is this PMR

[CavalierKC3]

morning, I have now finished my 2 year Prednisolone taper for GCA. I was under Chetan Mukthyr. However much pain & stiffness I was in he always ruled out PMR as I did not have every single symptom, my tapering was never altered in the 2 years. Every day now I wake up to stiffness in fingers, buttocks, thighs.,lower back, neck. Feel very tired/fatigued, ( don’t sleep much) & get palpitations (presume that’s what horrible heartbeats are). Find it very unpleasant to get in & out of cars due to stiffness. Was told I have wear & tear in knees & hips( osteo arthritis) but mild painkillers & exercise should help. I have been to the gym & had guidance on what exercises to do, I walk our dog, housework, gardening but nothing seems to help with the stiffness etc. what are peoples views on this please

[DorsetLady PMRGCAuk volunteer]

Sounds very PMR like to me...although some could be down to adrenals stuttering as well.

As we have said many times in the past, we think you have been tapered too quickly.. but also know CM is not for turning.

Think you need some frank discussions with your GP explaining all you have here- and if you are no longer under CM [hope that's the case] get some sensible approach to your issues.

Does your surgery have the eConsult facility?- maybe easier to write it all down initially so GP can have read through before appointment.

[piglette in reply to DorsetLady]

My surgery have set up the e-consult so you can only use it when the surgery is open, perhaps the computer is joining in the ‘go slow’ in sympathy with the junior doctors. I tried it over a holiday weekend and was told to push off. I then tried it again when they were open and it still did not work.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Yes you told me yesterday - it had same over a weekend-but worked okay afterwards…

[piglette in reply to DorsetLady]

Sorry brain going. Yes it did work in the end!!

[DorsetLady PMRGCAuk volunteer in reply to piglette]

No probs 😊

[SnazzyD]

Sounds a bit all consuming to be explained as just osteoarthritis. Besides, things change and it can be difficult to see the wood for the trees if a problem morphs into something else. Besides, you can have both! Sounds like you need to be heard by someone who will listen objectively.

[piglette]

Have you talked to your GP about it?

[CavalierKC3 in reply to piglette]

No, have only seen GP once, 2 years ago when he thought I might have GCA & got me to hospital immediately

[piglette in reply to CavalierKC3]

As DorsetLady suggests I would contact your GP.

[SkinNBones]

The sleep loss makes me wonder about fibromylagia as an alternative diagnosis

[Rugger]

Your Consultant was one of the speakers at the 2019 AGM & Members' Day of the charity (PMRGCAuk). I was there! He gave a presentation about aspects of his GCA service - fast-track for ultrasound etc. He described the Norwich Regimen for a 100 week course of prednisolone. At that time, 100 patients had completed the 100 weeks and a subsequent 50 week observation period. Quote from the account of his presentation: "71 of the 100 patients have been off steroids and sustaining remission at 150 weeks." We were not told about the other 29 patients, but I assume they were in a similar position to you!

The account of the presentation is published in issue 29: Winter 2019 of NewsWire, the charity's newsletter.

Best wishes to you for your discussion with your GP as to the next step.

[Heron82]

I really sympathise with you. I keep getting told that my PMR is (and GCA was) atypicsl, as it mainly manifests in leg and hip stiffness. But PMR is a spectrum disease, so not atypical. However, my rheumatologist is very supportive with my slow reduction. Please press all the buttons to get a GP appt and go in ready for a discussion based on the support from the gurus on this forum. I wish you well.

[PMRCanada]

Have you had bloodwork to exam your CRP and ESR? In most patients they are elevated (but certainly not all patients). That can help with diagnosis. The pred addresses the inflammation but now that you’re off pred altogether bloodwork may reveal high levels of these markers. A positive response when taking pred is another piece of the PMR diagnosis puzzle, as is flaring/increased inflammation/symptoms when not taking enough pred or stopping the medication. Unfortunately there is no “one and done” test to diagnose PMR.

I cannot imagine following the same taper for the last 6 years…this condition ebbs, flow, and flares. Rigid tapering means not meeting the patient where they are at throughout their journey (which although similar to other PMR patients, certainly are different individually).

That all said it sure sounds like PMR! Not everyone with PMR have ALL the symptoms….I never had much fatigue (diagnosed at 55), until lately at a lower dose as adrenals kick back in.

Unchecked inflammation isn’t recommended, and quality of life accounts for something. Any chance you can have a heart-to-heart with you’re doctor, or get a second opinion from another physician? Sometimes we must advocate for our health. Hope you get a diagnosis and treatment (relief of symptoms) soon.

[PMRpro Ambassador]

Sounds like PMR to me - and his comments about PMR bear no resemblance to reality from the patient's point of view. But he thinks he knows it all I fear.