A new diagnosis has helped my PMR

[Achyjoints]

Thought I'd tell the group my current story with PMR in the hope it helps someone else.In December 2020 aged 57 I was diagnosed with PMR and over the next 2yrs managed to taper down to 6mgs but never lower.

After 2 years I started to get upper back pain which meant it was uncomfortable to lie down and impacted on my sleep.

This was always put down to my PMR and over the next two years I was firmly stuck on 7mgs.

I would attempt to reduce periodically but then my hips would start aching and I'd just stiffen up.

During that time all blood tests showed raised inflammation.

I felt that I was stuck in a cycle with no light at the end of the tunnel. I tried Osteopaths, acupuncturists, physios, masseurs, Kinesiologists, nothing helped. My GP even prescribed low doseage Amitriptyline, an anti depressant as they can relax your muscles, but that didn't help.

I decided to change my Rheumatologist as my previous one just wanted me to go on Methotrexate and I didn't feel she was exploring what the root cause of my back pain was, which isn't usually associated with PMR

My new Rheumatologist put me on a very high doseage of steroids short term to establish if it cleared my back pain but whilst it helped, it didn't stop it.

Numerous scans and X rays followed and finally in September 2024 I was diagnosed with Ankylosing Spondylitis in my upper back.

On 31st December 2024 I started to self inject fortnightly a biomed called Adalimumab and for the last 3 months I have reduced my Prednisolone by 1mg and am now down to 4mgs and my back pain is 80% better and my inflammation is right down.

I finally have a real hope of being steroid free by the end of the year, and am just so relieved we finally got a diagnosis for my back pain.

Hope there's someone out there this might help?

[DorsetLady PMRGCAuk volunteer]

Good to hear you are getting relief and a diagnosis for back pain, and are nearing the end of the Pred journey- but sorry you have AS.

All the best…

[Achyjoints in reply to DorsetLady]

Thanks for your response, I'm now conscious that I don't want to get too carried away and taper too quickly, in my desire to get off Prednisolone.I read today you responded to the 62yr old lady who tapered too quickly and is back to square one. Should I now be going down by 0.5mgs on a slow taper OR dead slow taper? Your thoughts, John

Ps Yes having the AS is a bitch but frankly I'm just glad it was diagnosed. John

[DorsetLady PMRGCAuk volunteer in reply to Achyjoints]

I’m one for making tapering as smooth/painless as possible, so to that end I’d go for 0.5mg a time and a slower tapering plan.

Good luck

[random901]

Thanks, Achyjoints, something else for me to explore.

[PMRpro Ambassador]

A not uncommon story - and with a story like you tell there, I'm surprised I didn't wonder aloud if that might be the case. Especially with your name Achyjoints ...

Do hope it all works much better.

[Achyjoints in reply to PMRpro]

Thanks for your response, I'm now conscious that I don't want to get too carried away and taper too quickly, in my desire to get off Prednisolone.I read today about the 62yr old lady who tapered too quickly and is back to square one. Should I now be going down by 0.5mgs on a slow taper OR dead slow taper? Your thoughts, John

[PMRpro Ambassador in reply to Achyjoints]

Whatever works. The Humira doesn't work instantly either - it may not be at full effect yet. But from 4mg you are concentrating on adrenal function returning so I;d say, the slower the better.