Primary Myelofibrosis with JAK2: Anyone have Ojjaara (momelotinib)?

@cindyem, I extended the title of your discussion to see if anyone else has had Ojjaara (momelotinib) offered yet as a treatment option. I think @snakebite was looking into it.

Cindy, how are you doing on Ojjaara (momelotinib)? What is the treatment schedule?

My prescription, Ojjaara, arrived late so this will be day three. So far so good. Only a little GI trouble. I’ll let you know in a couple of weeks how it is going.

Hello Cindy; It sounds like you have a doctor that is doing a good job for you. I'm happy for you. I've been dealing with MF & MDS for MANY-MANY years. It moved slowly, but did indeed drag me down. Being anemic is part of it. I've used many drugs over the past 17 yrs to combat the symptoms. My spleen was so large that they were on the verge of removing it. I was put on Vonjo, and within a few weeks my spleen started shrinking rapidly. My condition improved considerably, though still far from being good, I found that I could keep my HGB in the neighborhood of 9-10 while using the Vonjo along with injections of Aranesp & Reblozyl. This lasted for about 3 yr, and then I started Chemo with Dacogen. Over time my condition once again started downhill, rapidly. Platelets were extremely low, WBC, RBC, HGB, all were so low that it looked like dooms day. I had been told about a drug called momelotinib, but it was stil in trail and had not yet been approved by the FDA. Well, about the time I was at my lowest, it was approved, and my doctor immediately started me on it. Within a couple weeks I felt a better, within a month my CBC was better than it had been in a very long time. Within two months my numbers were so high that I did NOT qualify for either the Aranesp or the Reblozyl. My numbers have continued to shoot up, up up. For the past 4 months my CBC has maintained a almost normal level. HGB has maintained above 13... this time a year ago I was getting Blood transfusions every 1-2 weeks. I feel better than I have in over 10 yrs. My energy level is wonderful compared to just a few months back. At 77, I now have found that I'm actually a old man, and am dealing with regular OLD MAN problems. HA HA! I don't know if or how long this Ojjaara will work for me, but for now it is wonderful. I hope it help you as much as it has me. Remember to trust in God and maintain Hope. Doug

Thank you so much for your positive comments on Ojjaara. For two years I have not received treatment for myelofibrosis, but also felt fine. Now that my spleen has continued to grow larger and I’m losing weight, my doctor offered treatment. I was worried, so your response gave me hope.

I found the drug to be very effective, however the side effects caused repeated viral infections. I started at 200 mg and now take 100 mg. Once a day

@leighwalters, are things better with the lower dose?

Yes at 100mg there were no side effects.

I really can’t tell the difference between the 100 and the 200 mg pill. At 100, it is working fine and I’m starting to feel better. I was getting a transfusion once a quarter and now, I’m good.

It takes some time for the ojjaara to work.you have to give it at least one month before it becomes effective

Thank you for your feedback. I’m tolerating Ojjarra real well but my platelets are still climbing. I feel great.