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What are treatments for myelofibrosis?
Blood Cancers & Disorders | Last Active: 7 hours ago | Replies (132)Comment receiving replies
My husband has just been diagnosed with Secondary Myelofibrosis. Previously he had Polycaethaemia Vera for 4 years. His haemotologist has prescribed Ruxolitinib 10 mg and he has to have 2 weekly blood tests to see how the drug is working or if the size of the dose may need changing. Has any other sufferer been prescribed this drug and how are you coping with it and its side effects?
Replies to "My husband has just been diagnosed with Secondary Myelofibrosis. Previously he had Polycaethaemia Vera for 4..."
@nisi
I have been taking Jakafi (Ruxolitinib 10 mg. 2x per day) for about 6 months for Secondary Myelofibrosis. I am still fatigued, but the medication helps alleviate the very itchy skin experienced, especially after showers.
@nisi I just posted this to someone asking about Jakafi and ET: “ I was placed on anagrelide for about 10 years until it was becoming no longer effective in keeping my platelets down and within the normal range. I was then prescribed Jakafi and it was very effective in managing my platelet level for about 10 years until my ET converted to Myelofibrosis. I was on 10 mg of Jakafi twice a day and never experienced any negative side effects.”
I was not on Jakafi much longer after My MF diagnosis, as my hemoglobin level was dropping below 7.0 and I became dependent on blood transfusions to keep it above a 7.0 threshold. For a while I was prescribed momelotinib which did help with the anemia, but I ultimately had a successful allogenic stem cell transplant in October 2024.
Good luck to your husband as he navigates his MF treatment.
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Hi @nisi Welcome to Mayo Connect. I’m so sorry to see that there’s been a change in your husband’s health. I know how concerning that can be so I’m very glad that you’ve joined in the conversation. I think you’ll find a lot of helpful members here.
It can be frightening starting a new medication so it can be helpful to see what others are experiencing. There are quite a few who have polycythemia vera (PV) and/or myelofibrosis (MF) who also take the medication Ruxolitinib, (Jakafi). It’s one of the frontline medications for this condition. In fact, another new member @jgjacksonmn1 shared a similar story with his wife having PV which is transitioning to MF and is now taking Jakafi. You might want to read their discussion. Here is the link:
This is new and overwhelming. Wife is diagnosed and we need support.
https://connect.mayoclinic.org/discussion/this-is-new-and-overwhelming-wife-is-diagnosed-and-we-need-support/
Has your husband started taking his medication yet?