Hurrah for PMR diagnosis, but look closely…

[Zebedee44]

Like so many of us here I had never heard of PMR when I was finally diagnosed with it after blood tests showed inflammation. I was thrilled when my doctor put up my first prescription, rushed to the pharmacy and couldn’t wait to pop a pill into my mouth. It was already seven months since the pain and stiffness had gradually reduced me to an invalid, terrified that my active outdoor life with my ponies and dogs would end and I would be in a wheelchair.

That was 2017, and I knew nothing about the condition I had been told I had. That was eight years ago yesterday and I am still tapering my prednisolone, today for the first time ever I took just 2.5mg. So much for the two years my doctor told me would see the condition burn out, just taper the dose. Whatever possessed him to prescribe 50mg of pred for three days, I have never known.

I can’t believe that every day on this forum somebody posts for the first time after a diagnosis of PMR having been told pretty much the same as I was back then. How and when will the research that is being done by a group of informed consultants all over the world filter through to rheumatologists and doctors so that this life changing condition is properly diagnosed and properly treated?

This forum and the charity behind it are leading the way to raise awareness but how can we, the patients, get the message across?

[SnazzyD]

When they become interested? PMR doesn’t seem to excite doctors on a big scale.

[Zebedee44 in reply to SnazzyD]

Well it’s not a very exciting condition for the patient either but correct diagnosis and treatment would be a good start.

[PMRpro Ambassador]

There is a new PMRGCA and steroid tapering information booklet to be issued by VersusArthritis in the near future - it is issued to rheumy departments and GPs to be given to patients. Obviously it can't be terribly detailed but it is about 16 pages of distilled wisdom and includes starting doses and suggested tapering approaches which it is also pointed out may need to be adjusted for the individual.

Three top rheumies, the charity and I all had input - we hope it doesn't get changed. But we worked hard on it because we wanted it to be correct and cover most bases. So if a doctor comes up with something truly weird in future - patients should be able to point to the booklet.

[Zebedee44 in reply to PMRpro]

That is really good news. Well done and thank you for all that you do PMRPro. 🙏

[PMRpro Ambassador in reply to Zebedee44]

I didn't do a lot other than a couple of fun discussions with one of the rheumies! And I read it - putting my views in and then at the end to say I could live with what it said!! There are bits I'd like to be different but it had to be a consensus and we got that. It is a lot better than it was!

[Nextoneplease in reply to PMRpro]

Great news PMRpro 👍Well done to all concerned x

[PMRpro Ambassador in reply to Nextoneplease]

Prof Vanessa Quick is a fantastic new Trustee for the charity!

[Nextoneplease in reply to PMRpro]

That’s good news 😊

[Rugger in reply to PMRpro]

Marvellous news! Your input will have been invaluable. 💐

[Dinahmite in reply to PMRpro]

That is good news. Do you know how we will know when the surgery has copies of this?

[PMRpro Ambassador in reply to Dinahmite]

No idea - hasn't even been fully signed off by VA or gone to the printers yet!

[proactive in reply to PMRpro]

That's wonderful. As it is not likely to make its way to Canada,I would love to purchase a copy of the pamphlet when it is ready or get access online somehow.

[PMRpro Ambassador in reply to proactive]

I don't know if VA put their leaflets on their website - I always feel such things should be on a website. I'd hope we could put it on the PMRGCAuk site.

[QiRelief505 in reply to PMRpro]

Fantastic news. Congratulations on your participation, smart of them to involve a knowledgeable person living with PMR.

[byebyebicycle in reply to PMRpro]

Well done 👍

[Rugger]

Happy anniversary 🤨 I'm 8 years and 8 months in - heading for 2.5mg in about 5 weeks - maybe! We're on this journey together. 🌹

[Zebedee44 in reply to Rugger]

I’m celebrating the anniversary with this possibly rather optimistic taper to 2.5mg, but not at all sure my body is ready for it. I would really like my adrenal system to join in with my return to normal activities. I seem to have become a dormouse, spending more daytime hours sleeping than awake, although sleeping at night is patchy!

[Rugger in reply to Zebedee44]

Well, I hope you're dreaming of ".....geraniums red and delphiniums blue...." (I know my A A Milne! 'The Dormouse and the Doctor' is one of the poems I recite when I can't sleep!) 🤣

[Charlie1boy]

I failed by just three months from getting into the 8 year club! Been on zero now for two years and three months, and going ok.; perhaps the PMR is in remission?

Good luck.

