Medicines for reducing fibrosis in polycythemia vera patients
I am a PV patient, currently age 50, JAK2 verified, producing a tremendous amount of red blood cells (started treatments at a 72% Htc). Besides this condition and its related symptoms, I am otherwise healthy, non-smoker, non-drinker. I am very shortly going to get a baseline for how much fibrosis has developed in my marrow. The standard treatment my doctor can prescribe (beyond the typical weekly phlebotomies and small aspirin) is Interferon-Alpha (INN) to prevent/reduce fibrosis and eventual myelofibrosis.
The doctor has informed me of the high rate of side effects for those taking INN. My problem is the effects may render me unable to earn income. Additionally, I won't be eligible for long-term disability through current employer until 2026. At the moment, the doctor isn't pressing for INN treatment as I'm obviously not the full myelofibrosis (MF) stage yet. I know it might be years before that happens, but I prefer to prevent it if at all possible (both MF and side effects).
I have been reading up on the Interferon-Alpha. I understand the basic mechanism is to make the overactive cells (typically cancer cells) prime targets for the bodies existing mechanisms to remove due to oxidative stress inside the cell. This makes sense to me, and I understand why it would also work for PV.
Are there other medicines that do this with far less chance of side effects? Yes. Are they approved for this off label use? No. Why? Because they're no longer patented so there is not profit motive for the trials [my reasoning though unprovable conjecture]. So, I'm finding myself in the position of wanting to try this same approach with a different medicine without any proof it working for PV. There are plenty of clinical trials with it being used for tumor reduction/suppression (not a cure to be clear) using the same oxidative stress mechanism. I suspect my doctor will not be able to endorse the treatment for many systemic reasons even if it was a good choice. I'm sure they have rules they must follow. I would share the decision with the doctor and I suspect doctor will still treat me even if I make this decision to try something for a year. If my follow up marrow examination one year later shows no benefit, I would then use take the INN route (I'd also have LTD at that point if I'm still employed).
It is over-the-counter in at least one state near me. It has 30 years of use in humans with even a few cases of some not-so-smart people mega-dosing it without fatality. I wouldn't be mega dosing, of course. But I would need guidance on where to even start.
Questions for the audience
1. Have you ever tried another medicine that has this off label use similar to INN? (Inducing apoptosis, increase ROS inside overactive cells).
2. Did it work for your case of PV in reducing JAK2 presence and/or fibrosis progression?
3. Did you get a doctor's guidance for dose? Please provide a doctor link if possible.
I appreciate all advice on this. I'm a data and facts driven person so my decision would only be as good as the data and facts I read.
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