I could kick myself!

[braininjurythepits]

I ignored the painful twinges in my right shoulder for a few days until it became a concern — if only I hadn’t persuaded myself that I must have injured it somehow, I was so hopeful after being pain free on 8mg of Prednisolone for a couple of months, and three weeks into a reduction to 7.5mg — it surely couldn’t be PMR? Well, I was so wrong, and, despite going to my rheumy and getting a booster jab, and the shoulder slightly improving over a few days, I believe I am suffering my first full blown flare! Pain stretches from my shoulders up into my neck, behind my ears, and up to the top of my head. So, I tried being on 8mg again for this last week with little effect, upped it to 8.5 this morning, but I’m wondering if I should not take it slowly and go back to my starting dose of 10mg for a while, before I try tapering again. I would so appreciate any advice or similar experiences, the wealth of knowledge on this forum is so important to me. Thank you....

Was looking forward to Christmas, but not so much any more, London

Diagnosed Sept 2018 starting dose 10mg

[HeronNS]

I've just had some similar problems with a shoulder which has troubled me for some time. I believe it is an "add-on" not PMR itself but the result of having muscles weakened by PMR and pred. Have just come back from a physio appointment and my therapist believes the pain is referred from my arthritic neck. If pred didn't help you much I wonder if something like this is going on with you. Injuries can mimic PMR, and vice versa, so it's difficult sometimes. I'm definitely much better when I treat this shoulder by mechanical means (exercise, targeted massage).

[Mrsd12f in reply to HeronNS]

Hi! I’ve got something very similar, affecting my left shoulder and neck. Had a massage with a physio, on Wednesday, and it’s definitely helped. I do find it difficult to distinguish between the PMR pain (which has always affected my shoulders, ribs and neck) and other sources of pain which have crept in, over the five years I’ve had this delightful condition, and which have perhaps been disguised by and/or exacerbated by the Pred. Paracetamol seems to be helping, so probably a combination of arthritis and muscle weakness.

Heigh-ho! I’d like to say “Onward and upward”, but sometimes it feels more like “backwards and sideways”!

A happy and as pain-free-as-possible Christmas to all!

[braininjurythepits in reply to HeronNS]

Hi Heron NS, thank you for your very helpful comments, I’ll definitely consider your advice if things don’t improve! I hope you have a lovely Christmas 🙂🎄

[PMRpro Ambassador]

If it really is a flare due to overshooting the dose you need, top experts suggest adding 5mg to the dose at which you flared for a week to 10 days maximum (although 3-5 days may well be enough) and then dropping back to the dose above which you flared.

If that doesn;t work it may be something else as Heron suggests - but in my book, if you get a return of symptoms that coincides with a reduction in dose, it is to blame until proven otherwise.

[braininjurythepits in reply to PMRpro]

Thanks for your invaluable advice PMRpro, I’ve today embarked on a five day 10mg dose (my initial start), will see if it sorts things out — I was a little perplexed that the booster shot didn’t have much effect, but interestingly for the first time took some paracetamol for the pain today and feel much better (touch wood!). I phoned my rheumy’s secretary and will email him with symptoms and see what he says. As always, you are the first point of call here, and you are so appreciated! I wish you a wonderful Christmas! 🙂🎄🎄🙂

[Dilly-B]

I can’t help with advice as I am too new to this. But - I hope you feel better soon. I am so sorry you are in pain and frustrated.

[braininjurythepits in reply to Dilly-B]

Thank you, and have a lovely Christmas! 🎄🙂🎄

[_multistrada]

Same here same problems same dose, I went to my Chiropractor which helped a lot however I did take the steroids back up to 10 which has helped a bit, I understand your frustration is nice is nothing else just a bit of tell people about if you understand have a great Christmas

[braininjurythepits in reply to _multistrada]

Thank you multistrada, I hope you have a lovely Christmas! 🙂🎄🙂

[aladymo]

I did the same thing, got down to 12 mg from 60. Started getting head aches, temple pain. Went to rheumatologist he put me back up to 25 mg. My markers are not up at all, two weeks later head pain still there ( no worse) but no better. What next ? I have read listened and learned for almost 2 years here. Now I’m back at square one. I feel so discouraged. He is recommending Actemra , but I’m worried about the head pain right now. Has anyone else been up so many mg with a flare ! My original PMR pain is not around ✔️ ( hopefully I’m not speaking too soon).

[PMRpro Ambassador in reply to aladymo]

Mmmm - but he wasn't treating it as a PMR flare, he was treating it as potential GCA with those symptoms. And possibly, if it is GCA, the 25mg isn't enough. In some people the markers don't go up while they are still on pred, it takes enough of the inflammation out for the liver not to produce the proteins that lead to the increases in numbers.

I think you need to speak with the rheumy.

[aladymo in reply to PMRpro]

I was originally diagnosed the GCA last October and I cannot believe that would come flaring back like this so fast. Should I contact him or leave the 25 for another couple weeks

[PMRpro Ambassador in reply to aladymo]

Why not? It is said that GCA is very likely to flare in the first 18 months. To be honest, I'd say getting to 12mg in barely over a year was pretty fast - if you hadn't had PMR first that is what you would be looking at.

[aladymo in reply to PMRpro]

I’ll call today and thank you very much for the reply I didn’t see your last statement when you said I need to speak to the rheumatologist.

[nuigini]

Like others, I've had problems with a one shoulder affecting my neck from time to time, and one hip from time to time, neither of which have been PMR. If the pain I'm experiencing isn't bilateral I can pretty much rest assured that it isn't PMR. In these situations over the counter anti-inflammatory medication, icing, and the proper stretching exercises help ease the problem.

Then again, the one shoulder or one hip problem have also progressed to bilateral issues in the past and I develop other of "my typical PMR symptoms" and have to accept a flare.

[Purplecrow]

shoulder pain has always been the first indicator of a flare for me. Nagging dragging and annoying, the pain continued to increase until I finally treated it to an increase in prednisone (usually returning to the last dose where I was pain free). Over time, my flare pain pattern has shifted to various low back and hip locations. From Sacroiliac to Trochanteric pain, it seems never to end.

Jerri

PMR diagnosed 2013

[Hidden]

I was diagnosed with 'presumed' PMR in 2017. Started on 15mg steroids which didn't quite do the trick. Rheumy said