My daughter has PMR

[Vaggers]

You have helped me so much through my journey with pmr. I was diagnosed in october 2019 but it took 40 mgs of Pred to knock my symptoms on the head. My journey was stormy as I got sepsis on Christmas eve 2019 and recovered just in time for lockdown.

My rheumatologist discharged me by letter and I dont know why so i tapered down the Pred with your advice and eventually came off them in March. I felt pretty pleased with myself as so far I seem to be ok. Until……my daughter, who is only 44 has developed stiff neck, shoulders and hips, fatigue and weight loss. She has a raised CRP and ESR. Her GP thinks it is PMR.She has an extremely rare cancer, EHE (epithelioid haemangioendothelioma) which is monitored at the Royal Marsden every few months and she has been stable for many years. EHE is a cancer of the lining of the blood vessels.

Can you advise me what the doctor needs to eliminate before jumping to the conclusion its PMR? I had a PET scan to rule out vasculitis. She has so much to deal with, a single Mum with 3 children so i need her to have the best of care from her, not so helpful GP practice.

[PMRpro Ambassador]

A mixed post that - good for you, less good for your daughter. I was 51 when my PMR started - not helpful having it when you are still dealing with a family and, I assume, working!

If it were me, I think I would want to be seen asap by the team at the Marsden - PMR isn't the disease per se, it is the name given to a set of symptoms that are due to some underlying condition - and there are several, including a few forms of cancer. I'm not for a moment suggesting it is in her case - BUT she is a complex patient and it sounds as if her GP practice is less than a shining example! At the very least she needs referral to a rheumatologist - but the Marsden is probably a better place to start as she is already under them.

They are probably in a far better position to ensure speedy access to imaging that could confirm or exclude PMR as a cause of the symptoms. And I assume she trusts them?

[Vaggers in reply to PMRpro]

Thanks so much for your replyThe Royal Marsden are great and especially her consultant

Her GPs not so much.

I will tell her to email her consultant asap, otherwise her GP is at the point of starting her on pred without pursuing other possibilities

[PMRpro Ambassador in reply to Vaggers]

The trouble with some GPs is they don't know when it is time to open the gate ...

[Sharitone]

Congratulations on your recovery, and very best wishes to your daughter. I hope her consultant can come up with a definitive diagnosis.

[Vaggers in reply to Sharitone]

Thankyou sharitone. I would of course swap my recovery for my daughters good health.

[DorsetLady PMRGCAuk volunteer in reply to Vaggers]

If course you would..🌸

[Suet3942]

Poor girl. I live in dread that my daughter will get pmr. My mother had it as well

[winfong]

Is PMR hereditary? I had heard that it is not?

[LIVEORDIEHEREIAM in reply to winfong]

I have read here that a scattered few families are prone to PMR, but that it is a rare thing. So, the answer is maybe, in some cases. Like so many aspects of PMR, it is a bit foggy...

[PMRpro Ambassador in reply to winfong]

It isn't hereditary in the correct sense of that term, no. But one of the factors involved is a genetic predisposition, a set of genes that make it more likely that something will affect you - like the genes for red hair and fair skin make it much more likely that you will burn in the sun. In the case of PMR it appears to be Scandinavian genes amongst others. Since you share many of the genes from your parents and grandparents - it can appear to "run in the family".

[winfong in reply to PMRpro]

Thanks. Probably loads of epigenetic factors as well.

[bussell]

Just anecdotal, but my mother had PMR too. It is the only reason I had ever heard of it! I regret now that I was not more sympathetic at the time, though she did seem to get through it fairly easily and in a relatively short time.