Pains

I am down to 1mg since june 2018 or 17 can't quite remember. I am in so much pain in back, legs knees, elbows I know is tennis elbow. I walk as tho drunk, I can't get up from sofa or hard back chair, the muscles in my legs seem to have gone, bloody wish I knew where. My blood test states it is not pmr. So what is it. I have rheumy debt and neurology onto it but they seem to go all round the houses. Please help . Sue

[SnazzyD]

Hello, did this creep on or did it start suddenly? How have you felt generally on 1mg?

[Hidden in reply to SnazzyD]

I have felt this way for almost 18 months, so it was gradually really. I am so pleased to get down to 1 mg I want to be off them. They did a while ago put me back onto 5mg but it did not help. Before all this I was up ladders decorating but now it's like I can't be bothered and know I can't do it.

[SnazzyD in reply to Hidden]

As you’ve been told, having low inflammation markers doesn’t necessarily mean it’s not PMR. 5mg may not have been enough if a flare was allowed to build up. It could be a combination of, PMR, muscles weakness from deconditioning and Pred, or something else. Really, you are in pain and debilitated so some sort of effort needs to be made to find what else is going on if they think it really isn’t PMR. When you say they have gone around the houses, what do you mean?

[Hidden in reply to SnazzyD]

No one seems to listen properly and they put words in my mouth

[PMRpro Ambassador in reply to Hidden]

A not uncommon experiece!

[DorsetLady PMRGCAuk volunteer]

“My blood test states it is not pmr”…..not sure that’s strictly true…

a. the blood tests only show inflammation in body, not cause…b. between 7-20% of patients with PMR symptoms do not have raised inflammation markers,

c. 5mg was probably not enough to take away pain..usual starting doses range varies from 12.5mg to 25mg.

Think you Rheumy Dept needs to be doing more tests…..do you know what have they already considered and discounted?

[PMRpro Ambassador]

There is no blood test that can identify PMR definitively, things change - and some people don't develop the inflammatory response while on pred, even at a low dose. You can also have a ESR/CRP that is "within normal range" and it still be significantly elevated for you personally.

What you describe sounds very PMR-ish but what we call PMR isn't the disease itself - it is the name given to a set of symptoms that is due to an underlying disease process and there are quite a few that are polymyalgic in presentation. What you describe fits with the PMR criteria - what other things have your doctors looked for?

[Hidden in reply to PMRpro]

Syphilis bloody cheek. Brain scan. X rays on hips and knees. All show nothing unusual. I am getting to the point where I will not be taking anything they suggest. Feels like they are clutching at straws talking of straws it was the last one today where my husband had to help me out of the bath. So embarrassing. He is of bad health with heart failure, diabetes, arthritis his list is endless.....

[PMRpro Ambassador in reply to Hidden]

Time for a change of rheumy maybe. Because what you describe is very PMR-ish and fits with being taken off pred too soon. PMR lasts a long time - treated or not. I'd had it 5 years before it was diagnosed and pred offered - it hadn't gone away in that time for me. And while I appreciate you don't like pred - it gave me my life back and has done ever since. Plus untreated PMR has its own risks - including being more likely to progress to GCA which means high dose pred or risk going blind.

[winfong in reply to PMRpro]

Curious what your symptoms were pre-diagnosis. I feel I probably had it for years, but just fought through it. It wasn't until I started having constitutional symptoms (weight loss, fever, cough ...) that something was really done about it.

[PMRpro Ambassador in reply to winfong]

Muscle pain and stiffness - fitted textbook descriptions except for ESR and CRP being outside normal range, although they were probably raised for me. Couldn't lift my arms to shoulder level, never mind above it, hips were painful and stiff so walking was difficult.

[Pixix]

Don’t get carried away with this suggestion…but have they tested you (a series of prodding you over your body in certain pain points) for fibromyalgia? Do you have fatigue..you don’t mention it? Please don’t go overboard with Dr Google, but suggest you mention it to them to get it out of the way? S x

[Hidden in reply to Pixix]

I see rheumy on 7th March face to face. Wow. I will mention it to him . I do suffer fatigue not enough most time to go to sleep more like I have not got the energy to do it . S

[Pixix in reply to Hidden]

May be worth them ruling it out…& remembering, too, that you can have PMR & fibro…as I do! Good luck, S x

[Hidden in reply to Pixix]

Thanks

[Sandradsn]

I have been told the same by my gp."Its not pmr as all blood tests are normal and it only lasts 2 years if it was diagnosed correctly "!!I've been referred to rheumi ...can't wait!😀

[DorsetLady PMRGCAuk volunteer in reply to Sandradsn]

Let’s hope Rheumy is more enlightened.

[Sandradsn in reply to DorsetLady]

Hmmm🤔

[Hidden in reply to Sandradsn]

I do hope you get the reaction you want