Chronic Myelomonocytic Leukaemia (CMML)

[AyJayBass]

Recent posts regarding MGUS and Smouldering Myloma have prompted me to share my recent diagnosis.

I have had PMR for 3.5 years and following a few ups and downs of Pred dose, I have successfully tapered from 8Mg to 5mg over the past 12 months. I consulted a Rheumy privately (in Oxford) 12 months ago and he put me on an extremely slow tapering regime which is proving successful.

For some time now my Bloods results have been showing abnormalities in my white cell count, including monocytes. These didn't seem to be of concern and Googling did suggest a link to taking Pred as a posible cause of this. However, my eagle eyed GP had noticed that this had been going on for quite a while and referred me to Haematology. Extensive blood tests then revealed that I have CMML and that it seems to have started at around the same time as PMR - which may or may not be significant. I may need a bone marrow biopsy (ouch).

CMML is a specific type of leukaemia which affects the myeloid-cell-producing stem cells. The characteristic feature of CMML is the presence of large numbers of a type of white blood cell called a monocyte.

While it remains Chronic, there is no treatment, just "watchful waiting". If it transitions from Chronic to Acute then chemotherapy would be required. However, like MGUS, it is very possible that it will remain Chronic for years and at the age of 80 the likelyhood of dying from this Leukaemia is significantly less that dying with it. So I am not overly concerned about the future at the moment.

The primary symptoms are fatigue, brusing and abnormal bleeding, so quite an overlap with PMR. I have been struggling with fatigue for some time now and understand that it could get worse as I further reduce Pred and my adrenal glands start to function more.

[PMRpro Ambassador]

Hard luck - and long may it remain chronic!!!

A case report here

pubmed.ncbi.nlm.nih.gov/331...

of someone with the discovery the other way round - CMML first and PMR second.

Here's a patient with CMML who may have PMR

forum.bloodcancer.org.uk/t/...

Maybe that forum would be helpful to you and you could invite him over here!!

[AyJayBass in reply to PMRpro]

Thanks PMRpro. I have joined that forum and invited that patient here.

[DorsetLady PMRGCAuk volunteer]

Thanks for update, and sorry to hear diagnosis.. but your approach is the way to go. Best wishes. 🌸

[CygnusX1]

The bone marrow biopsy was more unpleasant in my head than the actual procedure. All the action takes place behind you! 😊 I held hands with a lovely nurse the whole time - she kept telling me how well I was doing. Aren't our nurses and NHS wonderful? I'd prefer not to have another one but if needed I wouldn't hesitate.

[AyJayBass in reply to CygnusX1]

Thanks for the reassurance!

[Grammy80]

So sorry you have something else on your plate, but love your attitude. My best...💞