Reduction of prednisone and night pain

[Plains]

I have been slowly reducing my prednisone while doing Actemra. I reduced to 2 1/2 mg three days ago. I am experiencing shoulder and some hip pain while sleeping. Once I get up it is much better. Could this be happening because my body is getting used to the reduction in prednisone? I really don’t want to go back up since it feels better once I get up and move around. A hot shower helps too. Maybe it’s just old age…

[SnazzyD]

Both sides?

[Plains in reply to SnazzyD]

yes both

[PMRpro Ambassador]

Poor adrenal function can also cause similar symptoms so I would be inclined to stop the pred taper for now and see what happens. If it gets worse it is the PMR, if it improves or stays the same more likely adrenals. I have found that even with Actemra it has been a very slow process and have gone back up a mg a couple of times - when I tried the lower dose again it went much better. Even Actemra can take a while to work.

[Plains in reply to PMRpro]

thank you !

[SnazzyD]

At only 3 days in I wouldn’t panic yet as it may be withdrawal. I also found lack lustre adrenal function gave me aches and pains.

[Plains in reply to SnazzyD]

thank you for your input.

[Nextoneplease]

I have also started to get pain in my right shoulder blade and upper back when I lie down, especially at night. I have grocery shopping delivered (thank heavens!) and have just really struggled to unpack maybe eight bags. General aches and pains and also weak muscles….

I am on 8mg having just stopped a taper to 7.5mg. So difficult to differentiate between adrenals, PMR and ‘other’ eg arthritis! 🤷‍♀️x

[Plains in reply to Nextoneplease]

yes, I am just going to go with it. It does subside once I get up and start moving around.

[Missus835]

When I mention the shoulder blade pain to the Rheumy she looks at me like I have 2 heads and also like she hasn't heard of "shoulder blades" before. It is usually the first pain to rear it's ugly little head. So I have to explain that it's in the thoracic area and quite often extends up into the neck and lower head. This poor woman (and she isn't old), is also a Professor at Dalhousie U. here in Halifax, NS. How can this person know so little about PMR/GCA? This is downright scary.

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

Perhaps she was asleep the day they covered it at medical school. 😳

[PMRpro Ambassador in reply to DorsetLady]

Not even a whole day, one lecture probably does ...

Is she a rheumatologist? It is a massive field and if her interest is lupus or RA there is a big difference

[Missus835 in reply to DorsetLady]

I know right...and what's with the hands over the head test. I've seen her twice and both times she has asked me to lift my arms over my head. The first time I explained, it was never a problem to do that. It's the reach back and down (i.e. to pull clothing on, or clean oneself after toileting). Does she not realize that the pred alleviates this?

I'm thinking they all need to take the blinders off and if I could email her the link to the T2T paper, I would. I do believe I will send it to the neurologist, because I know he would be receptive to the information within. Perhaps I can suggest he forward it to her. Thanks DL.

[PMRpro Ambassador in reply to Missus835]

I do sometimes wonder if they have any understanding of WHY they put us on pred!

Have you got a snail mail contact for her?

[Missus835 in reply to PMRpro]

In fact Pro, I do not think many do. Then they wonder why the pred is doing what it's supposed to and have no interest in looking at anything else, as long as the inflammation is under control and the CRP is normal-ish. I have had many times where the CRP is not normal and actually high and receive no follow up from her at all. That's when my tenacity kicks in and I go through every possible channel. No contact for her whatsoever, even snail mail. We shall see if the neurologist is successful today in reaching out to her.

[PMRpro Ambassador in reply to Missus835]

Hasn't she got an office?

[Missus835 in reply to PMRpro]

See reply to Plains. Sorry.

[Missus835 in reply to Missus835]

Oops lost it.

[Missus835 in reply to PMRpro]

She has a private practice to which I am not privy. Financial constraints. So I am stuck with the clinic where she is 2 days per week. I have tried calling the private practice but they shuffle you over to the clinic nursing line where you cannot leave a message for her...nothing. They simply say go into ER or a walkin clinic. An exercise in frustration. Hope springs eternal with the neurologist who has reached out to her in the not so distant past.

[Bluey-1 in reply to DorsetLady]

A friend’s niece is in medical school. She had a lecture on GCA recently. My friend had previously discussed my condition with her so she took a particular interest in that lecture as she’d already heard of GCA via her aunt. One can only hope for more awareness. I was fortunate that my GP suspected it and takes a special interest in my case. It feels like the 1970s. I see the same doctor regularly now.

[cranberryt]

Wheny dose gets too low, night pain is usually the first indicator for me. Sometimes I am able to split my dose to overcome it. But if it persists I must bump my dose back up my 1/2mg and stay there a month before trying again.