is it back again?

[Tayzee]

I’ve been off prednisolone for almost a year now and I’m really, really stiff in the mornings and I literally hobble out of bed. During the night I wake several times with throbbing pain deep in my leg muscles and also sometimes in my arms. I feel as if it sometimes spirals round my groin and legs so wondering if it’s sciatica 🤔 My neck is also very stiff but I wonder if that is due to the awful hump that I have developed… posture they say… (‘tech neck’ looking at phones etc) I’ve had an x-ray and dexa scan which were both satisfactory. My left arm doesn’t like the movement of putting arm in a sleeve but I can lift it up with not too much discomfort, so I’m wondering if that is rotator cuff or some other similar thing rather than the pmr as it’s only my left arm 🤔 I take Zapain 30/500 ( codeine/ paracetamol) which seems to help with all the pains and stiffness to a degree. So I don’t know if it’s pmr back or just old age .. but I’m only 66. I want to do stuff in the garden but my back also aches low down and then my legs start aching so I have to stop and sit with a heat pad. I’m feeling really fed up atm, I don’t want to go back on steroids coz of the moonface I got but I also can’t carry on like this … what are your thoughts? Any response will be greatly appreciated 😊

[SnazzyD]

From how you’ve described the pain and its pattern it sounds very PMR-like. You say you’ve been off Pred a year though your previous post 4 months ago sounds like you have recently stopped. Anyway, all things considered, tour climb down the ladder was not slow by most people’s standards and a flare up is a possibility. It’s the deep ache in the muscles, unsatisfactory response to pain killers, and timing that sound the warning bells. Your scan didn’t show disc issues in the neck that could cause arm pain.

If you get a good result from a full dose of Pred your query will probably be answered. If you need it, you need it unfortunately. Moon face can be helped to a certain extent by low salt and low carb diet.

[Tayzee in reply to SnazzyD]

Hi thanks for your reply, I think you are right and it is the pmr l just don’t want it to be 😢 gosh yes just saw my post and it is only 4 months… seemed so much longer … think I need to speak to gp 🤔

[PMRpro Ambassador in reply to Tayzee]

Then if it is only 4 months - that is a REALLY typical time for the inflammation due to a very low disease activity to have built up enough for you to feel. Pounce now and it is likely to only need a few days at 5mg to mop up the overflow and then you may be able to drop to 2mg, possibly even 1mg and not need any high doses at all. Leave it and you will inevitably need more pred.

[Tayzee in reply to PMRpro]

So should I just start myself on 5mg and test the waters do you think? I have all strengths in the drawer… I guess if the pain stopped that would be my answer… I pretty much did my own regime anyway when I was on them before…

[PMRpro Ambassador]

How long after stopping pred did it start up?

But really - come on, you do know what we are going to say don't you?

Moon face isn't entirely inevitable - low carb and low salt helps no end with pred weight gain and less weight gain means less chubby face, And it really does minimise wrinkles!

[Tayzee in reply to PMRpro]

Thank you for your response and yes you’re right 😊

[HalleysComet]

I think that has happened to me, too. I came off Pred about 3 months ago, having tapered down very slowly from about 2.5 years. My knees, wrists , back and hips have been suffering increasingly from what I thought was arthritis pain. It may be a build up of inflammation. How does anyone know?

After reading this, I have taken 5 mg Pred today and find my knee pain has nearly disappeared. If this continues, I shall take 5mg for a week and taper down slowly again.

I may have been too keen to get off Pred, as it gave me moon face. I think I prefer knee mobility to looking thinner.

[Tayzee in reply to HalleysComet]

I tried to get appointment with gp today….. waste of time! It’s almost impossible… just can’t get through..all lines busy and online constantly not available! Having read your post I might take 5mg and see how it goes 🤔

[sidra1968 in reply to HalleysComet]

Like I keep telling my friends, I'd rather have my terrible moonface than be recliner bound and in pain. At least now I can actually go out and do things.

[phoebesmum]

hi Tayzee. Yes, I have Codeine Phosphate in my prescribed medication, but I do try not to take them unless absolutely necessary. My advice is to speak to your GP and if the6 suspect arthritis, they may send you for X-rays to confirm. No two people react the same to medication. I take a daily dose of Tumeric with black pepper and this, for me at least, takes the edge off my pain. Codeine tends to make me very sleepy for at least 24 hours and blocks me up (if you get my drift) It’s not a medication I take willingly, but I would definitely recommend you speak to your GP in the first instance.

[Raewynne]

I can agree with not wanting to go on steroids again.Perservere to find something else.

[DorsetLady PMRGCAuk volunteer in reply to Raewynne]

Perservere to find something else.

such as? There isn’t a lot of choice, and Pred works.

[Tayzee in reply to DorsetLady]

Well I’ve taken 5mg yesterday and today and i honestly think I’m already less stiff and joint’s definitely feel better! Tho of course I’m thinking it’s all in my head and it can’t feel better already … wonder how I’ll feel tomorrow!! 😁

[PMRpro Ambassador in reply to Tayzee]

I felt better 6 hours after my first dose - so why shouldn't you already feel better?

[DorsetLady PMRGCAuk volunteer in reply to Tayzee]

..even better hopefully.. 😊

[PMRpro Ambassador in reply to Raewynne]

That is fine for other disorders - if it is PMR. the reality is that the alternative are simply not available unless you are very rich, You could waste a lot of time looking for a unicorn ...