Atypical PMR

[Roy46]

Four years into GCA and aches and pains started last year. It's taken the best part of a year to see a Rheum. A couple of hip and hand X-Ray's and an MRI shoulder scan followed. Rheum's diagnosis, hip pains are due to fair wear and tear at my age (72, fobbed off?) and that in my shoulder I have left rotator cuff tendinitis, impingement and partial tendon tear. I have been referred to an orthopaedic shoulder specialist for advice on further treatment. I pressed, do I have PMR, or not. He didn't like that, so I'm none the wiser. My hip and shoulder pains are getting worse.

Been on 6.5mgs of pred for six weeks, so due to come down to 6mgs tomorrow. Don't think I'll chance it.

[DorsetLady PMRGCAuk volunteer]

Hi Roy,

Trouble is when you’re on high doses for GCA they mask any arthritis pain as well. Plus because you are not aware of pain, you are probably not aware that the joints are degenerating quite happily! At least that’s what I found out when I got back to lower doses of Pred.

Rheumy is quite right in his “wear and tear” comment, but that doesn’t really help the patient. I found that Pred did nothing for my arthritis, but then nothing much does to be honest?

Have you had ESR/ CRP tested recently- might be worth monitoring that for a few months to see if any increase. Meanwhile stick at present dose, unless things really escalate.

If your local hospital has a Musculoskeletal Team it might be worth getting a referral to them. There are usually a mixture of Orthopaedic drs and physios. You see the physios first, and if they can’t manage the condition they refer you to surgeon.

[Roy46 in reply to DorsetLady]

Coincidentally I've my next ESR/CRP blood test tomorrow and GP session next Wednesday. Watch this space

[Valnvaughan in reply to DorsetLady]

I am an example of Pred masking arthritis. Tho my highest dose was 15mg and my GP diagnosing a flare each time I got to 8mg put me back up to 15mg. 2 and half years down line I said " this pain is not bilateral. Please investigate" . Result of XRays in Jan 2018 severe degradation of left hip, collapse of right hip. 1st hip replaced in May, 2nd due next month. At present reduced to using a wheelchair for any distance. Be warned.

[DorsetLady PMRGCAuk volunteer in reply to Valnvaughan]

No sure if this was for me or Roy, but you’re preaching to the converted! I had OA in knee & shoulder pre GCA, both deteriorated significantly during the Pred years. Just had knee replacement - shoulder I shall struggle with as long as I can with injections.

My right hip has OA (according to surgeon). bursitis according to GP& Physio - but I’m beginning to wonder if there is also some damage from 4 years of Alendronic Acid. Also have lower back pain, have always assumed it’s either OA or reaction from dodgy knee, but anesthetist told me I had curvature of spine before knee op!

When I get appointment with GP will be asking for X-rays!

[Roy46 in reply to DorsetLady]

I stopped AA a couple of years ago after the warnings of side effects. I'm beginning to wonder whether I'll beat coming off of pred altogether, or it will beat me. Seems like a one horse race

[DorsetLady PMRGCAuk volunteer in reply to Roy46]

Not its not a one horse race, I've been off Pred for 2 years, and feel much better for it, despite what I said!

I already had OA before GCA (unfortunately hereditary)- not sure whether the Pred made it worse or if the AA did either. Too late to know, it is what it is. But this old nag is still pottering along, so we'll have to see!

[Roy46 in reply to DorsetLady]

I'm in the sea of despondency at present. Not alleviated by the fact that my ingrowing toenail is playing up again. Or that going to tomorrow's AGM will be a nightmare as much of the underground line that I will be closed.

Red wine calls, very strongly.

[Roy46 in reply to Valnvaughan]

Crickey. My mother had rheum arthritis and ended her days in a wheelchair after the bones in the top of her neck degenerated. She was only 50. Thanks to everyone for explaining the hidden mysteries of pred.

[PMRpro Ambassador]

Have you tried a couple of days of whatever dose you were at when the aches and pains started? What does your GP say?

[Roy46 in reply to PMRpro]

GP next week. I really don't want to regress a year, that would take me onto about 13mgs. And I thought that I was doing so well.

I hadn't realised that pred masked arthritis and my joints are degenerating (see DorsetLady above). My mother had rheumatoid arthritis and ended her days in a wheel chair. Not a comforting thought

[PMRpro Ambassador in reply to Roy46]

I said a couple of days - just to see if that cures the symptoms. As an indication as to whether it is the PMR. An important bit of evidence for the discussion with the GP.

"I thought that I was doing so well" - doing well with reducing pred isn't how low you get but how low you get WITHOUT PAIN. You aren't reducing relentlessly to zero, you are looking for the lowest dose that works as well as the starting dose. You should never feel worse after a reduction is complete than you did before it started - and obviously at some point that happened.

Your mother had RA in the days before biologics - it is very rare for RA patients to end up in wheelchairs these days providing treatment is started in a timely manner and is the right one. Drugs have come a long way in the last 20 years.

[Roy46 in reply to PMRpro]

As usual I'm working up a list of issues for GP. Your usual excellent "..." Will be included

[piglette]

A friend of mine who is an orthopaedic surgeon had never heard of PMR and even now since he knows I have it he calls it fibromyalgia.

[PMRpro Ambassador in reply to piglette]

For goodness sake - is there any hope??????

[piglette in reply to PMRpro]

The end of the world is nigh!

[Roy46]

Shock horror....or is it really a shock?