I believe you’re absolutely correct about something causing inflammation in your body and spiking platelets. I had a Shingles shot and my entire body was inflamed. I felt pain in every bone in my body that I’ve never felt in my life! I also started exercising vigorously and had to change it to moderate because of bone pain. I don’t know if this caused my platelets to spike but since I switched to moderate exercise the pain has become less severe. I’m taking Vitamin D and stopped taking an iron supplement because my Ferritin Serum was high indicating iron overload. I don’t know what I would have done without this forum! Thank you! 🙏🏼

I'm in a clinical trial for inca033989 thru dana farber. I get an infusion every two weeks. I have no side effects at all, but it has stabilized my platelets counts and normalized all other blood counts. Other than the inconvenience of getting the infusion, which is 2 hours away, I am very pleased with results. I have had ET for 12 years and hydrea wasn't working anymore and causing anemia.

Praying for a cure! 🙏🏼

AgapeLove. I was lead to believe that there is a link between general health and fitness with tolerance of meds. That's to say, the fitter you are, the fewer side affects your likely to encounter.

The one and only piece of advice from my consultant was 'get yourself as fit as you can'.

I swim, I cycle, I walk and I do gymwork, I seem to have gotten away without any side affects, I also had the two stage shingles shots (shinglex?) And that didn't touch me either.

If you can tolerate the excercise, and many can't, keep it up, I'm convinced it leads to better outcomes all round.

This sounds very exciting.