PMR Tapering on Predisolone and appearing symptoms

[DD25]

Hi, I’m currently on 9mg of Prednisolone, for PMR, having tapered from 15mg which I started on last July. My rheumatology appointments have been cancelled, understandably, and I have been left to try and bring down my own dosage.

My question is that, now I am on 9 mg I am experiencing pain and ‘crunching’ in many of my finger joints, wrists and toes, is this something I should just work through and carry on tapering in the hope that is goes, or is this considered a flare and I should up my dosage? I am also finding turning of lids, cutting veg, typing, small motor movements painful. My GP is not being very helpful.

Is anyone able to give me any guidance? Thank you.

[DorsetLady PMRGCAuk volunteer]

No you shouldn’t work through it if you had it more than 2-3 days (when it could be withdrawal symptoms) - any longer and it’s likely to be a flare.

You could try recommendation if upping to 15mg for 5-7 days - which hopefully should control symptoms - then drop back down to 10mg. Not 9mg as that’s obviously too low.

Stay there for a couple of weeks, then try a slo taper (link attached, there are others ) and/or try reducing by only 0.5mg a time.

healthunlocked.com/pmrgcauk...

[DD25 in reply to DorsetLady]

Thank you very much for your reply, that helps enormously. My GP has said my symptoms are not PMR symptoms and to ignore them. They are symptoms I’d had prior to diagnosis and have only come back from tapering so my inclination was to up my Pred. Your answer has reassured me and I will do as you suggested.

Thank you.

[DorsetLady PMRGCAuk volunteer in reply to DD25]

Does your GP have a crystal ball then? and it can be dangerous to ignore them.

Hope you soon feel better

[DD25 in reply to DorsetLady]

😃 No crystal ball that I know of, but an abundance of opinions that I’ve learnt to distrust! I was tapering using the method you’ve linked to as I’d found going down 1mg at a time to difficult like he’d said. So I shall up it from tomorrow and then go back to 10 as you’ve said. Thank you again.

[PMRpro Ambassador in reply to DD25]

Oh dear ...

[PMRpro Ambassador]

Are they really confident about the PMR diagnosis? PMR isn't the disease - it is the name given to a set of symptoms and they can be due to other underlying things besides the autoimmune disorder we talk about here. It can also be the first thing you notice about some forms of inflammatory arthritis - affecting joints rather than muscles.

Did you have anything similar before pred? I had hand and foot pain but it resolved with pred after a few months and has never returned in the same way even during a flare.

[DD25 in reply to PMRpro]

I believe they are confident of the diagnosis, I’ve had arthritis for about 10years and then new symptoms appeared, I was put on Pred and overnight almost all of the pain and stiffness went. My rheumatologist who I had just started seeing, wanted me to come off the Pred to try methotrexate but with Covid, I haven’t been able to see or speak with her to discuss it further. All my xrays and bloods I haven’t received back as my last appointment was in Feb just before everything shut down.

I did have pain in all of the areas I mentioned before the PMR diagnosis but I believe it was the stiffening of the knees, not being able to walk, other than shuffle and problems with my shoulders which moved me on from straight arthritis.

That’s interesting that your “old” pain has never come back in a flare. This is my first experience of pain and problems coming back since taking Pred. I’d love to even be able to email my rheumatologist by have no contact details, though I’ve tried to get them from the hospital. Can I ask what happens to you when you have a flare?

[PMRpro Ambassador in reply to DD25]

It doesn't usually get that far - I recognise the signs: increased night sweats, pain deep in the hip joint, and up the pred. I do get a bit of muscle pain - but not the foot and hand pain usually although currently I've had sharp tendon pain in a couple of fingers. That is pretty unusual.

If they are confident that it is PMR - you don't come off pred to try methotrexate. You might try mtx alongside the pred to see if you can get lower but that isn't the same at all.

[DD25 in reply to PMRpro]

That is good to know. I know so little about it. My first Rhuematoligist was I feel a bit gung-ho and didn’t really listen, poor follow up, so I changed back into the NHS system having had a better experience previously within it. I like my new Rheumatologist but have Only had one appointment with her so all these questions would be great to pose to her. She was the one who mentioned methotrexate, maybe I have misunderstood. I’ll do what you suggested in your first post and then keep trying to get hold of her, even if she can just email me or have a zoom appointment!

Thank you

[Scotty7]

Hi like you I have been trying to taper,my appointment was also cancelled. I call hospital and was put through to a rheumatology helpline, they called me back the next day ( last Thursday) and arrange for me to have bloods done with my GP once results back my consultant is going to call me. Hope this helps you and your hosputal has a similar helpline, I am in Manchester

[DD25 in reply to Scotty7]

Thank you. I was given the Rheumatology tel number but no one answers, it doesn’t seem to matter what time I call.

I will try the hospital again tomorrow to see if they maybe have a helpline number. I’m in the south so unfortunately not the same hospital as your efficient one.

[PMRpro Ambassador in reply to DD25]

Is there no answering machine? Sometimes it is better to ring the hospital switchboard - numbers change, an office may be out of use, especially at present, not all departments are open with staff working on other wards.

[DD25 in reply to PMRpro]

No, no answering machine. It’s the number switchboard gave me but I will persevere and see if there is a different one to call.

[Scotty7 in reply to DD25]

The switch board may be able to help you at the hospital