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

For me Ojjaara was a game changer. I went from hgb 7- to 12-13, and it has held for over a year. My major spleen issue went away. I've expanded on my case in several post so I won't go through all of that again. But the bottom line is that I'm 78 yrs, been fighting MF for MANY years. I was down to surviving on Transfusions and Ojjaara turned all of that around. I now have a more than normal life for a 78 yr old. I walk 2 mi every morning, attend a full exercise class three time a week, travel in my RV, and have resumed my competition action events at the World Games and other events around the Western US. My side effects are well worth it, and so far very manageable. IMO, Ojjaara is well worth trying. It has completely changed my life. Don't know how long it will last, but for now I'm enjoying life to the fullest.

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