u/horsecrzy

Hey MPN brothers and sisters. 58F Jak2ET. So after almost a year since dx I finally got to see an MPN specialist today. I requested a referral months ago but my hematologist asked me to give him 6 months. The hematologist prior to him told me to my face that she did not believe me when I described my symptoms. The specialist first scared the hell out of me when he explained how high risk I was for a stoke or heart attack and that the arterial clot I suffered in 2023 was a huge warning sign. He then pointed out that an interferon should have been my first line of treatment, not the HU and anagrelide that I could not tolerate. I will be starting Pegasys asap. He then outlined his intention to do everything he could to alleviate my symptoms not just lower my platelets, which have been climbing quickly since stopping anagrelide. There was a lot more conversation but bottom line is that if at all possible, insist on seeing an MPN specialist. This is the first time I have had hope and had my eyes opened all at the same time. And drink lots of water and do your cardio! Happy Fourth of July❤️

I started HU on March 1 and after 30 days I had to discontinue due to severe and I do mean severe flu like side effects. My hema thought it best to try Anagrelide since interferons can cause similar flu like side effects. I am in a lawsuit with my employer so I am worried my health insurance will end this month. Anagrelide is inexpensive and the only side effects I’ve noticed is a faster resting heart rate, pounding heart beat, and nightmares. I have an extensive family history of heart disease so this worries me. I was wondering what Jak2 carriers have experienced with Besremi. I feel like I should at least give it a shot since my platelets are within normal range for the first time in at least 8 years and insurance will cover it for now. Plus my symptoms are still lurking around.

So I have noticed over the last two years that I have memory lapses and trouble with recollection. The upside is that I can watch the same shows over again like they are new lol! I frequently have gaps in my memory especially if I am relaxed and have had a drink or two. Not slammered just a couple of glasses of wine. My husband loves it because he can play dumb if he said or did something stupid and I don’t remember a thing other than the fact I’m pissed and don’t know why. Is this normal???

I am 58F with Jak+ET. I started Hydroxyurea 30 days ago and noticed neck, shoulder, and back pain and stiffness after a week or so. I figured it was just normal for me so I kicked up the workouts. 5 days ago I got a splitting headache that won’t stop and my pain increased greatly. Now I have even worse fatigue, low grade fevers, and constant chills, and threw in some nausea. I have lived with chronic pain for years so when I say this is the worst I have ever felt, it’s bad. Anyone else have these type of reactions?