First rheumatology appointment

[Pegasu]

Hi all

I have my first rheumatology appointment next week and wondered if anyone has any advice. I was diagnosed with PMR in January and had pain in one shoulder which left me unable to lift a kettle. Then a couple of weeks later I had crippling pain in my buttocks and down both legs back and front, which I still have. The shoulder pain went with the first dose of steroids but it didn't touch the other pains. My GP thinks I do have PMR but also something else that is pinching my nerves. I had an MRI which showed some degeneration (not much) in my spine, but I am almost 72, so I would expect that. The pain was so intense that I couldn't go to work, shopping or anything, I was housebound for 9 months. The GP gave me amitryptiline and it has really helped. I am now able to go out. The pains are still there but the meds have dulled the sharpness of them so I can do housework again. The GP is reducing my pred slowly and I am now down to 9mg. I have been on lansoprazole and alendronic acid from the start of the steroids. The pred caused my blood pressure to go up so I have to take blood pressure meds too now and that makes my legs and feet swell. What a state, and I'm a dancer too, at least with the amitryptiline I am able to dance again, and I willl be able to go back to work soon if this keeps up. I would be so glad to get off all these pills but will the rheumatologist put me on something else. That's what worries me.

Any comments welcome. Thank you.

[PMRpro Ambassador]

Have you looked up piriformis syndrome? How does that parallel your buttock symptoms?

To have got to 9mg since January is not bad at all, particularly with all the other stuff you had going on. Impossible to say if the rheumy will want to introduce something else - I wouldn't want to add in anything else since none of them available to you in the UK are guaranteed to get you off pred or even reduce the dose and inevitably they add another layer of side effects - the more there are, the more interactions are possible even if they aren't listed.

[Pegasu in reply to PMRpro]

Hi, yes I did and I had a course of deep tissue massage from a private physio but it didn't give any long term relief, just made it feel better for a couple of hours. Thanks for your help. I really don't want any more tablets or anything else on top of everything I'm taking. I think I would sooner stay on the amitryptiline as that seems to be working.

[PMRpro Ambassador in reply to Pegasu]

Massage won't achieve longterm relief - but the relatively simple - and free - stretches should make quite a bit of difference when done regularly.

[Bluey-1 in reply to PMRpro]

I’m keeping up with the daily stretches as they feel good

[Bluey-1]

Oh Pegasu, I feel for you. I too am struggling with steroid side effects, mostly insomnia. I am a different person on the very rare nights I get a fair few hours uninterrupted sleep. Currently struggling too after an active life and am doing very little. Adding layers of other drugs isn’t appealing but I’m up for that to some extent. My GP has recommended an online course, Sleepstation, which I’ve started but I’m not convinced after completing 5 days sleep diary and some communication from the sleep coaches…or whatever they call themselves. I’m brain dead today and can’t remember!

[Pegasu in reply to Bluey-1]

I feel for you too. There is nothing worse, apart from pain, than not being able to sleep. I am very lucky that I have usually managed to sleep well. I have no pain when I am sitting or lying down. It's only on standing up and moving that my pain kicks in. I couldn't even stand to peel a potato a couple of months ago but I am convinced it's these painkillers that have helped to take the edge off it. My heartfelt sympathies to anyone in dreadful pain, it takes so much away from your life. ❤️

[piglette]

Do you know why your GP suggested you go to see a rheumatologist fir PMR? Do they feel they do not have enough knowledge themselves or do you have other strange symptoms do you think? Have you had a Dexascan to check your bone density, you should? Have you got osteoporosis, if not I would question taking Alendronic Acid. Have you been prescribed vitamin D with calcium, you should be?

[Pegasu]

GP is not certain of the correct diagnosis as nothing shows up in bloods, but then it doesn't always. I've had an xray and MRI, that's all and it was difficult enough to get them. She gave me AA and lansoprazole as a precaution while I'm on pred. I take vit D with calcium anyway, she didn't prescribe it.

