Questions & Answers

The last time I went to MD Anderson, a little over a month ago, I complained about bone pain. Bone pain is different than muscle pain and nothing over the counter seemed to work at all. I was not interested in narcotics, just a little relief. My doctor told me to try Claritin or the generic version of it. Took about a week but the pain is very much improved, almost gone. I take one every morning. Maybe this help help someone else.

Hi everyone
This is my first post on here. I hope you don’t mind me adding you to my MPNteam. Looking forward to hearing from others with a MPN especially those local to Northampton.

I have PV high platelets and high HCT at the moment and I’m in a lot of pain and I need to take something. My doctor did say it was all right but I just wondered if it’s OK to take with aspirin or if anyone else does. Thank you.

Anyone that has been on hydroxyures that had to switch to interferon have any bad side effects?
I have been told I may have to switch for my ET treatment and am wondering what side effects should I expect?
Thanks

I have had the condition since 1970, finally diagnosed with it in 2017, rather than Neurofibromatosis NF2 which I was wrongly diagnosed in 2006, I have had three surgical removals to remove schwannomas in 1970, 1997 and 2012, I have NEVER met anybody with the condition EVER, or been in contact with someone who had this particular plight?

My husband, 4-5 months on Jakafi, is frustrated with the side effects. We thought he would adjust but that hasn’t happened. His numbers have come down to normal range, even below normal on the HCT. He thinks his Jakafi dose needs adjustment. He’s currently on 20mg twice a day. Has anyone lowered their dose and had fewer side effects as a result?