Sceptical GP wants me off Pred and on Amitriptyline

Hello everyone. Recap – 69 years old male and up till 2 years ago very fit and active. I’ve posted a few times before but this time I really need some advice!

After 2 years on Pred, I reduced to 4.5mg, and have had, depressingly, to increase again to 7.5mg. Sadly splitting the dose didn't help, but Thanks PMR Pro. I’m feeling very low, in the middle of Glaucoma eye surgery and with a Massive Rotator Cuff tear in my shoulder since June. Even bigger changes in lifestyle seem imminent.

I had a 35 minutes consultation with my GP the other day (!). He’s latched onto my (ex) Rheumatologist’s diagnosis of “presumed PMR” and her comment of “normal inflammatory markers” - all while on Pred. The Rheumatologist I saw twice has now discharged me, telling me to continue as I was, reducing Pred slowly. She wasn’t particularly interested, did nothing but ask me about myself and seems to think PMR is for elderly ladies. No-one has ever suggested an alternative diagnosis for a previously fit and active 68/9-year old man. The G.P. was reluctant to refer me to the rheumatologist in the first place and has always been sceptical of me having PMR. So he’s asked me to think about coming off Pred , both of us knowing full well that he hasn’t an alternative diagnosis. I don’t remember the names of all the 3 alternative drugs he suggested but one was Amitriptyline which I have found out can be used to treat nerve pain. It has its own set of unwelcome side effects of course. I’m not happy with the G.P’s approach which is verging on “suck it and see”.

So I’m now confused and feel a bit cornered because he knows I’m very motivated to get off the Pred. as there is a chance that my raised eye pressure and shoulder tendon problems have been exacerbated by its use. So I want to find an interested Consultant in my area who really does understand PMR and who will give me a confident diagnosis (“yes” or “no” and if “no” “what” etc etc) and treatment plan.

So is there anyone in the West Midlands who feels able to recommend a Consultant Rheumatologist with a proven record of accurately diagnosing and treating PMR? I’ll travel anywhere within 50ish miles of Birmingham - Bristol certainly.

By the way, be aware that when the Pred leaflet gives Tendon Damage as a side effect, they mean due to fairly ordinary exercise!

9 Replies

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  • Mr Al Allaf. Based Wolverhampton NHS but I see him privately at BUPA Wolverhampton. He's an expert and brilliant and gave my GPS a kick up the proverbial. Take care

  • Brilliant! Just the news I needed this morning. Very many thanks.

  • If you need more info let me know. He also highlighted my osteoporosis check up which revealed I am seriously"frail" and pressurised my GP to arrange dexa scans which then revealed damage AA was doing. I have come to the conclusion we must act as our own GPs. There's an article written by a male journalist on his PMR and the problems he faced. Not sure which tabloid but I'll try and find it your GP should be made to read it.

  • "revealed damage AA was doing"

    Tell me more...

  • AA comes with side effects, for me it caused stress fractures but there is plenty on this forum about it. And it must work for most. The article you should read was by Roger Graef writing in the Daily Mail. It was so true and he likened his response to treatment being like a rebirth. You are on a journey, your are not alone, this is a wonderful forum and there is always light.

  • I meant how a dexascan revealed damage - I'm well aware of the damage AA can and does do. I took 4 tablets before sitting down with a very receptive GP. I never took any more - and have a perfectly acceptable bone density that has barely changed in heading for 8 years on pred. Calcium and vit D were all I needed. But I also never took a PPI - enteric coated pred at first and yoghurt subsequently did the job.

  • I don't have any advice but will share about amytriptline.

    I was first given it for sleep when I had fibromyslgia age 42 which ended 5 yrs later..

    Then I kept it due to how good I sleep with it. It is classed as an antidepressant but is used for much more..

    I'm super sensitive to drugs n have never had a side effect from them. I have stopped taking them at times but realized I wasn't sleeping as well.

    God Bless

    Linda

  • Hi..I totally agree about amitryptiline and have used it in exactly the same way as you Linda with no side effects..Chris

  • Thanks Linda. Appreciate your thoughts.

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