Possibility it’s not PMR

[SunshineJSM]

Hi,

I was diagnosed with PMR a few years ago and have been on Pred since then.

I’ve been tapering off of Pred with a few flare ups but managed to get down to 2mg.

My doctor advised that if I have another flare I should not increase the dose but come in to have some blood tests to check my inflammatory markers.

The blood tests have indicated that my inflammatory markers are normal and so now my GP thinks I need to see a different doctors who has a interest in rheumatology.

My original doctor now thinks that on balance it may not be PMR and so I should keep reducing my Pred dose to get off it asap.

I have an appointment with the new doctor in a few weeks and in the mean time have dropped dose again but I am struggling with symptoms- pains and fatigue.

I feel a bit frustrated and just wondered if anyone else had experienced something similar and if so what else presents with the same symptoms as PMR.

Thanks in advance

[DorsetLady PMRGCAuk volunteer]

Looks from previous posts as if you’ve only had PMR for a couple of years - is that correct? You don’t actually say when diagnosed

If so, then it sounds very typical -maybe reducing too quickly in the past hence flares -and now, at 2mg, at the lowest level your illness actually requires.

Your GP is probably of the school that PMR only lasts 2years it might for some but for many it’s last a lot longer. And if he thought it was PMR originally - why had he changed his mind? Apart from timescale. Also doesn’t appreciate that blood markers can lag behind symptoms

Hopefully the new doctor (GP or Rheumy?) will have a more realistic view of PMR - particularly the time it lasts.

..and I’d be inclined not to taper any more.

[SunshineJSM in reply to DorsetLady]

thank you.

It’s been just over two years.

There is a GP at our practice with a special interest in Rheumatology so my next appointment is with them - fingers crossed.

[DorsetLady PMRGCAuk volunteer in reply to SunshineJSM]

As I said, hopefully he will have a more realistic and educated view - good luck...

[123-go]

Hi. Your past posts have frequently mentioned flares and struggling with tapering and I would put this down to mismanagement of your PMR on the part of your several GPs together with (forgive me if I’m wrong) not taking enough rest: you really have to make whatever adjustments possible to your daily life in order to give yourself the best chance of a smoother journey to eventual remission. PMR won’t be hurried. I believe it’s time to see a rheumatologist as you continue to struggle with tapering your prednisolone….easier said than done these days but I believe you need specialist advice and I would push for this with the next GP you see. I wish you luck.

[SunshineJSM]

thank you

[PMRpro Ambassador]

I would say that - on balance - that GP is being a bit hasty with his expectations! And you probably need to slow down the taper even more - the adrenal glands lack of enthusiasm can cause similar problems and you can't just "taper off pred" at will. I do hope the GP with a special interest is better than them - and you do have to ask why you haven't been handed over to them before!

[JulieR2]

Hello

Sorry to hear you are having problems. I have had a seven year battle too. Ultimately I have seen 3 rheumatologist and have a working diagnosis of reactive arthritis or maybe psoriatic arthritis. My rheumatologist has told me that it isn’t uncommon for someone to have PMR and then for it to morph into one of the other many rheumatological conditions.

Basically I am now on Methotrexate and Sulphasalazine. I am reasonably well and the signs of oesteo arthritis have also come into force with vengeance.

My rheumatologist view is that as the treatment is basically the same getting hung up on the label may not be the biggest issue.

The next step for me is to stabilise and then reduce the dose of the drugs I take so I am on the lowest dose possible.

I have hypothyroidism and am on the edge of pernicious anaemia so I am obviously predisposed to autoimmune problems.

On a brighter note I am able to do most things although I am a little stiff😄 I have normal wear and tear in knees, shoulder and fingers which I guess in 7 years was bound to get worse.

So maybe I am one of the unlucky ones who just transistioned into a new set of problems! My inflammatory markers have been normal for two years and were only ever marginally raised.

Good luck

[SunshineJSM in reply to JulieR2]

thank you.

I will see how my next appointment goes.

Good luck

[MiloCollie]

sounds a bit like reading my own story. My rheumy still isn’t sure it’s PMR. he keeps saying I’m too young. I’m nearly 54. He’s been treating me for 2 years. I’ve just got back to 5 mg and I think I’m struggling. I say I think because I ran out of methotrexate last week so not sure it’s that. I’ve been a bit all over the place these last few months as my hubby left me but I’m getting back on track. Good luck with your appointment. X

[PMRpro Ambassador in reply to MiloCollie]

NOT too young!!! People get it in their 40s - it is LESS LIKELY maybe but that isn't the same thing ...

[MiloCollie in reply to PMRpro]

oh I know. He’s painful. He threw other things in that I ignored and told me I couldn’t possibly have been on 4.5 mg as they don’t make a 0.5 mg tablet!! I didn’t think quick enough to say it was two 1mgs and a 2.5mg so I said I’d made it in my laboratory. I’d had enough of him 😂😂 he never came back in the room. He sent the nurse in to say goodbye

[DorsetLady PMRGCAuk volunteer in reply to MiloCollie]

What a prune! Him obviously 😲

[PMRpro Ambassador in reply to MiloCollie]

More evidence that making kids do maths to 18 is a vain hope!