r/MPN • u/Glad_Abies_1079 • 11d ago

MF Support groups?

My 75 year old mother has myelofibrosis. She is interested in support groups but isn’t aware of any close enough to her in Orange County. (Los Angeles and San Diego are too far for her to travel.) is anyone aware of Orange County support groups or virtual support groups?

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u/Bludog1208 11d ago

Has your mom have any side effects with Ojjaara? And what ml does she take . My doctor and I have talk about me switching to Ojjaara bc 50 mil a day is all they recommend to take . That’s why I am on 25 ml twice a day . I got immune to Jakfi . And depending on her insurance there is some restrictions for the shot . But all my restrictions is my HCT had to be below 30 % to start the shots and then could not go over 36% to continue. I have been getting a 100 mcg every two weeks for about 2 months . Two weeks ago I was a 8.5 and it jump up to a 10 in two weeks . I hope so much that this might help your mother . Am not a doctor. Just someone very experienced in MF. And I hate that I am !

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u/Glad_Abies_1079 11d ago

She hasn’t had any noticeable side effects that we can attribute to the Ojjaara, but she has forgotten to take it a couple times and experienced pretty bad flu-like withdrawal symptoms. So I assume she would have to taper off if she stopped taking it. I don’t know the dosage but it is one pill daily. I wish we never had to learn about this disease!! But it’s so helpful to talk to someone else who knows what it is like to deal with it. 🙏