bone pain in PMF

[Itch]

I’ve had PMF for approx 12 years with no real symptoms. I am now experiencing extreme sweating & itching & intermittent shooting bone pains in legs. My bloods remain remarkably stable (tho platelets & WCC both high). My spleen is only slightly enlarged. Is this all an indication of disease progression or transformation? I will probably have repeat scan & BMB in New Year.

[hunter5582]

The definition of progression includes progression in symptoms even when there is no change in biomarkers. Transformation to blast phase/AML would be apparent in your blood work. A change in disease status is a valid reason to repeat a BMB to see if there is measurable change in your disease status. It sounds like you have a good plan in place to get that done.

Here are a couple of resources on bone pain.

pvreporter.com/bone-joint-p...

patientpower.info/myeloprol...

[Amethist]

now this may seem rather odd, but I used to get an occasional irritating itch just on one shin and one upper arm- maybe a couple of days a week. Always the same areas. Thought I’d give an anti parasitic a go and hey presto, the itching has stopped completely. Weird eh!

[Itch in reply to Amethist]

Thankyou, yes it is weird as to how different things work for different people. I’m trying a new antihistamine, so won’t confuse the picture. Very pleased that it worked for you.

[Scaredy_cat]

I had post et mf and didn't have itching until I had to stop ruxolitinib so I know that rux can be a good treatment. I had to stop because of falling platelets and then had fedratinib so there are drugs out there that can help

[Itch in reply to Scaredy_cat]

Thankyou so much for taking the time to reply. At the moment my Consultant doesn’t want to start me on Rux because I’m anaemia. He’s trying different antihistamines & see where we go. 🫶

[Itch in reply to Scaredy_cat]

Thankyou so much for taking the time to reply. I think for now my Consultant wants to avoid giving me Ruxolitinib as I’m already anaemia. He’s trying me on different antihistamines. 🙏🙏🙏

[Pennypen]

I have thrombocythemia when I got diagnosed over 23 years ago. I was taking hydroxy for this duration until a year and a half ago when I came off it as my platelets dropped to 350 but my white cell count was very high. My spleen became very enlarged and part of it now has necrosis. My specialist said I had an infection somewhere but didnt know where so he gave me a ten day course of anti biotic. They did nothing. Now I have a s15 marker on a blood test I did which means I have a malignancy somewhere which was picked up by my cardiologist. I am thinking of changing my hematologist. I am at a loss as I think I have been given the run around.