“Worry often gives a small thing a big shadow.”

Ok, not so much worry, as concern... I tapered down from 70 mg to 65 mg, last Wednesday, with no noticeable changes in the way I felt. However, Friday night and yesterday found me highly fatigued and in pain! The muscles on both sides of my neck (the ones that run down into the tops of the shoulder), across the upper part of my back, into my shoulder blades/arms, my thighs; and when eating dinner last night (a chicken breast!) I noticed every time I chewed down, I had pain in the right side of my jaw and under my ear.

I've had PMR for years, but it went undiagnosed/untreated until the GCA popped up in 11/17.

There is no headache, no temple pain, no weird pain behind the eyes, just these annoying body aches! I have a very high tolerance for pain, so the pain is not the issue. The issue/question is, why do I have what seems to be PMR pain while on 65 MG of Pred?

Should I be concerned?

[SnazzyD]

My rule of thumb has been that if I was ok before and I’m within 7 days of a reduction and I suddenly feel rubbish (achey and flulike), it is withdrawal. Usually it kicks in day 3-5 and lasts for 1-3 days. I have had jaw pain often but I think it is a tmj problem due to Pred ravaged muscles because there are no other symptoms and it comes and goes. When I had jaw claudication it was more like my muscle was running out of steam and cramping up. This tmj pain is different. My other rule of thumb is, if Bowen therapy sorts it, it isn’t a flare. If my GCA has thought about it, for me it is a very specifically sited niggle or pain in my temple.

[Hidden in reply to SnazzyD]

Very helpful and comforting... thank you! I also learned something new; Bowen therapy! Cheers.

[SnazzyD in reply to Hidden]

I like Bowen because it is kind to my Pred muscles. Before Pred I liked a good firm massage, now the idea sends shudders. I embrace complimentary therapies but have a very sceptical side, which really thinks it really shouldn’t be working, but for me it does.

65mg I would have thought would be overkill for PMR so the pains ought not to be that, though the wise ones will comment soon.

I would add too that I really did notice 5mg drops at higher doses which was surprising.

[Hidden in reply to Hidden]

As you get more used to the condition and your symptoms when tapering you do learn to.identify steroid withdrawal as it effects you and your symptoms markers. My steroid withdrawal issues are pain in my right shoulder and fluey feeling within a couple of days of reducing. They tend to settle by the end of a week or so. My "flare" markers are bilateral thigh pains after about 12 to 14 days that just get worse until I add 0.5mg back to daily dose.

It must be more scary when you have GCA and the jaw pain starts but as snazzy says could be tmj issues that are visible because of pred and will settle. See how you feel ice the next few days and talk to Dr if you feel the need. Hope it calms down soon. You have had a week or two of good and bad stress which will bounce you around.

[Hidden in reply to Hidden]

Thanks also a very helpful and calming response! I'm feeling less concerned already.

[PMRpro Ambassador]

If you dropped from 70 to 65 just before it COULD be that - steroid withdrawal "rheumatism" tends to resemble the illness for which you are taking the pred.

And if it is tight/spasmed muscles then that can break through pred. That is what causes that sort of pain for me.

Is the jaw pain there with the first chew? And does it persist until the second and subsequent chews?Claudication pain tends to appear after a few repetitions of the action and then go when you stop but it also tends to remain between the actions.

Oh yes - and I agree with Snazzy, a good Bowen therapist is a boon! I have massage and manual mobilisation too - yet it hurts at the time but it does work.

[Hidden in reply to PMRpro]

Thank you! And good question! I had never had this jaw/chewing pain, so I was more surprised than anything when I did notice it. It only hurt when I was actually chewing... like my jaw was being challenged with something glutinous, hard and stickie, but it was only a soft piece of chicken breast! I'm looking into Bowen therapy!!! Thanks

[sondya in reply to Hidden]

It was horrible! Took ages to eat. Each chew locked the jaw. For a devout foodie, that was hell.

[mngirl]

When my shoulder pain was I went for a 1/2 hour massage. I told her to go easy because I was already in pain. That was a month ago and it really helped. I haven't had shoulder neck pain since

[DorsetLady PMRGCAuk volunteer]

Hi mamici1,

Would think it’s most likely to be steroid withdrawal symptoms, I always felt a bit iffy for a couple of days when I tapered at high doses.

Did your taper coincide with your visitors by any chance?

Hopefully if withdrawal symptoms should ease within the next day or two.

[Hidden in reply to DorsetLady]

Thanks, hopefully it is the steroid withdrawal.

I did feel a bit better today, not as exhausted, although still a little achy in the neck and shoulder area.

No, my company has not arrived yet, they arrive tomorrow evening.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Well, take it as easy as you can (not much chance with lively grandson I know, but try!). But most of all ..enjoy their company.

[sondya in reply to DorsetLady]

I liked Eileen's 'steroid withdrawal' rheumatism. Stiffness around mid-back, no real pain, just the occasional twinge. It describes it well. And thanks. I was getting bit worried.

[JulianJ]

So sorry to hear you are getting pain, I hate it when my neck plays up. Good luck in getting it under control.

Before starting DorsetLady 's taper I used to have pain a few days into the reduction, I found popping 1mg eased it and I was good to go, sometimes I had to pop another the next week. I didn't realize it was withdrawal until reading about it on here.

[Hidden]

Thanks Julian. I'm looking into Bowen therapy, as it came highly recommended here on this site. For some silly reason I assumed that on these high doses, I wouldn't feel a 5mg reduction... : (

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

It’s still a reduction...so bound to get a little reminder, if nothing else!

[SheffieldJane]

I have had to give up my pillow. My weakened neck muscles hurt like a pair of steel ropes at either side of my neck. That was caused by sleeping at a slight incline. Trouble is lying flat gives me a blocked nose and a very dry mouth. Sometimes I choose the neck pain. Oh the joy of it all!

[Soraya_PMR in reply to SheffieldJane]

Thought of using a large foam wedge? That would elevate your head but not put the strain on your neck.

[borednow in reply to SheffieldJane]

Try this - use your normal pillow and also a thin piece of memory foam (same width as pillow but only about an inch or two thick - Dunelm sell memory foam in different thickness blocks). Put the memory foam under your shoulders so you've got a sort of extended pillow system i.e. no definite gap between your head and shoulders - a sort of sloping pillow system from your waist up to top of head.

Does that make sense?! Here endeth the ramblings of an elderly woman .........................

[SheffieldJane]

That is sheer genius borednow. Thank you for troubling to describe a solution. You too Soraya. I am clearly not thinking outside of the box enough.

[borednow in reply to SheffieldJane]

AND just to show what a clever little thing I am, I purchased a spare which fits nicely in my suitcase for holidays!! Didn't actually think of that until the morning (at a disgusting time) of my impending departure to Spain when I realised that the one I use everyday wouldn't fit into the suitcase (too many clothes). BIG panic, loss of several (obviously crucial) items of clothing and I got it in. Never again. So my "Holiday foam thingy" goes back into my case for my next trip away. As my glorious son often says - nobody likes a smart arse Mum.

[SheffieldJane]

Nobody would challenge you if you carried that on to a plane and used it as a headrest for the flight. Your cheeky son doesn’t know when he’s well off.