What are treatments for myelofibrosis?

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.

@1pearl I’m glad you are finding good care now for this disease. Really helps getting a specialist. Every thing I read about Myelofibrosis says CALR is the least risky so you should be good. I’m going to ask my Provider about bone impact in May when I see her. I will let you know. Best wishes

@carolgk I wish you smooth BMT. I hope to do the same before I turn 70. I’m on a wait and see which is nerve wracking because I really don’t want another mutation beyond the SFSR2 with MPL. Please let us know how you are doing! Best wishes

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.

@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.

@carolgk Good morning? Thank you for mentioning Vonjo. I will ask my oncologist about it. I have both Myelofibrosis and Erdheim Chester Disease and am on Cotellic from Genentech. It saved me. I had lost 50 pounds - went from around 188 down to 138. After taking Cotellic, immediately got back to around 170 (perfect weight) and most symptoms disappeared. Hope this info helps you. Also … had horrendous thoracic itching years ago. Low dosage Xanax immediately stops it. I take .25 mg Alprazolam (generic Xanax) at night. Zero itching. Maybe try that!

@joaniech2004 I have Myelofibrosis. I had the horrible itching prior to being diagnosed with Myelofibrosis. Unbelievable how stupid every doctor (primary, dermatologist, gastroenterologist, allergist, rheumatologist, infectious disease, etc.) was, in that none even suspected a blood disease or sent me to see a hematologist. Primary laughed at my itching. What an idiot! But, a plastic surgeon friend gave me Xanax, and that annihilated the itching. .25 mg per night and zero itching. Perhaps the itching phase passed on its own at this point. I don’t know. I just know that itching is hell and Xanax stopped in.

@joaniech2004
It sounds like you and I had similarities in our journey to MF.
I'm sorry for what you went through in regards to physicians and itching. It's frustrating and upsetting to be dismissed.

I was given Xanax as well as many other potential medications for the Itching over the past 2+ years. None of the medications helped at all. It was very discouraging.

Since I started Vonjo, I have had some breaks in Itching days and the intensity is sometimes not as bad. I'm hoping that continues and gets better with every dose.

Thanks for sharing your story.
You are the first person I have heard of, having had a similar path to MF. Oddly, somehow knowing this helps.

Wish you all the best.