Advice needed please

[kate1978]

Hi all it's over 6 years since I was diagnosed with PMR, at first I was told to take Naproxen, when that didn't help, my GP Said to increase the naproxen

Eventually she asked if I had heard of PMR, no I had not heard if it

She then gave me 15mg of Pred and told me to come back in a week, it was like magic! The pain was in neck shoulders upper arms and hips, I could hardly turn over in bed and get up from a chair, she did blood tests and printed off a leaflet for me, she said I would be on steroids for maybe 2 years or for life

I managed to get down quite easily to 10 and then gradually to 4mg, couldn't seem to get lower than 4 without pain, the almost a year ago I had a flare, I had spent 3 weekend doing a lot of strenuous gardening. Digging up shrubs, going to the tip etc, I ended up going right back up to 15 mg someone on this forum said it was probably Doms

My doc sent me to a rheumatologist who was downright rude said I would have a heart attack or a stroke!

I've also recently lost half a stone, I was under weight to begin with!

GP ran some blood tests on all sorts of things ,been to see her today, my SRP is 4 and ESR is 2, she said she wants me to go down to 3 and a half for 4 weeks then 3 for 4 weeks then 2 for 4 weeks. Then to have a synacten test, she said it probably isn't PMR!

I have more or less the same symptoms as I had when first diagnosed, neck shoulders and upper arms not hips yet, but painful wrists, I'm seeing a different rheumatologist on November the 18th, thank you for reading, I'm so grateful for this forum, when I told her about it she don't take too much notice of what is said on here

[PMRpro Ambassador]

WHY isn't it PMR? I still have it after 15 years ...

[kate1978 in reply to PMRpro]

I told her that some people have had PMR for 10 years or more, she wasn't interested!

[DorsetLady PMRGCAuk volunteer]

Think you need to see a different GP as well as a different Rheumy!

Sounds very much like PMR to me - but then according to your GP - what do we know!

Good luck with new Rheumy - please keep us updated.

[kate1978 in reply to DorsetLady]

Yes I will, just puzzled by it all! I think. It's because she got the letter from the rheumatologist. Before that she seemed to be happy for me to get on with it all

[GlynisE]

My doctor put me on Naproxen all it did was give me chronic diahorea.

[Constance13]

This is not appropriate, but I had to laugh!

"she said I would be on steroids for maybe 2 years or for life". What a ridiculous thing to say!

Next (rheumatologist) - "you would have a heart attack or a stroke"???

It is difficult to put on weight (for some) - try eating little and 'often'.

If you have any questions or difficulties there is always someone on the forum (day or night) who will advise/commiserate.

Good luck and find new doctors if you can. 🍀🍀

[kate1978 in reply to Constance13]

Thank you I will

[PMRpro Ambassador in reply to Constance13]

In all the years on the forums I have come across a few PMR patients on pred who have had heart attacks - out of thousands in an age group that is likely to have one. I have come across more GCA patients who had TIAs or strokes before diagnosis and being put on pred. It is a very strange comment - even if there IS an increased risk of stroke when on pred.

[Margaret1951]

Think you need a different doctor and rheumatologist, but hey, what do we know, are they not right all the time !! They sure would act different if they had what we have !

[kate1978 in reply to Margaret1951]

Think we know more than them about this condition!

[Margaret1951 in reply to kate1978]

Of course we do, we are the ones who suffer !