P M Rheumatica

[Winnie311]

asking for advice please?

I started with PMR last October, as soon as I was prescribed 15 ml Prednisolone I felt like I had been given a magic wand. The medication has gradually been reduced & I am now down to 6mg. I have had no trouble ever since. About 4 days ago, I guessed I had pulled a muscle in my shoulder because of pain & discomfort. Eventually the pain went down my arm & up my neck. I have tried gentle yoga movement. Just an hour ago, suddenly the pain is in both sides of my neck, the back of my head, in my throat &across both shoulders & into the top of my back. Only now am I wondering if it could be a PMR flare up? I didn’t even think of this before because I only had pain/discomfort on one side. It is Saturday & here (in England) the doctors surgery is closed for the weekend, so I cannot ask their advise.

[DorsetLady PMRGCAuk volunteer]

Hi,

unfortunately certainly sounds like a flare- see this for our suggestion of how to deal with it…

healthunlocked.com/pmrgcauk...

.. and don’t let ir rumble on, the sooner you can get things under control the better.

You may not think it, but you have got down to 6mg quite quickly, so maybe slow up on the reducing from now on… longer on each dose, and maybe consider only 0.5mg at a time once you get to 5mg. Plain white uncoated tablets can be cut.

You are also at the levels where your adrenals need to think about working again… so all round, the slower the better.

[Winnie311 in reply to DorsetLady]

Oh many thanks for your advice Dorset Lady! I will read your suggestion straight away 😘

[Winnie311 in reply to DorsetLady]

I would be more advice needed please.

I have been back on 10 milligrams of Pred now for 11 days, yet I am still in pain on right of my neck, shoulder, arm & going down the back shoulder blade. In the very beginning in Oct/Nov when I very first took the pred , it was like using a magic wand & straight away took away the pain. So I am puzzled now at why this time I am with pain after 11 days? Is this unusual?

[DorsetLady PMRGCAuk volunteer in reply to Winnie311]

That is disappointing-perhaps you need to up it slightly -say to 12.5mg -and see if that makes any difference. Once you get the 14 days [in total] then come back to us and if it hasn’t made a difference we’ll need to rethink.

[Winnie311 in reply to DorsetLady]

Thank you so much for your quick reply, you truly are so helpful

[PMRpro Ambassador in reply to Winnie311]

If it is just one sided - it may not be directly PMR but myofascial pain syndrome which is due to trigger spots of inflamed and hardened musce fibres which can make the muscle tight and even go into spasm. In this case - are the shoulder muscles hard? They can trap or irritate nerves and cause pain to radiate to your arm and into the shoulder blade.

[Winnie311 in reply to PMRpro]

Ahh you may be right PMRpro! In fact my husband was even suggesting this.

Infact this is the same pain I had before the definite flare up started. The pain of the flare up did go after taking more pred but still left me with this original pain (which started about 5 days before the flare up.

Thank you so very much for this information

[PMRpro Ambassador]

You can call 111 and ask for advice from the OOH doctors.

It does sound like a flare - it isn't uncommon for one side to be worse than the other - is it your dominant arm where it started?

DL has offered the same advice I would - treat it as a flare and don't return to 6mg after sorting it.

On average, it takes half of patients 15 months to get from 15 to 5mg - you are way ahead of that curve and half of patients take considerably longer than that. Fast tapers are fine until you hit the buffers - you aren't heading relentlessly to zero, you are seeking the lowest effective dose and you can't tell in advance where that will lie, higher or lower. It doesn't mean you won't get lower - just not yet. At this stage, 7mg should still be seen as an acceptably low dose so the GP shouldn't be discouraging and you shouldn't be discouraged.

[Winnie311 in reply to PMRpro]

dear PMRpro, I did message you straight away to thank you but I cannot see it anywhere on here 🤷‍♀️ , perhaps I didn’t hit a send key or something?

So after reading Dorset Ladies advice, I also took yours & rang 111. They were very helpful. A doctor called back & told me to take 5 extra milligrams of prednisone now & in the morning to go back onto taking 10 milligrams. Probably for the next 4 weeks & then slowly go down. I will speak to my doctor tomorrow & hopefully she will say only for the next 2 weeks. In the advice that Dorset Lady told me to read, it says no longer than 2 weeks & then I could go back to my lower dose, otherwise any longer would mean I would have to start again at reducing only by one (or less) each month.

[DorsetLady PMRGCAuk volunteer in reply to Winnie311]

Good -and agree hopefully the flare protocol will be enough.

Don’t worry about reply not going through-does happen especially if on iPhone or iPad. If you’re on laptop/PC you usually get a reminder about leaving the page. We’ve all done it.

[PMRpro Ambassador in reply to Winnie311]

We think the flare protocol saves the longer tapering if you are worried about being back on more pred. Though far better to be on a bit more pred for a bit longer than let in an established flare. Glad 111 stood up to the plate - that's what they are for.