I'm a 51yo Calr type 1 and started Peg one year ago in July due to a cardiac episode...."MI". I started on 45mg quickly working to 180mg once a week. When I started my platelets were 900 to 985 and stayed in the 900's for 11 months on 180mg. I didn't experience bad side effects nor did my other counts react, really I saw no changes at all. starting the first week of July (this year) my platelets moved down to 685, I was pretty excited with that but didn't get my hopes up to much. My next labs at the end of July showed my platelets at 188. This was the first CBC within normal limits since 2018. Such a quick drop did worry my doctors some so we went to 90mg weekly, since then I have I have had 4 maybe 5 doses at 90mg and my platelets have stayed in the 300's. Although my liver alt and ast have gone up some to 66 and 120 but they haven't moved in the last couple labs. At this point we will continue to monitor my liver. If my alt and ast continue to go up we will lower the peg dose, we are all in agreement that under 600 with my platelets is acceptable. We may move in that direction just to keep lowering the peg dose anyway. personally I would like to see 45mg weekly but we will see. I wanted to let others know that have stubborn platelets to hang in there, you never know when or how fast they will go......Stay well.
Took some time but my platelets finally dropped ... - MPN Voice
Took some time but my platelets finally dropped on Peg
That is terrific news! Thanks for sharing.
Thanks! It is good to hear these experiences as they give hope to those who might be on an INF and not seeing immediate or near-immediate movement. It took a little while for my numbers to come down as well. Started on 180 mcg every 2 weeks but my liver did not like that so we dropped to 90 mcg and a year later my platelet are WNL for first time in over a decade.....some times slow and steady is the best plan - if numbers continue to hold over next 6-9 months we will retest the allele burden as well as see if we can drop down to 67 or 45 every two weeks.
CALR et here too. Just started pegasys 6 weeks ago. 45 mcg weekly. First blood check since starting is 9/20 and I’m hopeful things have come down so I can start getting off HU. 🤞🏽
Congrats on your treatment success and hopefully it is long lasting. ✌🏽
Well done I have been 45 monthly on peg & count is 450 but I happy at that level so are MPN 👍
Great to hear. It took mine about 2 years to act😂
Your story bolsters my hopes. ET, Jak2, I am 6 months on Peg, gradually increasing dose, now at 153 mcg/week and expect to go to 180 soon. The Pegasys hasn’t kicked in yet, but I am determined to stay the course. Thanks for giving me hope!
I am so happy to read of your success on IFN. Patience and perseverance are critical success factors for sure. Thank you for sharing. Renewed hope for those of us who are earlier in the treatment journey. Congratulations!
on IFN but now platelets rising!
Peg update suprize
Pegasus and Liver Function
Peg reduction
