Steroid withdrawal or flare?

[Maryis80]

Since posting two days ago, I have had increasing pain and stiffness which has spread everywhere, almost as bad as it was when I was diagnosed 16 months ago. Can hardly walk and stairs are impossible! Have not had a reply to my email that I sent to the (private) rheumatologist and am wondering if I should try and get an emergency appointment with GP on Thursday and see whether she thinks I should increase the Pred a bit more. Tomorrow we are going on a garden visit, think my husband may have to find a wheelchair for me.

[DorsetLady PMRGCAuk volunteer]

Hi,

Did you go back up to 10mg as suggested?

If not, then that might be wise. If you can speak to GP that would be good, at least then you can tell Rheumy you had to do that because you didn’t get a reply from him!

Good idea to get a wheelchair for tomorrow!

[SheffieldJane]

Definitely see your doctor for an emergency appointment. This sounds too severe to be withdrawal symptoms. It sounds like a proper relapse - poor you. Too bad of your consultant not replying. I hope you have a good wise doctor. Let us know how you get on.

[Grants148]

I should definitely see your doctor,l have been having a nasty flare and increased my dose of Pred., as suggested on here and l am beginning to feel much better today but still taking things easy. I am so grateful for this site and for the lovely people who are so well informed about PMR. Good luck,l wish you a good recovery very soon xx.

[Maryis80 in reply to Grants148]

Thanks you to those who have replied to my recent post. I really feel almost worse than I did when this all started in April 2017. Will go on the outing tomorrow and then see how I am on Thursday and nag the surgery for an emergency appointment.

[Mary63]

And go up to 10mg? I would do that if you haven’t already done so. Especially as you have not been able to get hold of a doctor for advice.

Mary

[Monkeymate]

Halo Mary , just read your post so hope you’re feeling a little better .an that you were able to go an enjoy your day out , thinking 🤔 of you x

[Louisa1840]

Hello Mary,

You and I are about on the same path as I have had PMR for 15 months and am struggling to get below 9 mgs. When I try 8 and a half, I ache all over and quickly go back up to 9! So I have been asking myself is this steroid withdrawal or a flare?

I have heard it suggested that when you get down to around 10 mg to stay on it for a YEAR?

Eileen one of the Forum Gurus always says " Find the lowest dose of pred which deals with your symptoms . There is no rush to reduce. Trying to taper too quickly can result in a serious flare and the ensuing damage to your body caused by the un- dealt with PMR inflammation is simply not GOOD!

Blessings and Go Well!!!

[Oldman-1]

Hi Mary, there are many folks who can relate to your situation. I`m pretty sure I`d be right in saying there is no rule of thumb with this, only a rough guide. On here, is without doubt the best place to air your problems. Don`t suffer in silence, get a diagnosis off your G.P.

[PMRpro Ambassador]

If the pain is getting worse with time it is a flare - steroid withdrawal starts immediately after the reduction and gets better over the following week or so.

[Maryis80 in reply to PMRpro]

Thanks to everyone for your advice and good wishes. Had a lovely day today at Anglesey Abbey Gardens, NT property near Cambridge. Wonderful dahlias. Luckily my husband didnt have to take me round in a wheelchair as my legs etc. worked fine. Just hope I dont get a relapse tomorrow.

[daworm]

same boat...trying hard to get under 10mg, a lot of aches and pains have returned...so I go back up for a day or so to 10, then try again, 9 1/2...9....one of these days it may stabilize...I hope...I know I read somewhere where an "expert" in this PMR stuff has people stay at 10mg for one year, but I can't find that again...are the adrenals trying to kick in, is it the PMR?? Don't know but 9mg is tough...

[PMRpro Ambassador in reply to daworm]

rcpe.ac.uk/sites/default/fi...

[daworm in reply to PMRpro]

👍👍 thanks!