GCA now PMR advice please

[Viveka]

GCA 23 months down to 2. 5 no GCA symptoms for months. Have never had PMR symptoms.

R shoulder impingement flare for last few months; bony spur - this flares every few years but usually calms down after a couple of months. L shoulder (weak due to operation and slight nerve damage) coped very well with doing more work.

On last two days of 8 weeks on 3mg I started to have grumbling in L shoulder. Reduced to 2.5. Grumbles continued for 11 days; went away for 4 days; then back worse for 7 days. Main symptoms in both shoulder joints at front were horrible stinging and soreness. Stinging pain if I slept ont them. The gentlest exercise made this worse. Some aches around shoulders and L shoulder blade but not too bad and go with relaxation. L shoulder no problems with movement. R shoulder just the impingement movement problems.

Also very strange prickling sensations travelling all over body.

Felt pretty well 'in myself' (although gutted) but on day 21 felt really wretched. Luckily had prebooked a rheumy call. He thought it could be a bit of PMR and said I could either go up to when last ok (3 or 4) or up to 7 for a week or so then down.

I compromised and went to 5. About 50 pc improvement over 4 days but felt it was gradually returning and last night the stinging when I was lying on my shoulders was back badly. Have gone up to 7 today and will see how it goes.

Questions.

I know PMR can be revealed when on low doses and will need longer on these doses to settle. But I wonder, as it is not settling, if instead of being masked by pred before, has it started up as an almost new illness? After 2 years of GCA do people have to go up to around starting PMR dose and then down again. How common is this?

The main problem is stinging and sorenes in the joints which sometimes radiates into the arm. Haven't seen people mentioning this on the forum. Does it ring any bells?

The extreme reaction to gentle somatic exercise? Is this normal in a flare?

Sorry this is long. Wanted to be comprehensive. Feeling distraught because I had been doing so well with the GCA and I always felt PMR sounded more challenging. Thanks in advance.

[DorsetLady PMRGCAuk volunteer]

"On last two days of 8 weeks on 3mg I started to have grumbling in L shoulder. Reduced to 2.5."

My reaction would be, why reduce when you have grumbles....but that's immaterial now, what's done is done.

Have you taken any pain killers for your shoulders just to ascertain whether it's purely a shoulder issue, but if gentle exercises don't help then I have my doubts....and exercise certain can trigger a flare.

Sorry, but not sure about the prickly sensations...

I would suggest you treat it as a flare - whether it's GCA or PMR it really matters not, the treatment is the same in that aspect... so stay at 7mg (even 8mg) for 7-10 days, then reduce probably best in 2 stages - first to 5mg for another week, and provided all okay then down to 3.5mg as 3mg sounded just about on the borderline pf being enough/not being enough.

2 years is not very long in the great scheme of things for GCA, the length it lasts can certainly be a lot longer, and the average seems to be nearer 4 years ....

Whether you have PMR as well , who knows, but whatever get things back under control and then take your reducing more slowly...as we all know at such low doses 0.5mg can make a very big difference.. and there really is no rush.

[Viveka in reply to DorsetLady]

Thanks for comprehensive reply. I was thinking of a tapering regime like that myself, providing it calms down at 7 (8). Crossing fingers... Shoulders no better after 1 day on 7 but my body as a whole feels fab, like joints are made of butter again.

Will explain reduction in reply to PRO.

[PMRpro Ambassador]

Depends what you mean by somatic exercise. When PMR isn't well controlled any repetitive or sustained movement can be very uncomfortable afterwards.

I have stabbing pains at the attachments around the elbow and that radiates into the forearm with any gripping or twisting motion of the lower arm. I have also had the tingling sensations - though mostly isolated. Haven't had any for some time I don't think.

It is a shame you persisted with a reduction when you were having unexplained niggles - I think it is one of the most difficult aspects of dealing with PMR. And it suggests to me that this maybe started rather longer ago than you think,

I'm not sure about your concept of "settling", nor masking. In PMR you are either taking enough pred to manage the inflammation - or you aren't. Even a tiny bit too low a dose leaves a few "drops" of inflammation over and like a dripping tap it will eventually fill the bucket and overflow and the bit that it is concentrated on will hurt. Technically, all you ever do is "mask" the effects of the inflammation. Pred cures nothing, the underlying autoimmune process continues and creates inflammation. You feel it when the bucket overflows so the pred is working as a very effective mop - and the aim is to find the dose that takes enough out of the bucket so it doesn't overflow.

[Viveka in reply to PMRpro]

Thanks. I reduced because I hadn't had any previous PMR symptoms to judge it by, and I thought it might be general shoulder niggles in light of lower pred and the impingement. Also, if it was PMR it would progress, so I would pick it up more quickly so could then deal with it. Rheumy said I could try another week if I wasn't sure, but it was worse by then. Also I have history of GCA head symptoms that get better with tapering. Don't think this applies to shoulders now.

Yes, I am wondering how long it has been going on. The only thing I have noticed is that on 3mg I sometimes felt slightly weaker - legs and arms - in exercise, but I put that down to pred effect on muscles. Generally I felt well and energetic and no niggles other than impingement.