A month on ruxolitinib/Jakafi

[sbs_patient]

I had blood work this afternoon after my first five weeks on ruxolitinib. The key numbers are now all at or near normal: HCT 39.5, RBC 5.16, PLT 385, WBC 11.20. The medication seems to be working as predicted. Side effects have so far been pretty minimal. I'm very pleased, even given the high cost of this medication for patients in the US. I'm hoping that things will stay this way!!

[hunter5582]

Great news! Glad to hear it is going so well.

[Sewingtime]

I'm so pleased for you! It has worked a treat for me too. The only thing I've noticed over the last year on Jakafi is that sometimes we have to tweak the dose. After a while on one dose, it starts to work a little too well and my counts end up a little low, so we have to adjust. But it has worked very well for me overall, and itching is a thing of the past. I hope the prescription drugs provisions in the new Inflation Reduction Act will kick in and start to reduce costs for you over time. I am still covered by my employer but will need to retire too one of these days! Helen

[sbs_patient in reply to Sewingtime]

Helen, I'm so glad to hear that Jakafi has been working for you for so long. My doctors now feel that since my platelets have come down so quickly, they want to do another CBC in two weeks to see if they need to adjust the dose. The only side effect that I've noticed so far was a spell of diarrhea. I've been dealing with irritable bowel throughout my adult life, so my intestines are likely to be easily affected by new medications.

I am hoping that the Inflation Reduction Act limits will actually survive to go into effect in 2024; they will make a big difference. If you can take your employer-based health insurance into retirement, you may have protection against the high cost even then; I've heard that this has worked for several people.

Steve

[Owl-fan]

That is great to hear! I'm glad it is working for you. I am about to start Jakafi next week. I've been on hydrea for 11 years and been doing phlebotomy for about 10 months now. Still having symptoms so Dr thinks it's time to move to Jakafi.

have a great day!

[sbs_patient in reply to Owl-fan]

I had been on HU for about six years, and it was no longer doing much if anything for me. So far, Jakafi is working well. Good luck!!