MDS risk factors include PMR/Vasculitis

[kp60]

Hello,

My son is at risk for MDS/AML so I've been researching these conditions and have discovered in several references that there is a higher risk for developing MDS if one has had an autoimmune condition, and PMR is mentioned specifically.

ncbi.nlm.nih.gov/pmc/articl...

I know that PMR is in general a risk factor for certain tyhpes of cancer, but I guess I'll add this one to the list.

Any experience with these kind of progressions with PMR?

Thanks! Kathy

[DorsetLady PMRGCAuk volunteer]

Sorry to hear about your son -and don’t have any advice to offer.. but I haven’t seen it mentioned on here before.

[PMRpro Ambassador]

"I know that PMR is in general a risk factor for certain tyhpes of cancer,"

This

ncbi.nlm.nih.gov/pmc/articl...

doesn't think so.

There is a UK paper saying there was an increased incidence of diagnosis of cancers within the first 6 months of a PMR diagnosis but that has been considered likely to be due to PMR being the first symptom of an underlying malignancy or to the increased medical supervision and investigation of such patients.

pubmed.ncbi.nlm.nih.gov/238...

It is emphasised in several papers I have seen that it is crucial to rule out underlying cancer in patients presenting with PMR-type symptom. There is no definitive test that can confirm PMR as we discuss it and PMR isn't the disease, it is the name given to a particular set of symptoms and they can have a variety of underlying causes - including cancers. I know from experience that a LOT of GPs don't go to the effort of the ruling things out ...

[kp60 in reply to PMRpro]

THanks PMRpro. I like your study better... 👍 Other than the regular blood tests I'm very curious how docs rule out cancer before diagnosing PMR. Are there specific blood tests?

[PMRpro Ambassador in reply to kp60]

They do various blood tests - or should at least - and if any look dodgy follow up from there. Chest x-ray should be standard - a lot seem to have an aversion to that! The response to pred may not be typical - variations there are important, not least because it may be another inflammatory condition.

[Suffererc in reply to PMRpro]

My GP on the ball with tests for cancer. Her main problem is ‘Get of steroids’. Can’t have everything I suppose 😊

[PMRpro Ambassador in reply to Suffererc]

Ask her if she tells her RA patients to "get off DMARDs". Pred is our DMARD. Or her diabetes patients to get off insulin ...

[Sophiestree in reply to kp60]

pre diagnosis when my bloods were all over the place they thought I had cancer which is why I was sent for a PET CT after too many CTs, Ultrasounds and MRI's to count. That gave me the diagnosis of LVV

[kp60 in reply to Sophiestree]

may I ask what part of your body did they do the pet ct?

[Sophiestree in reply to kp60]

A PET CT is a full body scan

[keeptalking]

I was diagnosed with CLL (Chronic lymphocytic leukaemia) 9 months after my PMR diagnosis. 5 years ago. There were small signs showing in my blood 18 months before the PMR took hold.

I know mine is affecting my B cells and not T cells but both cancers are in the bone marrow.

I can honestly say that the PMR has affected my life more than the blood cancer

Hope you and your son get a conclusive result soon

[kp60 in reply to keeptalking]

thank you.