painful shoulders after dead slow taper to 2mg.

[HelenDaisy]

I was diagnosed with PMR in March 2019. I’ve finally managed to get to 2.25mg prednisone on a slow taper taking a month for 0.25mg drop. I also take Leflonamide which was doubled to 20mg a month ago to deal with probable RA in my hands. (Pain and swelling. It has helped). I’m diabetic due to steroids.

I’ve just started a drop to 2mg, again using a slow taper over a month. But for the last 5 days my shoulders have been hurting and getting worse. It’s not equal though, my left is worse and I’m finding it hard to dress. My question is this: must shoulder pain be bilateral in PMR? I don’t feel I have an injury although I have had past surgeries for decompression of the AC joint at the shoulder.

Second question; Would 5 days of increased prednisone be a good idea? Increasing by 5mg to 7.5mg. Can I come straight down to 2.5 after 5 days, where I appeared comfortable?

Feeling so fed up after seeing the end in sight. Thank you for any answers.

[PMRpro Ambassador]

No, realistically it doesn't always have to be bilateral and equal. It isn't unusual to find one side starts before the other in a flare.

I know 1/4mg in a month sounds slow - but it was still a good 10%. Once you get back to 2,25mg give it a month or so at least before starting on the next step - I suspect you were at the borderline anyway.

Yes - in the flare protocol you can drop straight back to your previous good dose after 5 days - you can theoretically do it after 10.

Don't get carried away at these low doses - even as little as 1mg every other day can be plenty to keep the inflammation due to very low activity disease under control. I know that isn't what you want to hear but it is the fact, Some people take as long to get off the last couple of mg as the previous 15!

[HelenDaisy in reply to PMRpro]

Thank you. I now realise I was getting a bit too optimistic! My PMR isn’t quite done with me yet. I’ll increase to 7.5 for 5-10 days. Luckily I have a rhuematologist appt in June and they are very relaxed about a super slow taper.

[DorsetLady PMRGCAuk volunteer]

PMR is usually bilateral - but it can start on weaker side [as you describe] and then move t’other side!

Would agree with your plan to increase and then down to 2.5mg… but under flare protocol you can stay on higher dose for up to 14 days without worrying about drop back down. So jut make sure you are on increased dose long enough to mop up all inflammation, or it’s a waste of time.

[HelenDaisy in reply to DorsetLady]

Thank you for your reply. I appreciate your input on a sunny Sunday! Is 4pm too late for a 5mg top-up? I'm usually an 8am pred-taker.

[DorsetLady PMRGCAuk volunteer in reply to HelenDaisy]

Never too late for a top up! 😊

[HelenDaisy]

I have another quick question: it’s now 4pm. Is that too late to take the top up 5mg? I usually take my pred at 8am. But I would like to get some relief!

[PMRpro Ambassador in reply to HelenDaisy]

No reason why not though you may not sleep so well.