I have been on OJJAARA/ Momelotinib since November, Everything was going along well until January when I got A1 Flu and Pancreatitis. Since then I have had uncorralled blood pressure , high protein in the urine , the pancreatitis has not yet subsided. My blood counts are low and I am still Anemic. Moffitt insists that none of the issues are decease or drug related.

Thanks, Janet! I hope the Ojjaara works well for you!

I have been able to get the drugs from Vanderbilt pharmacy in Nashville. The co pay is expensive. I don’t think I have had noticeable side effects Good luck to your husband with the stem cell transplant.

Hi Janet,
My husband was recently diagnosed with PMF with anemia, and Ojjaara/momelotinib was the drug all his doctors recommended for him. (His is an aggressive form, so we are also in preparation for a stem cell transplant.) The worst side effect of the Ojjaara was extreme frustration trying to get it approved and the prescription filled through our insurance company. It took three weeks just for them to deny the prior authorization request. We ended up getting a free month's supply directly from the manufacturer (GSK) while we submit our appeal. (If this happens to you, look into their "quick-start program.") Other than that, the actual side effects have been minimal. He said he felt a little woozy a few hours after his first dose, but there was really nothing after that, and the symptom improvements have been noticeable already, even though it's only been ten days. His itching got a lot better almost immediately, and for the first time in months, his anemia has improved slightly. In another MPN group, one person had no side effects, but another person had extreme nausea and headaches (but only after the first dose). Your mileage may vary. Good luck getting the drug(s) you need, and I hope they work well for you!
Best,
Jen

Hi Janet,

I don’t know too much about momelotinib except what I’ve read. I do recall someone on this site, LouiseHaugh, who successfully took it for multiple years as she was part of the clinical trial. It does not seem like she has been active on the site recently, so not sure of her current status.