Besremi 50 mcg

Posted by conniekostiuk @conniekostiuk, 4 days ago

I was on Besremi at 200mcg. Started getting bad back pain. My oncologist put me on a 40 day hold. I went back on at 100mcg. The back pain is coming back. Is anyone on 50mcg? I'm wondering if 50mcg can be beneficial in our blood numbers. I have Pre Fibrotic Primary Myelofibrosis. Ty!!!

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nancyra | @nancyra | 3 days ago

I have been started on 50mcg in Sept and only have had 2 injections so early days to tell. Have bloodwork Monday before 3 rd injection
Will keep you posted
My platelets are at 1.1
-ET calr

gramk | @gramk | 3 days ago

I’ve been on Besremi for 3 years at 250mcg, no side effects……at least that I can point to from the Besremi. Feeling much better than when I was on Hydroxirea for 2 1/2 years.. my platelets remain in normal range now..

treeore | @treeore | 3 days ago

I'm on Besremi once a month, alternating between 50 and 100 mcg. It has over time corrected the platelets and HCT and is holding steady. Red blood cells never corrected, but doctor feels it is a success nonetheless.

gramk | @gramk | 3 days ago

In reply to @treeore "I'm on Besremi once a month, alternating between 50 and 100 mcg. It has over time..." + (show)

@treeore My red blood cells are not corrected, but hematocrit needs to drop more before I can go to one injection a month. But when I went to Phoenix Mayo my Doctor told me people had gone into remission with Besremi and she had worked with the drug during clinical trials, which I think is about 7 years. Which is very encouraging. My Doctor is very happy with the results so far. Do you see a Doctor at Mayo?
Kathy

treeore | @treeore | 3 days ago

I did a long distance appt with a nice Mayo doc when I first got the diagnosis ; I was terrified because I did not live near a teaching hospital. I have not been back for a Mayo appointment, but maybe I should. I was going to start asking my local doc to let me off Bes when I get to year 5, as that is the number of years "on" that I recall hearing as offering a good chance of at least temporary remission. I think you are saying 7 is the better estimate.

conniekostiuk | @conniekostiuk | 2 days ago

In reply to @gramk "@treeore My red blood cells are not corrected, but hematocrit needs to drop more before I..." + (show)

@gramk yes. I have a zoom appointment coming up. I can't wait to hear what they have to say.

gramk | @gramk | 2 days ago

In reply to @conniekostiuk "@gramk yes. I have a zoom appointment coming up. I can't wait to hear what they..." + (show)

@conniekostiuk
My Mayo doctor also zooms with me. It’s a great way to keep on top of things. K

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