Myelofibrosis Treatment Banishes Behcet’s… Coincidence? I think Not
About one month after my Autumn 2009 PV (polycythemia vera) diagnosis, I started getting unexplainable lesions in most inconvenient locations (I’ve shared this over a year ago). After several months of excluding many possibilities, it was diagnosed as “Behcet’s Disease/Syndrome” or “Probably Behcet’s” in March, 2010.
I found it odd that I would acquire an MPN (myeloproliferative neoplasm) and an auto-immune disease around the same time (mid-40’s). My internist said anything is possible; my hem/onc and rheumatologist said there was no connection.
While the medical literature didn’t show any links with Myeloproliferative Neoplasms (MPNs) and auto-immune diseases, the question persisted in my mind.
Chemical Reactions or Physiological Changes?
I took Hydroxyurea (HU) to manage the polycythemia vera, along with occasional phlebotomies. When the Behcet’s became unbearable, I was treated with prednisone for over a year to manage the flares. I then switched to Remicade infusions when I couldn’t stand all the side effects of prednisone. The Remicade worked like a dream for six months. The last six months of using it, however, I endured debilitating inflammation and joint pain. My rheumatologist pointed to the PV and my hem/onc pointed to the Behcet’s. Even getting second opinions in both fields kept me in a painful mobius loop.
Last November, a gastroenterologist friend said that the inflammation symptoms were consistent with what some of his Crohn’s patients experience after a time on Remicade. I was in a conundrum: which pain do I prefer — the hands, feet, and joint pain or the lesions pain in other equally important body parts. It was a false choice.
At the same time, all my blood counts were on a slow but stead descent and we knew something new was happening. I quit taking the Remicade and decided to use prednisone when a flare was just beginning. It took about eight weeks for the Remicade to fully leave my body.
Enter Jakafi… After being diagnosed with post-PV Myelofibrosis in February 2013, I began a low-dose regimen of Jakafi to shrink my spleen, ease bone pain and night sweats.
My last Behcet’s encounter was the first week I started Jakafi. I hit it with prednisone to keep it from going full flare. It subsided within 4 days. I haven’t had another flare since.
Apparently, there has been research on the JAK pathways and their relationship to auto-immune diseases. Pfizer now has TV ads for Xeljanz (tofacitinib), a “JAK inhibitor for Rheumatoid Arthritis.” RA is another auto-immune disease.
I realize that I am but a sample of one, but this experience gives me solace that my hunch that these two rare/oddball diseases share something in common. The JAK pathway!
When Focus Needs Perspective
We are living in a most remarkable time of scientific discovery.
Researchers are able to focus on changes at the molecular level and tie to proteins, genes, kinases and other terms I can barely pronounce.
Many times I’ve been frustrated by the very narrow scope of this research because it doesn’t help me NOW when I’m hurting.
I must remember the adage: Follow the money.
Research funding is tied to very specific research questions and tight timeframes, influenced by the funder(s). Funding is extremely competitive. And those research dollars rarely fully-fund a project, much less encourage researchers to follow new paths that emerge as they do their work.
So blood cancer researchers continue their diligent work and auto-immune disease researchers continue their work. All the work is vital to understanding the disease processes which will ultimately inform us on effective prevention strategies.
At the same time, a funding mechanism that supports tying all this knowledge together must occur to make the whole larger than the sum of its parts.
Stand Up to Cancer is a funder of innovative and collaborative research and information sharing among experts of different types of cancers.
Perhaps it’s up to patients/trial subjects (whole beings) to share our experiences, observations and questions. We can help the subject matter experts “connect the dots” in ways that may be outside a study protocol, but useful nonetheless.
After all, we are not only the patients, we are the consumers of the eventual treatment or cure.