Mis-diagnosis of PMR

[Pocketdog]

Good Morning, was diagnosed with PMR in March this year (eventually), started steroids and within 3 days thought I was Superwoman. Hadn't felt that good in a couple of years. Reduced from 20 mg of pred to 15 after 3 weeks. 2 weeks later had what I thought might be a flare but with your help and advice thought it more likely to be piriformis syndrome as upping pred back to 20 mg did absolutely nothing. GP agreed with this. Finally got to see a rheumatologist (privately - NHS couldn't give any idea of how long I would have to wait for an appointment). She didn't think it was PMR or piriformis as my inflamation markers were never raised. After an MRI scan on spine she has written to say I have bilateral insufficiency fractures within the sacrum which she suspects is due to significant osteoporosis. I have an appointment next week and she is arranging DEXA scan. I am back to researching like mad - looking to reduce the steroids sensibly, but am still very open minded as every symptom I had looked like PMR and Piriformis. Before I see the consultant I would be grateful for any thoughts you knowledgeable people may have on this and would you still adopt your slow slow taper method - even if I may not need steroids I don't want an adrenal crash.

[PMRpro Ambassador]

You can reduce quickly to 10mg without risking adrenal problems. It might be a bit uncomfortable as your body complains about the change in dose but not dangerous. Then you slow down a bit but after only 3 months it really shouldn't be much of a problem.

However - she is wrong about the inflammatory markers as they can be within normal range for up to 20% of patients and symptoms plus response to pred are equally as reliable as diagnostic criteria. And there is no reason why you shouldn't have both problems. It is extremely unlikely that the pred contributed to any osteoporosis that caused your fractures.

[Pocketdog in reply to PMRpro]

I'm keeping a very open mind on this. I am not discounting both - the symptoms were so indicative of PMR - apartfrom the blood markers - and then piriformis. I have lots of questions to ask next week. One of them will be why did tbe steroids work like magic after just 8 hours if it is osteoporosis and fractures and not PMR. I have today reduced the pred to 12.5 mg and will keep to this for 2 - 3 weeks. I'm not going to risk dropping faster until I feel it's definitely not PMR.

[PMRpro Ambassador in reply to Pocketdog]

Exactly - to my knowledge, while pred helps with OA to some extent, it doesn't take away the pain of even hairline fractures. I've never had markers outside normal range - maybe it isn't PMR despite the magic 6 hour miracle I had, but it definitely isn't fractures!

[piglette]

I should be a bit worried about a rheumie who says it is not PMR because you do not have raised inflammation markers. As a professional they should know that 20% of us never have raised markers. Because pred worked so well and did its magic at a low dosage does rather point to PMR. Possibly there may be other problems too of course, but I personally would not discount PMR. Out of interest why did you think you needed to see a rheumatologist? 75% of patients with PMR are dealt with in primary care with their GP only.

[Pocketdog in reply to piglette]

Hi Piglette - my GP referred me to a rheumatologist as he originally diagnosed PMR and actually physically examined me after no raised inflammatory markers and decided it was still PMR. I took the private option as I could and after a consultation with rheumy she thought it was nerve or spine damage and not PMR hence the mri scan. I can't argue the fact that the mri shows obvious fractures but I still need some explanation about the pred miracle, the dreadful fatigue and the pmr symptoms in the neck, shoulders and arms. I have a list of questions for the rheumy next week which is growing longer by the minute. Meanwhile research, research and a very open mind.

[piglette in reply to Pocketdog]

So your GP really wanted someone to check on their diagnosis which is fair enough. It seems quite a lot of people are in that position rather than being referred to a rheumatologist for something unusual.

[Loyd]

I definitely have PMR and have never had inflammation markers. I think you are wise to reduce pred slowly to check and see if you get a flair. Best of luck.

[Pocketdog in reply to Loyd]

Thanks Lloyd. Obviously I would be so happy to have PMR ruled out but there are too many factors that fit so whatever the rheumy says I have a huge list (growing bigger daily!) Of questions for her on 22nd.

[Nightingales]

Hello. I wondered if you had the MRI of the whole spine? If so make sure you get a copy and see if you have any other problems like stenosis, which might explain PMR symptoms. Best wishes.