After 2 years on Hydrea for CALR ET, 4 weeks ago I started jakafi 10mg twice a day . Getting cbc every two weeks has shown platelets increasing each time. When I started they were 620ish, 2 weeks later 702, Then yesterday they were 820. Now doc wants me to go to 15mg twice daily.
I’ve been feeling a little better even though platelets are going up.
Anyone else have a similar experience?
George
A initial temporary jump in platelets is very common on starting Rux, my jump was about 6 weeks but we are all different, mine went from 600 to 770 before slowly coming down to now 200, I have PV. It may be yours would have come down again without increasing to 15mg BID, be careful too much Rux doesn’t drop your other counts too much. I am sure you are aware of that.
thanks Ainslie. I will ask my doc if we might wait another two weeks at 10mg x 2 daily.
2 weeks may not be enough , another option is to do 15+10mg, if the 10+10 doesnt work, 10+10 to 15+15 is a 50% increase. Your haem may have his/her reasons though, worth discussing
why jakifi. I’m also Calr ET. I thought it was for PV or MF. I’m now on Peg and LOVE IT!
thanks for the reply Wyebird. I should have added before I was on HU I was on Peg for 4 years, 45mcg weekly. Towards the end it began to give me a neuropathic reaction in my legs mostly that was very unpleasant and had to stop. Was good while it lasted. Glad it’s working for you.
oh no, I hope I don’t get that
Hello George. I’m in the UK. I was diagnosed with CALR +ET at the end of 2021. Pescribed Pegasus interferon alfa2a every 2 weeks and small daily dose of aspirin. I was 78+ years of age when diagnosed, completely by accident. I eat, drink and am merry.
Thanks for the reply gilded . 4 years of 45mcg Peg weekly began to give me a bad neuropathic reaction in my legs. I had to stop. Was very good while it lasted. Glad it’s working for you.
Similar for me. It wasn’t until I did 20mg that I saw decreases in counts and that is my current dosage.
Note on side effects - I recently switched back to Jakafi from Besremi due to terrible headaches. With Jakafi at 20mg, the only side effect issue I am having is that it seems to trigger the reactivation of cold sores. There are some medical articles talking about how Ruxolitnib can do this as it lowers Tcells, etc… which we’re keeping HSV-1 dormant. Sort of annoying but I will take it any day over the excruciating headaches…. I am hoping that once my blood counts are in normal ranges I can lower the Jakafi dosage back down a bit and the cold sores will be suppressed.
Having PV and finding the right medication and dosage is such a delicate balance.
I did same experienced 2 yrs ago, and the dose of Jakafi up from 10mg til 20mg twice, but the HCT and PLT keep up, even support with phlebotomy.
Problem solve with combo JAK 10mg + PEG 135mg.
Blood profile all in normal range in a year now and almost all simptoms disappear
Hope you could find better solution.
cheers
Thanks for the reply William-Indo. Very interesting to hear you’re combining jak and peg. Glad you are doing well.
I was Dz in 2016 with PMF started on Hydroxi Urea and Eprex . Early this year was started on Jakavi at 25 Mg 2x daily with 500 Mg Hu daily. Now Jakvi is down to 20 mg 2x daily with Eprex Injections 2 x weekly. I am presently doing transfusions weekly again, but have only needed this 3 times this year, with tomorrow being the 4th time. Between weekly bloodtests and transfusions we spend a couple of hours a week just travelling to the hospital.
Interesting to see you on HU and Rux. And Eprex All the best to you.
Scuba & MF while on Jakafi?
besremi or jakafi
hip replacement with jakafi controlled polycythemia
