Interferon use in PV – A Patient’s Perspective
by Riggins Black
Looking back at old CBCs, I found I “might” have had PV since 1971. By the way, this is a good reason for you all to become guardians of your medical records (no one will preserve them as well as you can). Although I’ve always had burning in my feet, 2001 I went to see experienced hospital neurologist. He could discover no reason. One night, 12 years ago a splitting headache took me to the hospital. I was given gadolinium (an irritating IV medication) and the next day I had a blood clot from my wrist to my neck. At that moment in time I requested an organized all my medical records and was shocked to find my hematocrit was extremely elevated. Even the professor of neurology (who had blood work for me) missed it.
In 2003 I started my PV journey. Incidentally, at this time my primary care physician found my calcium levels were very elevated. Long story short, I had a parathyroid adenoma (a tumor deep in my neck) which was subsequently removed. Intuitively, I knew that the surgery had greater risks for me but the hematologist I started with, upset that I wanted to try interferon, discharged me. I want you to know, I approach things from a gentle perspective, and gave him no reason to behave so unprofessionally. The next hematologist I chose was a lovely man, unfortunately had no clue about the myeloproliferative disorders.
As you can imagine, I had been reading up a lot on my condition. I quickly found a Dr. who is willing to try Intron A and I have been on it ever since. By the way, you all should be advised that a connection has been reported between parathyroid disease and myeloproliferative disorders. Albeit, not well investigated. In my mind, I felt growing up in Florida and developing minor skin cancers, later in life avoided the sun. Working, indoors, 8 to 10 hours a day, I was chronically void of sun exposure and my vitamin D dropped to nonexistent levels probably promoting my parathyroid adenoma. Could I have a proclivity for the myeloproliferative diseases and I missed out on the protection that a normal blood level provides?
If I’m going on too much, please tell me to keep my big mouth closed. Here’s the good stuff. My bone marrow biopsy from 2003 is no different then from 2013. Except for the neuropathy, which existed before I started interferon (mother and sister had it also) I have not had any apparent side effects from interferon. It took away the itching and dramatically shrunk my spleen.
In my mind, interferon is a very complex substance and has many potential positive effects on the myeloproliferative disorders and possible negative systemic side effects. I think it’s best to shoot for the smallest dose that gets the job done. Unfortunately, what are the criterions? In my mind, I think the smallest dose that keeps the itching away, controls the spleen, reduces or abolishes phlebotomies and doesn’t cause other significant medical problems (retinal disease, heart disease, liver disease, thyroid disease etc.) is what we should shoot for.
JAK2 is an indicator of disease whose final significance is yet to be determined. As our disease progresses, JAK2 tends to elevate. Question needed to be answered is “so what?” Therefore I don’t use it in my formula of approach.
Finally, in my story, I have tried to get all the other lifestyle, risk factors (do that Pap smear and get those colonoscopies!) and my emotional village in good shape (forgiveness-overlooking-accepting others with their faults-not taking myself so seriously).
I am now a retired chazzer and have learned to control what I eat. As I stated before I wish I did not have this disease (that I’m sure it would be something else) but I have met many many wonderful, courageous and interesting people. Bless you all.
Publisher’s Note – Disclaimer
Thank you Riggins for sharing your story! All of the first-hand experience you share may benefit other patients who are considering or already taking Interferon.
Please be aware the above story was provided by Riggins Black, a patient. The views above are not the views of PV Reporter and should not be construed as medical advice. Patients are always advised to seek medical advice from your physician. Any questions or decisions made regarding Interferon or any other drug should be discussed with your physician.