The medical world agrees that ‘cold’ causes Cryoglobulins to precipitate within our blood. They also agree that ‘warmth’ enables that precipitate to redissolve. They also agree that Cryo precipitation thickens ones blood and that the precipitate likes to clump together. In the world of pipes and flow, thicker fluids travel more slowly than thinner ones for the same size bore. And muck in fluids tend to coat the pipe inner wall, reducing bore but in the case of our vascular system also denying contact twixt vein inner wall and the blood that helps keep it healthy. Cryoglobulins are not only inclined to clump together but are also ideally shaped for getting snagged somewhere. In the world of our bodies, Cryoprecipitate thickened blood means reduced oxygen-carrying ability. So physically and mentally tired, aches and pains after a cold exposure wouldn’t be a surprise. Nor would mood swings. Or unusual panting after minimal exercise. But while that precipitate is in our system it may be doing other damage. Our vascular system contains some very narrow pipework, very easily blocked. If those Cryoglobulins are loose in our bloodstream, who knows where they might do damage. In defence of cold, the veins in our extremities and skin constrict, further causing problems for thicker than normal blood flow. A short sharp nasty cold exposure can floor me in seconds but it’ll take a day or two of staying comfy warm and avoiding further cold exposure to recover. On that basis, with the demands of daily life it is easy to accumulate a growing presence of undissolved Cryo precipitation which only needs a little more precipitation before something gives. With me that would usually be unconsciousness. So ‘staying warm’ really means either no precipitation going on or that recovery from a previous cold exposure is happening by giving those Cryos a chance to dissolve back into the blood and become harmless again. ‘Cold’ can be as subtle as obvious and is a 24/7 for but the thought of what that precipitate could be doing keeps my motivation high for avoiding cold exposure. Layers and all the rest of the clobber and tricks may be a chore and inconvenient at times but cold exposure means Cryo precipitation and illness. Prevention isn’t infallible but it keeps me well most of the time and holing up for long enough always restores me should prevention fail. Stay warm stay well, get cold get ill is how it works for me. Fitting a life around that is the really tricky bit! Does Cryo thickened blood really carry less oxygen? I decided to test this with a blood oxygen saturation meter. The kind that fit on a fingertip. Lowest reading so far during a particularly awful reaction to cold is under 84% Normally I’m 97- 99%. Stay warm!
Starting on Imuran:
- I’ll be starting on Imuran this weekend. I was on a combination of cyclophosphamide, antibiotics, and prednisone for 3 months, to force remission and withdrew the cyclophosphamide two weeks ago to “wash out” a bit before starting the transition to Imuran.
- Right now I am on 30 mg prednisone per day only and still seem to be in full remission. My tolerance of cold is basically “normal” right now….. if my life can be described as normal at all…..
- Imuran is a very slow acting immunosuppressant.
- It takes weeks for it to have any effect at all, and is typically a month or two before it is at full effect. (In the near term I expect to remain on antibiotics.)
- Right now the plan is to start Imuran at 50 mg, twice a day, and in two weeks I’ll taper down the prednsone to 20mg/day and hold there until I get blood work done again in another month.
- Once the Imuran is in full effect, and if I am not flaring, I’ll start tapering off of the prednisone completely and remain on imuran for remission maintennence….
- This is the teter toter of transitioning off one medicine to another.. If down too fast on steroids I may flare. It is a balance that is difficult to maintain and is unpredictable.
- Using steroids in conjunction with Imuran (or other immune suppressants) is a fairly standard protocol for establishing remission in essential cryoglobulinemia.
*NOTE: It is really not what one would do in the case of cryo that is secondary to some other cause. In those cases the primary cause is usually treated first.
The Vasculitis Patient-Powered Research Network is open to ALL United States Cryoglobulinemia patients. Please Register.
The V-PPRN seeks to transform how clinical research in vasculitis is conducted by directly engaging patients, investigators, care providers, and health systems to develop research methods to electronically collect health records and patient-reported data on a large number of patients with various forms of vasculitis. The goal of the V-PPRN is to conduct high-quality studies that will improve the care and the health of patients with vasculitis by exploring research questions that matter most to patients and advance medical knowledge about vasculitis.
Patient-Engagement in Network Governance
Central to V-PPRN governance structure is the theme of patient leadership, engagement and group consensus throughout all aspects of network design, implementation and governance. Fully embracing the belief that patients and families should be full partners with investigators and clinicians in research and care, the Co-Principal Investigators include Dr. Peter Merkel, MD, MPH and George Casey, MBA, patient-partner. The patient-academic-clinician shared leadership model replicates itself at all levels (Steering Committee, Working Groups, V-PPRN Patient Advisory Council) having a mix of stakeholders that include academic health care professionals and patient a
It has been a hard health year for Marianne and I but through it all we have been epatients. We have tried to educate, engage and evolve along with the challenges.
One of the biggest personal challenges I have had to adjust to is that my health did not allow me to attend Stanford Medicine X 2013. I too was granted an epatient scholarship to attend the conference, along with 34 other epatients. I was looking forward to attending but you learn to adjust, adapt and accommodate when you have a chronic illness. In the 2 plus months prior to Med X, I had a serious lung infection and could not get well. Larry Chu and I spoke by phone and he assured me that I had to put my health first and miss the conference. Larry said he would honor my scholarship for next year, 2014; for which I am very grateful. Thankfully, the mainstage of the conference was livestreamed so I watched from the comfort of my couch.
Medicine X has been an integral part of the evolution of Alliance for Cryo. I had hoped to network, connect and shake hands with the people I admire so much but the beauty of MedX was that I got to connect with folks via Social Media. I am still playing catch up and trying to connect with all the amazing attendees. Social media means so many things but to me it is a tool towards social justice. I am a longtime activist born and raised in the heart of the streets disability civil rights movement, Berkeley, California. I grew up knowing something was wrong with my body and identified with people with disabilities. I learned to sign fluently, using American Sign Language by the time I was 14. I became a sign language interpreter, Deaf advocate and part of the community trying for social justice. I went to college at the time The Americans with Disabilities was enacted in 1990.
I saw the same trifecta of themes at MED X; activists, advocates, and people with disabilities trying to get access, exercise their rights and share their lives and stories.
- The new activists: epatients.
- The new activist location: the internet.
- The new action: better health care.
The epatients, healthcare providers and researchers I watched were all unique and diverse but united in one thing – improvement in health care with epatients at the heart of it all.
Eileen M. Propp, Ph.D. CoFounder