It’s back 😩

[Jlml]

Good evening,

I had PMR 3 years ago and managed to wean myself off prednisone in August.

I have been feeling unwell and achey recently, went to the drs and had blood test.

My ESR level was 40 ( it should be between 0-20) and the Dr thinks PMR is back.

I really don’t want to go back on steroids as it took me so long and hard work to get off of them and to be honest they didn’t give me much relief during the time I was on them although my ESR levels went down to 2.

Is there any alternatives such as mexotrate or if I do nothing will it sort itself out.

Clutching at straws a bit but I really don’t want to start again.

Any advice would be greatly received?

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this-but you may find that as you’ve only been off Pred a few months, you won’t need to go as high as 15mg.

I would say although you weaned off Pred, your PMR was still bubbling along with a very small amount of steroids enough to keep inflammation under control.

You may find that a smallish dose of, say 5mg. may be enough..so don’t discount it completely.

Final point, for some people PMR lasts longer than 3years -and towards the end a very small dose is enough to control things ..and I would hazard a guess that you tried to reduce too quickly which is why you didn’t get the relief expected.

… and doing nothing is probably not an option.

[Jlml in reply to DorsetLady]

Thank you for replying.

I did wonder whether a small dose may be enough, I will definitely pursue this with the Dr . She is waiting for advise from the hospital as what to do with me so at present I am waiting.

[SnazzyD]

That’s rotten! When you say you feel achey, do you mean the same PMR pain you had before? What sort of unwell?

[Jlml in reply to SnazzyD]

Hi Snazzy,

Thank you for your reply.

Yes it does feel the same , although it is more in my hips, lower back and neck and funnily enough in the bottom of my feet?

I am exhausted after doing the smallest bit of housework or walking the dog. Everything is an effort.

[HeronNS in reply to Jlml]

Fatigue can be due to sluggish adrenals. Being off pred doesn't mean everything clicked back into place. In answer to another question you asked I'd say if 2 is enough to do the trick you should stay on it a long time. PMR activity can hang about for a very long time, as I have found to my cost. (Been on pred since 2015 with a brief flirtation with zero in 2020. 2 mg appears to be my lowest best dose and even the occasional 1.5 seems to be a bit risky, at least at the moment.) If you still have niggles or seem to be feeling a bit worse it would be a good idea to increase, but fingers crossed you'll be okay. Don't be afraid to increase if you have to. Might as well get the benefits pred can offer.

[PMRpro Ambassador]

It didn't go away but it went down to such a low level of activity that 1mg was plenty to keep the inflammation it was creating under control. Many people have similar experiences - after a few months the inflammation has built up enough to cause symptoms to be felt again.

It is the same as any other flare - try 5mg for a week and then reduce to 2mg and see if that is enough. Though it does depend a bit how quickly you reduced the dose at the end, Our mantra: the lower the slower ...

[Jlml in reply to PMRpro]

Hi PMRpro,

Thank you, that is more encouraging as I really didn’t want to start on a high level again.

Do you think I should stay on 2mg for a long time, this time round?

Is it normal to have pains on the bottom of your feet or is this likely to be something else. I struggle to walk when I have been busy and then sat for a while.

I do appreciate your help, many thanks

[PMRpro Ambassador in reply to Jlml]

First let's get to making sure it is still enough - it may not be! I felt as if I had insoles of a mix of stones, sharp pebbles and broken glass and others have said the same. It went with pred. Not sure what it is but it does seem to be one aspect of PMR. And the stiffness walking after sitting is a common feature of PMR.

[Jlml in reply to PMRpro]

you are an absolute star, thank you so much. I hadn’t tied up my feet with PMR . My Dr had no idea but thought it maybe plantas which I knew it wasn’t.

At least I now know what is causing it and thinking about it I didn’t have it when I was on Pred 💡

[Karendeena]

Hi Jlml I found myself in the same position as you last year and again a couple of months ago. Both times I almost cried to my Rheumatologist not to put me back on prednisolone....but ....I relented, 1 because I know it's really the only med that reduces the inflammation and rids me of pain and 2 because the inflammation can cause more damage to the body. I am back on 5mg and told 1mg reduction every 2 months. It's going to take a long time but I don't want to keep relapsing

[Jlml]

Thank you Karendeena,

It is so upsetting isn’t it.

I was absolutely devastated after 3 years of hard work to come off pred and become ( as I thought) PMR free.

I wrote to my GP yesterday requesting to try 5mg for a week and then drop to 2 mg for a while to see if this is enough as suggested by PMRpro.

She has written to my rheumatologist.

What level did you restart?

[PMRpro Ambassador in reply to Jlml]

"She has written to my rheumatologist."

Has she no authority of her own? The trial alone makes sense.