peg dosage raised-

[Maccamum]

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

[shiftzz]

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...

[monarch5000]

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.

[Bigcheat]

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

[ainslie]

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

[Hopetohelp]

I agree with Ainslee. Maybe worth discussing adding in hydroxy for a little while instead of increasing peg dose

[KLCTJC]

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.