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Momelotinib

Posted by davi0937 @davi0937, 3 days ago

Hello

Is anyone taking momelotinib aka OJJAARA? I’m interested in your experience- does it reduce spleen and what side effects did you have that might have gone away or what side effects do you have.
Momelotinib (sold as OJJAARA) is a targeted prescription medicine used to treat adults with intermediate or high-risk myelofibrosis who have anemia. It works as a JAK inhibitor that reduces an enlarged spleen and improves red blood cell counts.How to Take ItDose: 200 mg taken by mouth once a day.Food: Take with or without food.Instructions: Swallow tablets whole; do not cut, crush, or chew.Common Side EffectsDizziness and extreme tirednessLow blood platelet levels leading to bruising or bleedingBacterial and viral infectionsDiarrhea and nausea

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Lori, Volunteer Mentor | @loribmt | 2 days ago

Hi @davi0937 Swooping in with some answers for you...while you're waiting for others to pop into the conversation. There are several members in the group who have mentioned Ojjaara (momelotinib) for various blood conditions.
@cindyem @ang3 @mikecaldwell have taken this for MF.

Actually, I just found a comment that Mike posted last year about his experience with momelotinib in a discussion you were following. I know it's easy to lose sight of some of the conversations here! Here's the link for you. 😉https://connect.mayoclinic.org/comment/1378392/

It's found in this relevant discussion:
Primary Myelofibrosis with JAK2: Anyone have Ojjaara (momelotinib)?
https://connect.mayoclinic.org/discussion/primary-myelofibrosis-with-jak2-mutation/
~I found some more discussions that you might want to look through as well. Here's the link to the search:
https://connect.mayoclinic.org/search/
It's not easy wrestling with decisions about which medication to take. I can totally empathize with your concerns in trying to find the best treatment options. The side effects for Ojjaara sound pretty typical for some of the JAK2 inhibitors. Though many people have no side effects or just minor.
What's your doctor suggesting?

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davi0937 | @davi0937 | 2 days ago

Thank you @loribmt

I had forgotten about my post! I’m seeing my Myelofibrosis MD in a few weeks. My anemia is mostly addressed via the clinical trial but my spleen has continued to grow. I briefly discussed next steps and it was suggested that momelotinib would be the next step. I’m 66 and would really like to move to BMT while I’m healthy in all other aspects. The Transplant MD outlined what would trigger transplant: further mutation, chromosome changes or current medications are not addressing symptoms. So I continue to wait. I was hoping to hear from current momelotinib patients on their experiences. Thank you for the links and reminder. Betsy

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cindyem | @cindyem | 1 day ago
In reply to @davi0937 "Thank you @loribmt I had forgotten about my post! I’m seeing my Myelofibrosis MD in a..." + (show)
Profile picture for davi0937 @davi0937

Thank you @loribmt

I had forgotten about my post! I’m seeing my Myelofibrosis MD in a few weeks. My anemia is mostly addressed via the clinical trial but my spleen has continued to grow. I briefly discussed next steps and it was suggested that momelotinib would be the next step. I’m 66 and would really like to move to BMT while I’m healthy in all other aspects. The Transplant MD outlined what would trigger transplant: further mutation, chromosome changes or current medications are not addressing symptoms. So I continue to wait. I was hoping to hear from current momelotinib patients on their experiences. Thank you for the links and reminder. Betsy

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@davi0937
I’ve been on Ojjarra for almost two years now. Originally I was on 200mg once a day but have been on just 100mg for over a year ago. I forget which lab test had changed to cause the decrease in dose.
Bottom line is great news for me. My hemoglobin, white and red count, and platelets have been in the normal range for quite a while now. I do have 1.5% immature neutrophils which is a concern to me. I believe my spleen has decreased in size for I don’t feel any discomfort anymore.
If I were not going monthly for blood draws, I would not know I have myelofibrosis. I use it as my excuse to go home early from dancing! I’m 78 yr young.
So keep the faith. Not all of the bad things some people are going through will happen to you.

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davi0937 | @davi0937 | 1 day ago
In reply to @cindyem "@davi0937 I’ve been on Ojjarra for almost two years now. Originally I was on 200mg once..." + (show)
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@davi0937
I’ve been on Ojjarra for almost two years now. Originally I was on 200mg once a day but have been on just 100mg for over a year ago. I forget which lab test had changed to cause the decrease in dose.
Bottom line is great news for me. My hemoglobin, white and red count, and platelets have been in the normal range for quite a while now. I do have 1.5% immature neutrophils which is a concern to me. I believe my spleen has decreased in size for I don’t feel any discomfort anymore.
If I were not going monthly for blood draws, I would not know I have myelofibrosis. I use it as my excuse to go home early from dancing! I’m 78 yr young.
So keep the faith. Not all of the bad things some people are going through will happen to you.

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@cindyem wow! What a great reply!! I will ask my MD if I can start at a lower dose. You are amazing!!

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