The transplant team wanted to increase my Rux to 10 mgs which has been really good for me. So much energy hardly any symptoms and overall feeling better. The fly in the ointment is my blood levels are dropping red cells were 80 and my platelets were in the 30’s. My Haematologist said the cut off for me to start blood transfusion was 80, but was happy to carry on the treatment and to have more bloods done in 3 weeks time. So fast forward my red cells have dropped to 76 and my platelets are 34. Haematologist told me to stop my Rux and made arrangements for me to have a transfusion.
Within a week, sadly my symptoms have returned. After my transfusion my red cells are 98 and my platelets are 30 started back on Rux 5 mgs to help with my symptoms.
The Good news is I have now been given a provisional date to start my stem cell transplant 17th November. Have to have another bone marrow biopsy and some tests on the 14th November ie Covid, flu etc, so things are moving on.
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Grizly
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Your Ruxolitinib definitely shouldn't have been stopped abruptly, if that's what happened. Mine was tapered over two weeks just before the transplant and I felt really ill.
At least you have a date - I found it scary living with very low platelets, so do take care (Mine went down to 16). Wishing you the very best, Jennie
Pray you get all the help and care you need as you start this process and that you have a great team working with you. It's good to know that you have a date now.
I too had dropping platelets with ruxolitinib, though not as low as you and was changed to fedratinib. I believe there is another approved drug available as well. In .my case it was to bring my spleen down before the sct. In the end they shrank the spleen with radiotherapy the week before the transplant. Your transplant is not far away now so good luck
I wish you all the very best with your SCT journey, I too am in discussion with the transplant consultants and waiting on tissue typing tests of my siblings so some way behind you but living in hope.
First, love your name. 😊. Want to thank you for sharing your journey. I am hoping in November you have wonderful results. I don’t have any experience with the drug you were taking, but want you to know I care and am rooting for you going forward. Please keep us updated. Hugs Christy
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ET Jak2 positive issue with red blood cells 
starting hydroxy as pathway to Rux
Rux and Hydroxy