[DorsetLady PMRGCAuk volunteer in reply to Pegasu]

Bloods are not the most important thing -your symptoms -or lack of them -are when you are tapering. The blood results just act as confirmation that all is okay -or not!

The tapering regime in the guidelines is open for anyone to read, so GP has no excuse say she doesn’t know what dose you should be on…. You follow the guidelines but adapt if necessary - not rocket science.

PMR guidelines - tapering 

This is tapering regime from guidelines -

The suggested regimen is:.

Daily prednisolone 15 mg for 3 weeks.

Then 12.5mg for 3 weeks.

Then 10mg for 4–6 weeks.

Then reduction by 1 mg every 4–8 weeks or alternate day reductions.

**However, there is no consistent evidence for an ideal steroid regimen suitable for all patients.

Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course.

Some benefit from a more gradual steroid taper.

Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.

*note the comments - these are just guidelines, not everybody is able to conform.

[Predsharer]

I am a bit concerned that your GP has diagnosed PMR even though your original symptoms aren’t totally classic PMR symptoms. I know that inflammation markers in the blood are not always present in cases of PMR, but normally one would expect to have shoulder pain and stiffness in both shoulders with PMR. If he was unsure at all he should have asked for a second opinion, not prescribe the whole raft of medication, much of it as a precaution, without having a DEXA scan. One shouldn’t be taking Alendronic Acid without knowledge of whether or not they have osteoporosis. I think you need that appointment with a really good rheumatologist, some more tests and maybe a review of your medication in line with what is found. Also you should be able to get Vitamain D and Calcium from the NHS. Vitamin D is probably one of the most important things you take for PMR, alongside prednisolone. We are so at the mercy of the medics we see, many of whom know nothing about PMR unfortunately.

[PMRpro Ambassador in reply to Predsharer]

"normally one would expect to have shoulder pain and stiffness in both shoulders with PMR."

Not necessarily at all, the criteria are pain and stiffness in either/or or both hip and shoulder girdle. The pains pegasu described are typical of myofascial pain syndrome which is very commonly found alongside PMR but is harder to get under control with oral pred. And pegasu is asking because she is about to see a rheumatologist - and as you know, not easy to dictate who you see in the UK!

[Predsharer in reply to PMRpro]

isn’t it strange what we are all told ? I was told by the rheumatologist who diagnosed my PMR, that if it wasn’t bilateral it wasn’t PMR. If there were no high inflammation markers it wasn’t PMR and if it didn’t respond to 15mg of Prednisolone in a week, it wasn’t PMR. He rang me in a week and I said my pain had gone, my inflammation markers were very high and it was bilateral, so he said “there you are then it’s PMR, as I said”.

What chance have we got if the the only medics available to us diagnose in this way. My GP looks to him for advice too, so the word is spread far and wide.

[PMRpro Ambassador in reply to Predsharer]

His first criterion is debateable. The other two are rubbish - up to 1 in 5 patients don't have markers that are outwith the "normal range" though they may be raised for them. Same applies for GCA - Snazzy in the forum had resolutely normal markers even as she sat in the ED with her vision shutting down and there are patients with biopsy-proven GCA whose markers were "fine", more difficult with PMR as there is no 100% certain diagnosis, except maybe PET-CT. But while 15mg may work in a week for some, it doesn't for everyone and there are several reasons why, The response to 15mg pred is no longer considered an appropriate diagnostic tool - when it works, good, when it doesn't, does rule out PMR. Just like a negative biopsy doesn't rule out GCA - and we hear of patients being told that again and again.

[Pegasu in reply to PMRpro]

I'm sure my mum had GCA although they told her it was PMR at the time. Many years ago now. she had painful lumps in her scalp and they told her she could lose her sight if she didn't take the steroids. The steroids messed up her stomach for life so I was pleased to take the lansoprazole alongside as I don't want a life like hers turned out to be.

[Pegasu in reply to PMRpro]

Thank you PMRpro. I think you are right, and who knows if the rheumy I am going to see is a good one.