[Zebedee44 in reply to Charlie1boy]

I’m not thrilled to be in the eight year club Charlie1boy. I wasn’t thrilled when the doctor said two years. I certainly wasn’t planning this long haul journey. Well done for getting to the end.

[rosie_jones]

We're twins! Well, more or less. I "celebrated" my 8th anniversary five days before you. Like you, I was at the stage of being almost completely incapacitated by undiagnosed PMR, although the run up was just over 4 months, a bit shorter than your time. And it's just gone on and on and on... I got to 2.5mg this time last year, then flared, then broke my shoulder, then more flares and I've now just finished the reduction from 4.5 to 4 (again!). I do so hope your 2.5 and downwards progression goes more smoothly than mine did.

It's weird, I've almost come to terms with it now - yes, after all this time. I know it isn't going away quickly, if ever, and I think I'm just grateful to be alive, to be (fairly) well and supported by good people around me, including the health care team and PMRGCAuk and this forum. Best wishes for your future reductions.

[Zebedee44 in reply to rosie_jones]

Hello twin. And good luck with your taper too. I’m pretty fed up about STILL planning my life around PMR. Last year was very tough and it is only with determination that I have pushed through to 2.5mg. I came under the care of an endocrinologist a year ago when a pituitary adenoma was found ( during MRI for acid reflux related sore throat ). He arranged the Synacthen test and now I know my adrenal glands CAN work I am determined to make them. I’m fed up living this half life, sleeping my life away with a brain too foggy to read a book and a body at the edge of the pain threshold. I have made plenty of accommodations for PMR over these eight years and the prospect of tapering more and more slowly is daunting. But I’m not ready to accept that I might have to keep taking these pesky little pills for ever more.

[Zebedee44 in reply to rosie_jones]

Hello twin. And good luck with your taper too. I’m pretty fed up about STILL planning my life around PMR. Last year was very tough and it is only with determination that I have pushed through to 2.5mg. I came under the care of an endocrinologist a year ago when a pituitary adenoma was found ( during MRI for acid reflux related sore throat ). He arranged the Synacthen test and now I know my adrenal glands CAN work I am determined to make them. I’m fed up living this half life, sleeping my life away with a brain too foggy to read a book and a body at the edge of the pain threshold. I have made plenty of accommodations for PMR over these eight years and the prospect of tapering more and more slowly is daunting. But I’m not ready to accept that I might have to keep taking these pesky little pills for ever more.

[guineapigharriet]

2017 marked the beginning of my PMR journey. My most recent cautious & slowly does it tapering when hitting the 1mg level 4 months ago, resulted in a dreadful flare when I was barely able to drag myself along and feeling at the end of the road. My ESR had reached 44. As a result, I was instructed by the Rheumy to take 20mg Pred' for 2 weeks reducing to 15mg 2 weeks later, then 10mg followed by 5mg for a further 2 weeks, and finally dropping to 1mg & remaining there. I instinctiveky felt when dropping to 1mg there would be a problem, which resulted in my phoning the GP Surgery, when it was agreed to up again to 10mg and reduce to 5mg where I am reasonably stable. The Rheumatologist I have been under for some time keeps hammering it home I cannot remain on Pred' indefinitely & has me marked down with seronegative RA. I'm convinced it is still PMR with the recognised symptoms, particularly in the shoulder region. I have a further appointment with the Rheumatologist next month when he wants to discuss placing me on a DMARD, which I'm not keen to do, and would prefer to remain on a maintenance dose of 5mg Pred'. I will put this to him despite, I predict, his insistency to the contrary. We shall see.

[PMRpro Ambassador in reply to guineapigharriet]

I don't agree with him, I don't think he has managed your lower levels with the flares, you rarely need to return to such high doses. And I have been on pred for 16 years so no doubt he'd call that indefinitely!

However, MTX does do a great job for some and it IS worth trying, if only to get them to stop banging on about it!! But you got to 1mg once and you would probably get quite a bit lower than 5mg if left to your own devices. How is your GP about it all?

[Zebedee44 in reply to guineapigharriet]

Thank you for your input. I shall be wary of flaring as I lower the dose. I don’t have an ongoing relationship with a rheumatologist and would certainly query that flare management if I did. In the eight years of dealing with PMR I have had very little guidance from doctors, just followed my own very slow taper plan based on how I feel and whether my body is coping . I don’t see light at the end of the tunnel yet, it seems like a long and winding tunnel.

[guineapigharriet]

Cheers, and one wonders whether keeping up appointments with a Rheumy is necessarily helpful. The GP Surgery comprising many GPs keep records, though does not guide me. Just hope my prescription for Pred' can be maintained.