about 2 mo. ago i was extremely exhausted and stressed. I broke out with purpera on my lower legs(my major symptom of cryo) and severe fatigue. Blood tests showed that my hep c and cryo were still negative(8 years). I showed blood levels of extreme inflamation and was referred to a rhuemotologist. It calmed down on its own but I wondered if anyone has had a similar experience.
Hi D
How was your summer. We have just finished winter here and I have made it
through - heaps of new cryo issues to deal with but glad to be alive. It is
warming up now here in Queensland Australia (summer here has a overnight low
of 80F and day high of 95F - hardly any wind).
How are you getting on with the steroids - last time you were trying to
drawing off them?
Have you decided to stay in DC?
A
-----Original Message-----
From: alcyon73 [mailto:cryoglobulinemia-fft-4185@lists.fireflyhealth.org]
Sent: Saturday, 22 August 2009 8:25 a.m.
To: adrian@lush.net.nz
Subject: Re: [cryoglobulinemia] negative cryo tests with symptoms
My summer has been good. I tapered down to 7 mg of prednisone and had a flareup. My doc raised the prednisone up to 15 mg a day. I’m getting along okay.
The flareup was not particularly severe. I woke up one morning with arthralgia, I did not have a rash or any sign of vasculitis. I called my doc and she doubled the dose of prednisone., which forced the cryo back into remission in a few days.
If things continue to go as they are I am going to stay in DC. I’m reserving that decision until I see how I get through winter. As long as the medication maintains remission I’ll stay here.
I’m having a little osteopenia and the doc put me on fosimax, calcium suppliments, and vitamin D. I expect that we will make a transition to an immunosuppressant like imuran or similar later in the year.
I’d like to be on something other than prednisone, but the steroids work so well that it is hard to complain about it.
The last 4-5 days I’ve been having problems with fatigue and weakness. I’m not sure what is up with that, but I otherwise feel fine.
Glen