Jakafi and it's side effects?

[jointpain]

From what little I understand, Jakafi can and does reduce the fibrosis within the bone marrow while reducing the allele burden (number/percentage of dodgy blood cells producing cells) While taking Jakafi and Darbepoetin (an epo) there may be a conflict between the two drugs, one is reducing cells production and the other attempts to increase it. My wife is on both drugs, Jakafi since September, and Darbepoetin since December. Just prior to starting Darbepoetin she was getting what I think is bone pain in her thigh bones, while her Hgb was steadily dropping, since December, this pain has migrated to her pelvis. Her blood test this week showed her Hgb at an all time high of 123, and platelets had increased a touch, from prior to Darbepoetin to 343 . Could this bone pain be the result of the Jakafi and then the Darbepoetin sorting out her bone marrow??? And will the pain get any less?.

[ainslie]

I’ve never heard of Jakavi causing bone pain, MPN can cause bone pain. I would say your questions are probably better answered by a MPN expert, we can speculate on here but I would say it’s unlikely any of us on here can give you the answers you need.

[jointpain in reply to ainslie]

I'm not asking anyone to speculate, but if another member has experienced what I've described, I hope for an answer. I see you have been on Jakafi for many years, did your allele burden drop quickly or at all? My wife's was at over 70% when diagnosed nearly 7 years ago, I'd expect it was even higher at the start of Jakafi consumption. Trouble is allele burden isn't checked in Wales as far as I know. It was always refused when asked about. But thanks for your input.

[hunter5582]

The only warning that comes up with the combination of Jakafi and darbepoetin is this.

Monitor/Modify Tx darbepoetin alfa + ruxolitinib monitor thrombosis s/sx: combo may incr. risk of thromboembolism (additive effects). epocrates.com/online/intera...

It is worth noting that darbepoetin can have limb pain as an adverse effect. Jakafi can cause musculoskeletal pain. One very likely cause is the bone pain associated with MF. Best to review any new symptom like this with her MPN care team for the best answer.

Jakafi and Darbepoetin do not cause a conflict per se. People with MF may need cytoreduction for some types of blood cells while at the same time needing to boost production of RBCs to prevent anemia. It is a balancing act to keep the body's blood cells int he right balance. Combining a JAK-inhibitor with a RBC boosting frug is a common combination in treating MF with anemia. The good news is that there may be a better option available now. Momelotinib has an indication for MF with anemia. I would suggest that your wife review this option with her MPN care team.

Wishing you both all the best.

[EPguy]

I have not had bone pain. But on your interest for allele reduction, I've have like others here had good reductions on Rux. From 7% I'm currently at 3% thru ~18 months. I also had reductions on IFN, 14 to 7 or 8%. In some reports I've posted on Rux has its best effect with starting at 60% or lower. But these are generalities.