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Myelofibrosis, Ojjaara and anemia

Posted by ang3 @ang3, Mar 5 10:47am

Anybody in this group diagnosed with Myelofibrosis taking Ojjaara and still suffering from anemia? Low red blood cells, platelets are low, hemoglobin low, white blood cells high, spleen enlarged. Diagnosed with Myelofibrosis in August. Started taking 100 mg of Ojjaara daily back in September. Increased to 200 mg in December. No improvements. White blood cell count is increasing and other counts remain low.
Blood transfusions about every 2 weeks. I was under the impression this medication was supposed to help with anemia.

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hanya | @hanya | Mar 6 12:46pm

I am sorry that you are not doing well . I have myelofibtosis and still on JAKAFI 5 mgs
Twice daily. Taking multi vitamin with low iron ! Have low
Hemoglobin but not need transfusions yet ! Spoke with doctors about taking AJJARRA

REPLY
cindyem | @cindyem | Mar 7 8:04am

I, too, have Myelofibrossis. I started Ojarra 100mg 4 months ago due to spleen discomfort. That discomfort has improved. My platelets are still high, 700,000 and my white count is above the range but not significantly. Within my white count my neutrophils are high, showing a few immature cells. The lymphocytes are extremely low. The anemia has improved to low normal range.
I had my six month check at Mayo Clinic with Dr. Teffari. He decided there was no need to increase my dose of Ojjarra since the spleen has improved. He’s not as worried about my blood counts because I’m still quite healthy in most respects. After all, I’m going to be 77 yr old in a few weeks.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 18 9:01pm

@ang3, I hope you saw the helpful posts from @cindyem and @hanya. You may also be interested in this related discussion:
- Primary Myelofibrosis with JAK2: Anyone have Ojjaara (momelotinib)? https://connect.mayoclinic.org/discussion/primary-myelofibrosis-with-jak2-mutation/

REPLY
ang3 | @ang3 | Mar 19 10:45am

Thank you all for your replies. I am finding out that everybody is different and what works for one may not work for the other. I am hopeful that things will change and this drug will start working soon. If not, maybe we can try a different drug.

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hanya | @hanya | May 22 12:19pm

Hi Friend! I am on JAKAFI 5 mg twice daily ! Low hemoglobin
Fatigue! But overall painful skin burning is reduced ! I discussed with doc about new medication called AJJARRA which is supposed to help but not to reduce HGB !
I don’t know how other people are feeling with taking AJJARRA
GOOD LUCK ! Suggestion
Read good website and get educated about your illness!! Very important to know what questions to ask!

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hanya | @hanya | May 22 12:25pm
In reply to @cindyem "I, too, have Myelofibrossis. I started Ojarra 100mg 4 months ago due to spleen discomfort. That..." + (show)
@cindyem

I, too, have Myelofibrossis. I started Ojarra 100mg 4 months ago due to spleen discomfort. That discomfort has improved. My platelets are still high, 700,000 and my white count is above the range but not significantly. Within my white count my neutrophils are high, showing a few immature cells. The lymphocytes are extremely low. The anemia has improved to low normal range.
I had my six month check at Mayo Clinic with Dr. Teffari. He decided there was no need to increase my dose of Ojjarra since the spleen has improved. He’s not as worried about my blood counts because I’m still quite healthy in most respects. After all, I’m going to be 77 yr old in a few weeks.

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Happy Birthday Friend
I am going to be 73 in September of 2025
Had PV FOR ALMOST 20 years !! Now advanced to MF ! Praying for 7:5 years longer ! Want to see my grandsons grow up!
Best wishes to you all
May the GOOD LORD BLESS YOU ALL

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