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Managing My Cryo: Imuran, Steroids and Balance

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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.

 

Vasculitis Patient Powered Research Network.

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The Vasculitis Patient-Powered Research Network is open to ALL United States Cryoglobulinemia patients.  Please Register.

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The Vasculitis Patient Powered Research Network (V-PPRN) is a collaborative research effort for vasculitis research involving patients as partners in research along side clinicians, researchers, physicians and interested parties.
It is a joint venture of The Vasculitis Foundation and the Vasculitis Clinical Research Consortium. The Vasculitis Foundation is our trusted vasculitis research partner and is the largest private funder of research on vasculitis. The VF collaborate with researchers around the world to fund the most promising studies. We are proud to work with the Vasculitis Clinical Research Consortium to bring you a new vision for vasculitis research with the V-PPRN.
has the ability to collect and securely store patients’ disease experiences, known as patient-reported data, as well as electronic health records to build robust data for innovative vasculitis research. The Network is patient-powered and patients participate as full partners in the work of the V-PPRN from generating a research idea to the summary of results and all the steps in between!

 V-PPRN Mission

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