting and my doctor is thinking about putting me on imuran. I’ve been tapering down to a smaller dose of steroids since January.

No, I don’t know of any short term relief from the symptoms other than making sure you keep your core body temp up. Don’t get chilled. Stay warm, :slight_smile: I dress in layers and make sure I cover my head and I wear gloves. I’ve become an expert in not getting chilled.

Me :smiley:

Dear Alcyon73, you have had it pretty rough. Have you tried a holiday in a
warm place (eg Miami, Hawaii, Asia)? I did and moved as quick as possible to
live as the symptoms seemed to escalate in the cold place where I was
living.

I also became an expert on keeping from getting cold but after a while it
was no use because there was always some part of me that was cold. And as
soon as I stepped outside the cycle started all over again.

I have found that the sun has a great effect on radiating warmth to feet and
hands without causing dehydration (such as hot bath/steam room).

What have the side effects been of the steroids?

:slight_smile:

-----Original Message-----
From: alcyon73 [mailto:cryoglobulinemia-fft-2529@lists.fireflyhealth.org]
Sent: Tuesday, 24 March 2009 8:17 a.m.
To: adrian@lush.net.nz
Subject: Re: [cryoglobulinemia] Cryoglobulinemia Member Introductions

Yes it was a harrowing experience. It was as though the cryo was hitting me from a bunch of different directions at the same time. Eventually cryoglobulins turned up in a blood test and that pretty much cinched the diagnosis.

I live near Washington DC. Fortunately this winter has been mild and there have been relatively few very cold days to deal with.

I’m 55 and I love my job and I’d hate to move unless I have to. But yes, I have considered the possibility that I might have to give up my job and move some place with warmer winters.

The side effects from the steroids have been numerous;
Puffy face, water retention, weight gain, acne, shaky hands, difficulty sleeping, excessive sweating, etc. The shaky hands was getting really bad but eventually got a lot better once I got down to 15 mg of prednisone a day (I was on 60 mg/day).

I have also taken steroids…prednisone. It does cause problems with your bones, deterioration. It also makes you gain alot of weight. But if 15 mgs. helps, go for it! I really don’t have much experience with the cold as I live in Florida. Thank god! I think that the plasma pherysis helped me the most. I don’t know if cryo gets “worse”. It seems to flare up and then go in remisson from my experience. Thank goodness I have been in an extended remisson as the kidney failure keeps me busy enough! I do rest alot and I think that helps. Stess also seems to make things flare up. I have essential Mixed cryo. Have you been tested for hep c?

Yes, based on what I’ve read cryo does seem to flare up and then go into remission. Treatment can drive it into remission as well. Yes, I have been tested for Hep C and Hep B, multiple times. I’m negative for Hep… Yes the steroids can cause osteoporosis. I just had a bone density scan. I’ve not yet seen the results.

Recently I’ve been reading about people with essential cryo who have gone into remission after being treated with interferon and/or rituximab, in spite of testing negative for a known virus.

It sort of makes me wonder if there is a hitherto unknown virus that knows how to hide like a retrovirus that is responsible for essential cryoglobulinemia,

I’m glad to hear that you have remission. As far as I can tell I am in remission now. I’m hoping it will last, and afraid that it won’t, but so far I’ve had good fortune in that I dont’ seem to have Hep C or lukemia. It’s just me and cryo.

I’ve been having troubles adjusting to having cryo. I was a happy camper and this thing hit me all at once, and now i have it and my whole life has been changed. I’m doing the best I can to keep living as normal a life as I can, but sometimes it is hard.

Me :smiley:

Hi

My husband was diagnosed with cryoglobulinemia type I (monoclonal) and he also has paraproteins in his blood that shouldn’t be there. Myeloma is usually indicated but they cannot find a cancer. He has had 6 treatments with cyclohexamide but although the blood looks better the symptons have got worse. He has now lost a lot of sensation to above his knees. If the temperature drops a little he is blotchy all over his body showing that nerves are being killed. We live near Chester in the UK and the doctors in that area have never seen the condition so we don’t know the prognosis. We are told that mono is more rare tan the polyclonal type. All very worrying. Mary

Hello Mary. I’m sorry to hear that your husband is having such difficulty with cryoglobulinemia. I hope the doctors find the right treatment for him soon.

Yes, Type 1 cryoglobulinemia is the rarest. I don’t know what the frequency of occurence is for type 1, but it is not so common as compared to type II or type III.

The blotchyness on your hubby’s legs might be purpura
or some other manifestation resulting from vasculitis or a lack of blood circulation caused by the cryoglobulinemia.

You have to be wary of damage to internal organs, particularly the kidneys. I’m going to tell you straight up that if the kidneys are involved the prognosis is not as good as it otherwise might be.

From what I’ve read, with type I cryo , you need to be wary of hyperviscosity syndrome as it can damage the eyes and can cause blindness.

Currently the state of the art in treatment for cryo is to use medications to drive it into remisssion (by suppressing the immune system) and to keep it there so that it does not damage internal organs. the unfortunate side effect is that the resulting suppression of one’s immune system leaves a person susceptable to infection. If you want statistics; Prior to immune suppression therapies , people with an autoimmune vasculitis had a 75% mortality rate after 5 months. These days it is a bit better and you can expect less than a 50% mortality after 10 years , and survivability improves greatly if you don’t have kidney involvement or hepatitis C.

The number one killer of people with cryoglobulinemia is likely to be kidney problems and the number two killer is quite possibly infection from some opportunistic organism or virus.

If you can get your cryo into remission , do so. If not remission, do what you can to suppress it as much as you can.

good luck and god bless you
Me :smiley:

Hi Mary, vital you get with a doctor who has dealt with and treated patients
with cryo. Have you thought of going where it is warmer? I have moved to
East Australia and the symptoms have reduced rapidly (within a couple of
months). I have had no meds for this and found the absence of cold exposure
(less than 20 degrees C) has made the difference. A

-----Original Message-----
From: englishrose [mailto:cryoglobulinemia-fft-2529@lists.fireflyhealth.org]

Sent: Sunday, 3 May 2009 6:46 p.m.
To: adrian@lush.net.nz
Subject: Re: [cryoglobulinemia] Cryoglobulinemia Member Introductions

Life is about health, family and friends, but sometimes its hard to keep focus on what is most important

I live in the northeast and suffer from seasonal depression. I basically hibernate from november until april. Besides moving, I’d really like to talk to people about how they’ve conquered their depression. I’m a really cynical person and depression has got me beat :confused: