Agony - PMR Flare or Something Mechanical

[Burroughs123]

Hi all. Warning: a long message!!

Went on hols with family and had to come back early due to incredible pain from the bottom of my neck, across the top of my right shoulder, down and under my arm and into my forearm. I still have full mobility. I increased my pred from 10 to 15mg to see if it eased anything but it didn’t make much difference even after 4 days. Got home in the early hours after a very uncomfortable journey last night and so phoned GP surgery first thing. She seems to think it is mechanical rather than PMR as it is isolated in one side. She has prescribed 400mg ibruprofen with imeprosol (sp?) to protect my stomach whilst I am taking pred. She said to stick to 15mg pred but not go higher. I have to give it a week.

Prior to going away I had been feeling really well on 10mg. Dare I say “normal”. I had done a long swim about 2-3 weeks ago and my right arm felt achey a day or so after that and it got very, very slowly worse. So it may be that I have done something like trap a nerve or damaged a tendon swimming and ignored it and overworked it - or it could be that my PMR didn’t like me overdoing it and it is the polymyalgia playing up. Either way I am in complete and utter agony. No sleep for 4 nights. Some thoughts and your wisdom would be hugely appreciated.

On a plus note - I have finally persuaded my GPs to get me on the local Rheumy dept waiting list. I tried a private consultation a few weeks ago and it was a complete disaster. He was suggesting I try a quick taper from 10 to 5mg within a week to see if any GCA symptoms come along. If so I should “pop along to my local A&E”. Oh, and he would support me through it via email from 2.5 hours away. He attitude was so cavalier and blasé. He said I should be off pred within 18 months start to finish as polymyalgia only lasts that long. I was an unusual case, apparently, as I was only 50yrs old and my first flare was only in my shoulders. When I pointed out that via research I found that many sufferers seem to start with just their shoulders, he shrugged. I started to try and discuss the Bristol tapering regime or going down 0.5 and he looked at me as if I was mad. It was a bizarre and expensive visit.

Apologies - lots to vent.

[PMRpro Ambassador]

Sorry about your experience with a prize clown!!!! Unfortunately paying through the nose for a generic private rheumatologist doesn't guarantee they know any more. The idea of telling a patient to reduce to "see if GCA symptoms come along" strikes me as tanatamount to negligence - because getting someone to recognise it by "just popping into A&E" is pretty small. No names, no pack drill, but what region/hospital trust was this person practising in so others can bodyswerve the experience? He certainly needs some practise ...

I'd say you damaged something in that swim and what you need more than anything is an x-ray to rule out some things like impingement and a physical exam to identify if it could be rotator cuff or other soft tissue damage - not uncommon in PMR:

jrheum.org/content/46/12/1552

noting the glenohumeral joint involvement maybe?

teachmeanatomy.info/upper-l....

[Burroughs123 in reply to PMRpro]

Thank you so much for your quick reply - really appreciated. I am just going to have to see how it goes on ibuprofen for a week and if it improves then great - I will still have to taper off 15mg back down to 10mg which may prove interesting - and if not then I will push for an x-ray to see if there has been an impingement or something mechanical. Like you said, they seem to be common with PMR. In the meantime, I am going to have to find some sleep and a comfortable position!

[PMRpro Ambassador in reply to Burroughs123]

If you were only on 15mg for under a week there is no need to taper down - but be careful taking NSAIDs with pred. Each can cause stomach irritation and potentially bleeding, together the risk is higher.

[Burroughs123 in reply to PMRpro]

Yes - I was instructed to take omeprazole whilst on ibuprofen. I read a really useful thread on here very recently about this drug and everyone seemed to suggest a big dollop of yoghurt alongside the omeprazole and ibuprofen - and pred. Hopefully it should be just for a week. I might try and come down on the pred from tomorrow and get back to 10mg. Thanks again.

[Burroughs123 in reply to PMRpro]

Update: 2 days on with regular ibruprofen on board and I am sort of managing the agony during the day (the constant cocodamol could be helping as well?). By continually lying down propped up with pillows I seem to get some relief. But then 11pm hits, the pain increases to scream out loud agony and I writhe for about 4 hours before I finally drop off to sleep. I am at a loss as to why this pattern is emerging. In the meantime I dropped my “emergency” pred dose from 15mg down to 12.5mg and may try to stay there a week or two to get me through this current phrase. The pain is driving me mad. It’s horrific. And not sleeping - I have had about 3-4 hours of broken sleep for the past 2 nights and zero the night before that - is obviously taking its toll. Should I ask the GP for even stronger painkillers such as gabapentin (sp?)? Or a steroid injection into the shoulder?? I am beginning to give up hope here.

[PMRpro Ambassador in reply to Burroughs123]

You need to go to A&E and get an x-ray at the very least. Today, NO pain like that should be ignored, it isn't normal.

[Burroughs123 in reply to PMRpro]

Just spoken to GP - prescribed amyltryptine (sp?) starting at 10mg tonight and increasing up to 30mg only if absolutely necessary. She suggests to give this a try for a few nights before heading off to A&E or getting an x-ray.

[PMRpro Ambassador in reply to Burroughs123]

Lord - hope she doesn't do that with all her patients with pain!!!

[tangocharlie]

Sounds like it might possibly be a frozen shoulder and/or bursitis, both common companions of PMR. As PMRPro says you need some investigative tests like ultrasound.

[Burroughs123 in reply to tangocharlie]

The pain is from the top of my lumbar spine/neck (just under the lumpy bit) along into the top of my shoulder blade in a straight line and then it radiates down my arm into the top of my forearm and in an arc under my arm/armpit. The cocodamol is not working as well as it has been so I am praying that the ibruprofen works or it is another night of zero sleep. I had a frozen shoulder with my first ever flare which was based in my left bursar area. This area on the right is different. I will push for an ultrasound if there is no improvement in a few days.

[Burroughs123]

Just an update and to say a big thank you to everyone who replied to my post - I spoke to the muscular-skeleto specialist GP yesterday (who originally diagnosed my PMR back in March) and he confirmed that I have a C7 neurological issue/impingement. He could pinpoint it as I have tingling and numbness in my index finger, and the pain extends from top of cervical spine area, across my right shoulder, down and under my arm and on the top of my forearm. I asked if my original flare could have been this and not PMR but he said not. Bah! I began taking ibruprofen and Omeprazole (to stop any stomach issues whilst on steroids) last week and a few days later had to add amyltriptiline for night time relief/sleep. This is on top of cocodamol. There has been been some slow but definite improvement, as I can now take short walks and short drives. The pain has not got me immobile on the bed and I can now continue to work from home. Definite progress. I asked how long recovery would take - he reckoned about 12 weeks from start to finish so I have probably got about 5-6 weeks more. I am trying to wean off 1 ibuprofen dose per day and hopefully just 2 doses morning and night will see me through. They thought it would be better to come off NSAIDs rather than the cocodamol. He also suggested physio so I am going to get on with sorting that out, probably privately as the waiting list for our fabulous local NHS physio is months long.

I have been off Alendronic Acid since this episode started and the docs are happy with that until I get off the ibuprofen and Omeprazole. I'm still waiting for a DEXA scan - the request from the GP was put in over a month ago. My feeling is it should be ok given my age (50) and that I have been on steroids for 6-7 months.

In the meantime, I will try and taper down from 12.5mg prednisolone back to my comfortable 10mg in a week or so when I hope the pain will have eased a little further. I am considering doing it via 11mg for a fortnight. Any advice?

The moral of the story is "don't get all smug on a comfortable 10mg pred and think you can overdo it. Cos you'll pay!"

[PMRpro Ambassador in reply to Burroughs123]

Hope it improves with that approach - but given what it was like, anything must be better?

[Burroughs123 in reply to PMRpro]

True. I asked for scans and was told there was absolutely no need because he knew exactly what the issue was. When I said “but how do we know if the issue will resolve?” He said time will tell and the fact that there had already been improvement is a good sign.