Hi
Hi platelets haven’t been dropping and now at 1800. Taking two aspirins and interferon peg for 2 months at 180 weekly dosage. Dr has now raised to 1 x 180 shot and mid week 135 shot. Has anyone else done this? Have you gad many sideaffects? . How long til numbers start dropping. My son is 19
My pega took a long time to kick in. I was on Pega and Hydroxy, eventually they reduced the hydroxy and I was on 135 pega, then reduced to 90, my hct went up slightly, so back on 135.. 2 months could be a bit early.. Hang on in there...
I personally would stay at 180 mcg per week for at least six months because the risk of very uncomfortable side effects is too great if the dose was raised higher.
Hello Maccamum,
Sorry to hear the counts are not yet dropping, but IFN is slow acting. There is a new treatment for CALR in clinical trials: clinicaltrials.gov/ct2/show...
Bigcheat
that’s a high dose, even 180 is, 2 months isn’t long, it can take many months or a year or even 2 for Peg to really kick in completely, can he add something else to lower the platelets while Peg is getting there
I agree with Ainslee. Maybe worth discussing adding in hydroxy for a little while instead of increasing peg dose
Will say some prayers for him, but my MPN specialist said same thing everyone else is saying it takes time. May just need to give it longer. And I don’t know about anyone else my platelets were always so bad and I was always in a state of panic as I would never know what they were going to be. I have had so much anxiety and on lab days I was almost in a state of panic Just now I feel like I can breathe because I got to start Besremi. I felt like my anxiety made my labs so much worse. I could only imagine going through this as a parent. I am grown, but feel it has been as hard on my mom as it has been me at times. I wish y’all the best. Hopefully it just needs time.
Peg interferon
1st Peg
Peg jab
Switch from Peg to Besremi
Peg interferon
