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

Posted by cindyem @cindyem, Oct 26, 2024

I was wondering if anyone can share their experience with Ojjaara treatment. I started having anemia, high platelets, and high white count two years ago. They finally did a bone marrow because I had a JAK2 mutation. The diagnosis came back as PM low risk. I felt fine.
Now my spleen is enlarged, I’m annemic again, and I’m having non intentional weight loss. To me I believe the weight loss is muscle mass.
I have been referred to a Mayo Clinic specialist, who has ordered Ojjaara to be started next week followed by weekly blood tests. He’s also had CT scans done in advance of my spleen, renal system, and liver. I feel I’m in good hands with his thoroughness.
Let me know what side affects you experienced. Thank you.

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snakebite | @snakebite | Mar 19 9:27am
In reply to @snakebite "Hello Cindy; It sounds like you have a doctor that is doing a good job for..." + (show)
@snakebite

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

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It's 4 more months on Ojjaara and things are still looking good!

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cindyem | @cindyem | Nov 16, 2024

Thank you for your response. This is my third week on 100mg and I am doing well. After three months they will decide if I should go on 200mg. However, I did get a bladder infection. Hope that is islolated. Do you mask up whenever you go somewhere around people? Not sure how low my immune system will go.

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leighwalters | @leighwalters | Nov 16, 2024

I have been taking Ajjarra since March of this year. The 200 mg dose was too strong and I kept coming down with flu like symptoms. I’m now taking 100 mg and feel much better. You can take it either way or without good. I recommend taking the pill right after dinner 🥘

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cindyem | @cindyem | Nov 16, 2024

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

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leighwalters | @leighwalters | Nov 15, 2024

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

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leighwalters | @leighwalters | Nov 15, 2024
In reply to @leighwalters "Yes at 100mg there were no side effects." + (show)
@leighwalters

Yes at 100mg there were no side effects.

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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.

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leighwalters | @leighwalters | Nov 15, 2024
In reply to @colleenyoung "@leighwalters, are things better with the lower dose?" + (show)
@colleenyoung

@leighwalters, are things better with the lower dose?

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Yes at 100mg there were no side effects.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 15, 2024
In reply to @leighwalters "I found the drug to be very effective, however the side effects caused repeated viral infections...." + (show)
@leighwalters

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

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@leighwalters, are things better with the lower dose?

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1 reply
leighwalters | @leighwalters | Nov 4, 2024

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

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1 reply
cindyem | @cindyem | Nov 4, 2024

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.

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