I read some of the posts here on a daily basis, but don't post very often -- mainly due to lack of time since I'm working full-time and trying to manage my various conditions. My bio provides the details. One day I hope to be able to participate more fully!
I currently manage my PV with an anti-coagulant and phlebotomies every 3-4 months. My platelets have been in the 700's for more than a year now. I've been contemplating for a while whether I should give Pegasys a try to see if lowering my platelet counts will improve how I feel on a daily basis. The main issues are fatigue, tingling sensations (particularly in arms), and Raynaud's. As well, I'm iron deficient with ferritin typically under 10. I'm reluctant to try hydroxyurea since I enjoy being outside and there is a history of skin cancer in my family. Also, I'm interested in the possibility of remission that Pegasys can offer.
Note that I have discussed this with my regular hematologist and an MPN specialist. They seem to be willing for me to try the Pegasys. I'm in Canada, but am fortunate to have private health insurance through work that would cover the cost.
I have a couple of questions that I'm hoping I can receive some feedback on:
(1) Has anyone with autoimmune issues been able to tolerate Pegasys (or another interferon) without any major issues? I'm asking this because I am dealing with some sort of autoimmune issue at the moment brought on by a Covid infection in spring 2022 (see my bio for details). I have also had hypothyroidism for decades but it seems to be well managed by medication.
(2) If I'm already fatigued, will Pegasys improve the fatigue or make it worse? I know this can be dependent on an individual, but just looking for some member experiences.
(3) If I try Pegasys and end up having intolerable side effects requiring me to discontinue its use, is there the potential for any long-lasting negative consequences?
Thank you for your time.