Besremi : anyone else on besremi and being weaned... - MPN Voice

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Besremi

Ggrana3192 profile image
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anyone else on besremi and being weaned off hydroxyurea then the numbers are creeping up? Finally after nine months of besremi my platelets were in the normal range then climbed 600s two weeks later now 700s after another two weeks i’m so disappointed I keep crying

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Ggrana3192
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EPguy profile image
EPguy

I've been through the HU/Bes transition. In my case the blood counts have stayed ok as of about 8 months on Bes. But I've also had slowly increasing doses, currently 140 which is a lot for me.

The Rx has the dose being increased until the blood counts are good and stable, up to the max of 500, the whole syringe, or till the dose is no longer tolerated.

What is your current dose, and has Dr discussed increasing it since the recent change to your PLT counts? How are your other counts?(WBC, HCT)

Ggrana3192 profile image
Ggrana3192 in reply to EPguy

I’ve been on Besremi since January, I will be doing 500 mcg tomorrow . My white count is currently normal and hct is 32. My platelets are 761. They had reached the normal range of 400’s but last month went to 600’s now 700’s . My counts are checked every two weeks before my injection. It’s so disappointing to see this after being 400’s after 9 months of starting Besremi.:(

EPguy profile image
EPguy in reply to Ggrana3192

You should have quite good data with CBCs every two weeks. Is HCT of 32 normal for you? Minimum for women in general is about 36 so 32 seems low. It suggests the Bes is working (too) well on the reds. How is your Hb? Dr should be watching your reds level. For some HCT control has been slow with Bes, that's not your issue here.

Were your whites out of range in the past? On HU? We all can learn from each other.

500 is the "whole bottle" as I call it. It is an officially published dose, but also is the max in the Rx label. It seems your dose is being set specifically for PLT control. Did your PLT start to rise when, or a month or so after, you quit the HU?

What is your Dr saying?

hunter5582 profile image
hunter5582

It is normal for platelets to cycle to some degree. They can actually vary by as much as 100K in a single day. If your PLTs are cycling up, it could mean there is something going on in your body causing reactive thrombocytosis. Infections, phlebotomy, iron deficiency are just a few possible causes. It could also be that you need dose titration of the Besremi. This is also quite common.

Treating PV is a marathon not a sprint. Sometimes we have to contend with big hills and figure out how to manage it. As EPguy suggests, it is time to talk to your MPN Specialist about the increase in PLT and also look at the rest of your counts. Understanding what is going on requires the context of all of the various counts of body function.

Please do let us know what you learn and how you get on.

william-Indo profile image
william-Indo

Please do not too worry about your PLT.It is common up and down but yours still in save level.

Keep out from stress and enjoy your life.

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