I have a real pain in the butt...

[GOOD_GRIEF]

I've been reducing from 20mg Pred on August 31, down to 15mg Friday, and now my butt hurts. I never had this symptom before. It's odd that my arms and hands have improved, but that my thighs and buttocks are killing me.

Any ideas?

[DorsetLady PMRGCAuk volunteer]

Hi,

Sounds as if it’s myofascial pain syndrome or bursitis ( although latter is usually one sided).

Many on here seem to get both or either along with PMR.

I’ve got Bursitis at the moment but totally unrelated to GCA, mine’s associated with arthritic knee and walking unevenly - but mighty painful. Been having massage and acupuncture, and it’s helped greatly.

Some find Bowen Therapy or Physiotherapy is good as well. But whoever you see, make sure they know you have PMR.

[GOOD_GRIEF in reply to DorsetLady]

Hi Lady Dorset:

This seems to have started as bursitis on the right side as the ache was in the thigh, well below the hip.

Now the other side is aching from, I think, compensating. And the pain in the right buttock is a sharp pain - but only occasional, mostly when I pivot.

Nothing hurts when I'm sitting or lying down.

Have a regular appointment with the rheumy I've been fighting with tomorrow.

Will report back...

[DorsetLady PMRGCAuk volunteer in reply to GOOD_GRIEF]

Hi Good_Grief,

That sounds very familiar, so get it sorted as soon as you can, it will only get worse on it’s own!

PS - thanks for promotion, but I think HM might have something to say about it! 🤦🏻‍♀️ The first Elizabeth would have had me beheaded!

[GOOD_GRIEF in reply to DorsetLady]

Well, we Yanks really don't know much about the royal ranking system.

And now that we're looking to trump Trump, we have no time to learn.

[Soraya_PMR]

I had buttock pain pre pred, but then it settled more into thighs and hips. I felt it again after reduction but it passed, think it was withdrawal stuff?

Felt to me like I’d been horse riding, the areas you might expect to pull unused muscles. Was never more than an ache though. (Compared to sciatica that kind of runs through buttocks, and for me was a nasty pain)

[GOOD_GRIEF in reply to Soraya_PMR]

I've got the nasty on the right side, aching in both thighs.

It never ends, does it?

[Soraya_PMR in reply to GOOD_GRIEF]

It does seem endless 😧

Piriformis spasm? Squidging your sciatic nerve?

Good luck with rheumie, tin hats at the ready!

[Carrollee in reply to GOOD_GRIEF]

Hi GG

Have you looked up sacroiliitis, I had 4 bouts, twice on each side early on in my pmr/GCA journey and at higher doses. Never heard of it or experienced it prior to that. Just a thought cc 🤓

[Hidden]

Yes I periodically get the buttock pain and usually have thigh soreness after walking. The butt pain was terrible, like some winding the muscle like an elastic band to extreme, going uphill or stairs. Even standing chopping veg for tea. I had it for about 5months really intensely. Seems to have improved lately, but I do avoid uphill as much as possible. My solution to all pain these days is vigorous rubbing of the muscle in question. lol. People must have been a bit concerned watching me rub my bum cheek as I walked around.

[GOOD_GRIEF in reply to Hidden]

I wish I could avoid uphill. but alas, live at the top of a steep one...down in the morning and up at night.

[PMRpro Ambassador]

Has anyone suggested piriformis syndrome? That leads to buttock pain and referred pain into the thighs when the sciatic nerve is involved.

[Soraya_PMR in reply to PMRpro]

Oops you beat me to it!

[1Purplecrow]

Early in my pre-prednisone PMR journey, painful buttock and upper back-thigh muscles were site of some of my pain. Rather like post-exercise soreness/pain. I thought is was strange to have soreness in that location, but never fear....., pain was equal opportinity, and moved all around my muscles, with shoulders, neck, back, and arm muscles the most persistent sites.

Most of my pain was quickly sorted out when I started on Prednisone, and hasn't returned except the occasional short-term flare caused by over zealousness in some activity.

Kind regards, Jerri

[GerriMc]

One of the most difficult symptoms I have had is burning pain in my glutes. I had to stop the car and get out and stretch several times as it was too sore to stay sitting. Every time I drop down to a lower dose of Pred, I get a little of this. It’s, thankfully less and less these days. I also get a pain between my shoulder blades but that is quite different, no burning.

Hope you get sorted soon.

[Rosedail in reply to GerriMc]

My experience was very similar to yours.

[christine2715]

Yes, I also have Bursitis which is what you describe. You need to sit on a soft cushion as much as you can. It was once called tailors bum and was due to Victorian tailors sitting on hard tables when they worked I believe.

[GOOD_GRIEF]

I have a lovely upholsered office chair, thanks, currently lined with a heating pad. And I have a lap blanket over my legs. I have an alarm set to go off every 50 minutes to remind me to get up and move (or I could stay sitting there for hours and hours without ever breaking concentration.)

[Rose1bud]

The same with me my but also the back of my thighs and down to my calf’s especially when I walk I have to stop and reat

[Brandon47]

They are the biggest muscles - you may have reduced the pred too quickly - it's taken me 18 months to reduce from 20 to 5 but those muscles still hurt a little when I've played golf etc. I just ride the pain til it goes or take paracetamol. Hope this helps.

[Rugger]

Some say reductions should be more than 10% of the previous dose, so maybe you could try 18mg and see if that helps? We're all different, so you have to see what works for you.

[Sandy1947]

I have butt pain from overdoing on the leg press machine. For the first time since June, I did 3 sets using 30 pound plates. days Pain is getting better after 3days. I didn’t realize the extent muscles weaken with this condition. I sometimes think I’m just babying myself so I ramp up intensity only to pay later. Did the same with Zumba...went from 30 mins. to 45. Not a good idea.

[Rosedail in reply to Sandy1947]

HI Sandy: I really struggled with the "drive to ramp up" as well and still do now that I've been off the prednisone for almost a year. Exercise is so good for our health, it just seems counter-intuitive not to push through. Men and women decades older than I can be found everywhere in my gym, exercising at much more rigorous levels. But I've found that my joints and ligaments are very susceptible to injury, even from innocuous activities like kneeling for a bit. This weekend I went for a hike of only a few miles with friends. They are far stronger hikers, but I compared myself to my own levels even a few months ago and found that my knees were much, much better. I did notice the cold, wet weather kept my leg muscles a bit achy for the entire hike.

[Sandy1947 in reply to Rosedail]

I get it! Our bodies and abilities constantly change although we don’t adjust at the same rate mentally!

[podo]

Have got this for past few weeks + pain down legs as well, worse on right. I did try upping Pred from 4 to 8mg for a couple of days and it had some effect I think but didn't cure it. For the moment have given up leg excercises in the Gym and bought some walking poles which help over rough ground. Just trying not to exacerbate the problem and see if it goes away!