Is it posture? Cold? A flare? Or something else?

[Nextoneplease]

Hi lovely people 😊

I am sitting here feeling very weak and emotional, I think due to my recent and ongoing drop to 7.5mg. I’m in week 2 of a three week taper from 8mg to 7.5mg.

But….as well as the deadly fatigue, I also have some pain issues. I’m trying to sort out whether they are PMR related, or due to something else.

Two days ago, despite exhaustion, I happily dragged myself to a concert with my husband. We went by taxi so I really only had to walk a few hundred yards here and there. The church venue had comfortable seats and background heating. But….after about an hour, I felt a terrific, painful burning sensation from my right shoulder, down my arm, to my wrist and fingers. I realised too late that at home I have an armrest, here there was none. When I got home, I just about managed to pen the front door but struggled a bit turning the key (even though I have a wing adapter on it).

since then, the pain is less, but I am still very stiff, especially in wrist and shoulder. It’s hard to drink from a cup, hold a fork, butter bread…..as as for folding laundry etc! Just not on.

I know I have osteoarthritis, so it could be that, exacerbated by the different seating position on Wednesday at the concert. On the other hand, could I be risking a PMR flare as a result of my ongoing reduction to 7.5?

I have a physio appointment in two weeks time, and also a GP telephone appointment, but if it is a flare, it could have got out of control by then….

What do you think?Should I just wrap myself in cotton wool and sit it out….or go back up to 8mg….or even a bit higher for a few days? I really don’t want to endanger the progress I’ve made and I felt fine on 8mg.

Thanks in advance for any suggestions 😊

Nextoneplease xx

[DorsetLady PMRGCAuk volunteer]

it might be wise to abandon the taper for the moment and return to 8mg… that may well be enough to stop things getting worse. You will know within 5-7 days, so reappraise the situation then, unless it gets considerably worse in the meantime. If it does, then you may need to treat as a flare, but come back and report and we can advise accordingly.

If it’s not PMR, have you tried painkillers - either oral or in topical form?

[Nextoneplease in reply to DorsetLady]

Thank you DL 😊

Painkillers help a little with pain, but not with stiffness and immobility. I’ve used ibuprofen gel, paracetamol and cocodamol.

I will do as you suggest and stay at 8mg for now, disappointing as that is. I have a car trip of 90 mins tomorrow to see a cousin who’s had a stroke (I won’t be driving but it’s all more stress) and also a bit of childcare and a planned cinema trip next week, to see Tar. Phoned my choir today about the lyrics they don’t provide, and found myself getting very emotional. Need to gently put on the brakes….🤦‍♀️

If I feel better after a week do you think I should start week one of the taper again?

Many thanks 💐xx

[DorsetLady PMRGCAuk volunteer in reply to Nextoneplease]

I would give it longer than a week… as you say much going on at the moment… so apply the brakes -gently. …and yes restart from week 1 when, and only when you feel up to it.

Good luck.

[PMRpro Ambassador]

I'd certainly abandon the taper for now as DL says. Bit strange that - if it had been your left arm I'd have told you off for ignoring it!!!

[Nextoneplease in reply to PMRpro]

Thank you PMRpro 😊

See my reply to DL above. Yes, it has felt weird, could be a mixture of sitting awkwardly, adapting to a taper, arthritis, cold weather….and lack of emotional resilience to discomfort due to adrenals not being efficient…?

Anyway, no, not my left arm!

Many thanks 🤗xx

[Bcol]

Agree with DL and maybe think about extending your tapering schedule to more than three weeks. Possibly, try every five weeks and see how it goes, it may work out quicker in the long run.

[Nextoneplease in reply to Bcol]

Thank you Bcol 😊

Have abandoned the taper for a couple of weeks and as you say, may do a longer one when I restart. Although….if the GP/ physio/ general consensus is that it’s arthritis, I’m not quite sure what I’ll do…

Btw have sorted out lyrics for choir….emailed them to my friend in Bristol who is printing them and posting to me! The things we do…..😊xx

[Oboes22]

I thought I was having a flare a few weeks ago and increased from 5mg to 7mg for 8 days and felt good then went back to 5mg. Then the pain started again gradually becoming worse. GP advised going to 6 or even 7 for a month and then taper very very slowly again. My instinct said 7mg and now the pain is easing. I’ve been here twice before and understand how you feel. It’s a horrendous journey we are on. Take care.

[Nextoneplease in reply to Oboes22]

Thank you Oboes 😊

It’s so difficult to judge, isn’t it? I’m on 8mg today, feeling better and will stay on this dose for at least a couple of weeks. It’s disappointing but also we can’t really relax as you can with many other meds, because we’re constantly trying to adjust the dose. Anyway onwards and upwards…

Good luck and thanks again xx

[Zappata]

I suffer terribly from shoulder and arm pain but it is definitely made worse by sitting in a draught. Was the church draughty? I drive my family mad trying to eliminate draughts!

[Nextoneplease in reply to Zappata]

Hi Zappata 😊

This is interesting. Do you know what causes your shoulder and arm pain? I’m leaning to the view that mine is mainly arthritis (what kind I’m not yet sure)….and yes, it is definitely made worse by draughts. I didn’t notice that the church was particularly draughty, but it was a very cold night and there was no one sitting to my right to keep me warm! At home the design of the sofa both has an armrest and a bit of a wingback which does keep draughts off….

Thanks and good luck ☘️xx

[Zappata in reply to Nextoneplease]

HiI have suffered shoulder and upper arm pain for years and always put it down to overuse from computer work, gardening,four kids etc but now that I am on pred it definitely seems to help them so I wonder if I have PMR but it's never been diagnosed, only GCA. Draughts are lethal but hard to eliminate aren't they

[Purplecrow]

I,too, learned that riding in a car without comfortable armrests, will surely reward me with shoulder, elbow, and upper back pain . I now travel with a pillow to support my shoulders, arms, etc. pain lasts week to 10 days. Occasionally I will take extrac5 mg pred, to head off the worst of the pain.

[Nextoneplease in reply to Purplecrow]

Interesting Purplecrow, thank you 😊

Think I will definitely need to pay more attention to posture, and will also see what the physio says on 15th. Meanwhile I’ve gone back up to 8mg and my shoulder and arm seem to be settling down (only minor niggles now 🤞). But, my wrist has lost some mobility and my hand too - another one for the physio methinks!

Thanks again and all the best 😊xx

[Nextoneplease]

Just a quick update. It seems I do need 8mg at the moment as my pain and stiffness have gradually subsided since last week. Still have the osteo pain but since PMR has settled I’m clearer on the difference between the two.

Have had a very hectic week, in A&E for ages with daughter who was thought to have gall bladder infection (but didn’t). And I managed it 👍Surprised myself actually. Thank goodness I’d gone up from 7.5mg, that 0.5mg made a real difference.

Will stick at 8 for a few weeks before attempting a new, slower, taper.

Many thanks all 😊Nextoneplease xx

[DorsetLady PMRGCAuk volunteer in reply to Nextoneplease]

Good to hear the extra helped- hope your daughter is okay …

[Nextoneplease in reply to DorsetLady]

Thank you DL X

[Nextoneplease in reply to DorsetLady]

she’s still quite unwell and having tests but at least not in A&E x

[DorsetLady PMRGCAuk volunteer in reply to Nextoneplease]

Hope she soon improves stressful for you-so do keep an eye on yourself

[PMRpro Ambassador in reply to Nextoneplease]

Which is progress!!!!!