Platelets keep disappearing. Any one else have this?

[Dodders]

Post PV MF diagnosed mid 2017. Ruxalotinib from end 2017 until Jan 2019. Now on Pacritinib trial and into my 7th week. Hopefully heading towards transplant sometime this year but consultant very cautious because of gastric varices. My platelet count keeps dropping like a stone and so I am very dependent on transfusions. If Pacritinib does help it normally helps with low platelet count!. I had platelet transfusion 3 days ago but yesterday the count was 4! so I was given another transfusion yesterday. Today my count was (only) back up to 16. I have had some symptoms in the form of oral purpura but nothing else. Has anyone else had a similar problem? I am a bit anxious about bleeding with such low platelets although my varices are 'quiescent' at present. That's not to say I couldn't have a bleed elsewhere though.

[JediReject]

Hi Dodders, I experienced this post transplant when the transfused platelets simply disappeared. I needed a procedure and platlets were about 10 so had 2 or 3 bags late evening to prepare for surgery the following morning . Checked blood counts early AM and platelets were still 10. Explanation was that my spleen which was still massive but flatter was absorbing them.

As you have MF I guess you too have an enlarged spleen ? Which might be the culprit.

But why your platelets are so low to start with I don't know. Prior to Transplant I was on Ruxolitinib and my counts were quite good across the board.

Cheers - Chris

[beetle]

Hi. For one reason and another I have been unable to get on the pacritinib trial. My reason for wanting to get on it was to raise my platelet count. Perhaps I’m not missing out after all and the current plan for me is to stop Ruxolitinib and restart it to see if it will kick back into action. A bleed is a worrying situation with low platelets so I hope all goes well for you