What are treatments for myelofibrosis?

@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.

I was diagnosed with myelofibrosis in 2014.comfirmed with a Jak2 DNA deviation test .
Up until 2019 the disease was managed with mild chemotherapy and Venesections every couple of months.
2019 My amazing Dr introduced me to Jackavi.
I take it twice a day and my blood count has been perfect ever since. It is hard on my liver, so I now avoid alcohol, Panadol, and Nurofen. If I do this well , my liver count stays in the black. .
Jakavi has been a life changing drug for me. It is a very expensive drug. $11000 annualy. Luckily the Australian government cover's that for me.
I believe they will be able to create generic versions of Jakavi this year. That should bring the price down.

Best of luck! You're in my thoughts.

Henning

My brother is a genetic bone marrow match for me.. could you explain your experience with the transplant and what it was like for the doner.
It's something I will be looking at in the near future.
Kind regards Henning

I as 69 when I had my transplant. My MF had progressed to the riskiest stage and, because of my age, I was “running out of runway” in having to make a decision to go for the transplant or risk converting to AML. Also, with MF, my doctors told me my age could fast become a factor in getting approval for a transplant. Fortunately, I was in otherwise good health with no co-morbidities and, in very good physical condition. Unfortunately, my only living sibling was too old to even be considered as a donor. The local transplant coordinator searched the international donor registry and fairly quickly found several 12/12 matches. A donor from England was my best match, but our schedules could not be coordinated. The next best match was a 28 YO male from Germany and our schedules were compatible. So, I cannot really tell you much about the stem cell harvesting, except that the stem cells were taken from peripheral blood, not directly from the blood marrow. If I remember correctly, the donor had to take a series of shots before the harvesting day. I think the harvesting is like giving blood, but the blood is run into a separation machine to obtain the stem cells. That same day, a human courier hopped on a plane and brought the stem cells to my hospital and I received them the next morning, which is like getting a transfusion, and it was over in 10-15 minutes - sort of anticlimactic in a way.

I just recently contacted my transplant coordinator about making contact with my donor. I learned that I have to wait 2 years post-transplant with an international donor to make personal contact. I do want to thank him for helping extending/saving my life and to learn his motivation for donating and what that experience was like.

I hope this helps. If you have any other questions, please let me know.

Hello fellow Myelofibrosis patients. Has a physician discussed how Myelofibrosis affects bone health with you? Does it exacerbate arthritis? Thank you!

My doctor has not said anything to me about bone health exactly. The treatment I am under going should help stop the marrow turning completely fibrous. It won’t reveres it. Jakafi that I take should help with the arthritis relief but since they just recently had to reduce the dose I had been taking my arthritis pain seems to have come back some plus the swelling in my abdomen.

Good morning, @davi0937. While you’re waiting for replies from other Myelofibrosis members regarding their bone health, have you noticed a change in your arthritis?

Not sure if this is helpful but years ago a friend of mine experienced worsening joint pain with her MF. Her oncologist explained that MF can cause an increase in uric acid levels that may form needle-like crystals in joints, similar to gout, with symptoms of inflammation, swelling, stiffness and pain in the joints. Which is pretty difficult to differentiate from arthritis. So it might be helpful for your doctor to check your uric acid levels.

In the meantime, there are some foods that naturally help lower uric acid and help reduced inflammation from arthritis. (My dad had gout flare ups). Cherry Juice from tart cherries is great. If you can find the unsweetened Montgomery cherry juice, it often comes concentrated so you only mix about an ounce in a glass of water. Pineapple contains bromelain a natural enzyme that helps reduce uric acid, along with food containing Vitamin C.

Have you talked with your doctor about how MF might be impacting your bones? Do you feel the pain is getting worse? Is it primarily in the joints or do you feel just general bone pain?

Diagnosed with MF 3+/3 in January 2026. This after a frustrating 3 year journey of symptoms, missed by multiple (not Mayo) Specialists. In July 2025, I was Diagnosed with CMML-1 with low blasts. Local Oncologist referred me to Mayo in late December.
Mayo Oncologist picked up on the MF symptoms immediately. Ordered my third Bone Marrow Biopsy.
Cannot convey how thankful I am for the Oncologists at Mayo Clinic.

I am in process for BMT now, donors identified and testing underway. Hopefully to occur in about 2 months.
Im 63, otherwise healthy except Rheumatoid & Osteoarthritis. I had a Bone Density Scan in January, no problems.

Upon MF diagnosis, Mayo Oncologist put me on VONJO as I was having significant symptoms. In just two weeks, I felt like a new person, by 6 weeks (now) I feel better than I have in 3 years.
I consider VONJO nothing short of a miriacle drug.

I still have some Intense Itching and Bone Pain episodes but those symptoms are much easier to manage when you can breathe well, sleep well and my Spleen is not uncomfortable. After losing 50 pounds, I have gained back 5 pounds.

There are multiple medications to treat MF and symptoms. Your Oncologist will determine what you need, if anything. Wishing you the best possible outcome.

Hi @davi0937 ,
No, none of my doctors have told me how myelofibrosis affects bone health. I have two very enlarged joints that are not at all painful. I was told from DEX scan that I have osteopenia and should keep taking calcium and vitamin D daily which I have done for at least thirty years because my aunt and Mom had osteoporosis and my primary doc all those years ago recommended that I take those. I am awaiting results for new MRI with and without contrast for my enlarged right ring finger joint. I still have no symptoms for which I am grateful. I finally get to see a MPN specialist at UCSD soon as I changed my insurance in January 2026 after being very disappointed in my first choice for Medicare. My labs still show high platelets so I take low dose aspirin. My red cells and hematocrit are normal but white cells very slightly elevated, liver tests normal. I have CALR1 and TET2 mutations.