Low Platelets

[marlenablue]

Hi all,

I was diagnosed with PV about 10 years ago with platelet counts in the 800-900 range. About 3 years ago, my white blood cell count started creeping up too. Last spring, I got the opportunity to try Besremi. After 7 months, I am seeing normal white blood and red blood cell counts, hurray! But my platelet count is 53 as of today. My doctor has advised me to stop Besremi all together and get tested again to see if Besremi is causing the low platelets. I wasn't expecting to stop. I am worried and disappointed and upset. Has anyone else experienced something like this? I am struggling with the unknown and staying positive is not my strength

[EPguy]

I'm on Besremi also, and like you I hope I can stay on it.

What was your dose? Did the PLT go down suddenly? Was it after change in dose? a reduced dose might make sense after the pause if Dr agrees.

Are your CMP numbers (Liver etc) ok?

--

In a search there is a rare reaction to IFN that can cause reduced PLT called "Immune thrombocytopenia"

This report is really old, (1985) but I see similar discussion in newer ones, prednisone comes up in most of them (splenectomy is no longer a typical modern treatment):

"Four tolerated re-treatment with interferon, two with concurrent prednisone administration and two others following splenectomy.".

jamanetwork.com/journals/ja...

So it's possible that prednisone might help you resume treatment, it's worth discussing with Dr.

[marlenablue in reply to EPguy]

Hi EP guy,

I started Besremi in March 2022 at 100 and then increased 50 mcg each dose. I have been on the max dose 500 since Jun/Jul. The platelets started going down actually before the Besremi but were still high. I remember being concerned about the change then. This Aug they dipped to 129 and then September 100. November/December I saw 60 then 50. My AST did increase slightly at first but then went down to normal. My other CMP numbers are normal.

I did read about immune thrombocytopenia and felt some comfort that this platelet change could be attributed to something besides leukemia. Thank you for the link, I'll check it out.

Good luck to you on your Besremi journey! How long have you been on and are you finding it working? If it has only been a few months, don't get discouraged if nothing is happening. It took awhile for me to really see results.

[EPguy in reply to marlenablue]

If you would like I could make a plot of your PLT counts over time, if you don't already have that. This would give a good feel for the trend thru the time before and after starting Bes.

With this sort of plot I found my RBCs and WBCs were falling toward normal before I started MPN therapy.

If you want to know what's up with more certainty a BMB could be worth discussing with Dr. Have you done one prior to starting Bes?

Thanks for the good wishes. I've had good response on both HU and Bes so far, including a reduction in Jak2 on Bes. But I have found my max dose (140) where WBCs are getting low, and feel best at 120 or less. Low WBC on IFN is more common than too low PLT, but the immune thrombocytopenia is worth looking into.

[marlenablue in reply to EPguy]

I'll definitely mention the immune thrombocytopenia. They're going to do a BMB very soon. Thank you for your support and best of luck to you.