I’ve upped the Pred, reduced back down but the pains are back today!

[Tiggy70]

Hi, I posted 16 days ago because I was concerned I was having a flare after trying a reduction from 9.5 to 9. I was getting bad aching in both arms and shoulders which had gone on for over 3 weeks. As per recommendations I upped the Pred to 14mg and stayed there for a week. The aching gradually improved over that week until it stopped. I then had 2 days at 12mg, two days at 10mg and today I’ve taken 9.5 (the last dose at which I was comfortable). This afternoon I’ve had all the aching come back again. Paracetamol hasn’t really helped. I don’t know where to go from here.? Do people get withdrawal symptoms when dropping back down again? Do I stay on 9.5 mg and see if it improves? If it doesn’t improve what do I do? Could it be something else which is masked by the higher Pred?

Sorry for all the questions but this is a new scenario for me. When dealing with flares in the past I’ve always felt ok when dropping back down. I’m feeling pretty miserable and don’t know what to do next, Thanks, Tiggy70🌸

[PMRpro Ambassador]

It may be that you have a "real" flare in the sense the disease activity has increased for some reason - it does sometimes. Had you been ill/had a vaccine/stressed just before the aching arms appeared 3 weeks ago?

[Tiggy70 in reply to PMRpro]

I was on holiday when it started so not unduly stressed. I had a doctors appointment on my return to check out breast pain and then was put on the 2 week wait at the breast cancer clinic. The outcome was all good but I was obviously anxious. After much soul searching and indecision I had a Pfizer Covid booster last Wednesday. Gp advised me not to have it, NHS said otherwise. I had a sore arm for a couple of days but otherwise felt ok. What happens if it’s a ‘real’ flare? I’ve noticed that I’m waking regularly around 5.00am feeling weird. Is this IL-6? I experienced this feeling for a while when first diagnosed with PMR. Thanks.

[PMRpro Ambassador in reply to Tiggy70]

Since it started a few weeks ago - I'd blame the stress. It can have a massive effect on the immune system and when my husband was ill and later dying I needed more pred to keep on an even keel physically, Never underestimate it.

[Tiggy70 in reply to PMRpro]

I will try to reduce my stress levels. I’ve been thinking about trying some talking therapy or CBT. What do you suggest I do about my Pred dose? My Rheumatologist is adamant that I don’t increase my dose so I’m reluctant to talk to him. My GP always says you are under the Rheumatology dept. and won’t advise me!!

[PMRpro Ambassador in reply to Tiggy70]

You need ENOUGH pred to manage the symptoms. If you need more, you need more. OR the rheumy must find an alternative diagnosis that fits and has a specific treatment plan.

Is your rheumy aware of this paper?

pubmed.ncbi.nlm.nih.gov/368...

which I and top PMR researchers think is probably the most important publication about PMR in years.

[Tiggy70 in reply to PMRpro]

Thank you so much for your advice. As always prompt and succinct. I’ll give myself a few more days at 9.5mg then if I’m still suffering I’ll contact Rheumatology. Let’s hope Rheumatologists take heed of the recent publication!

[DorsetLady PMRGCAuk volunteer in reply to Tiggy70]

When dealing with a flare - after the initial higher dose we usually suggest dropping down to just above the last dose you were at…. so had it been me I would have stayed at 10mg for a month before restarting taper.

You may find a return to 10mg is enough.. but do make sure you stay on it long enough to know..a week is certainly not enough, 2 is pushing it,.. 3 is better, 4 is best..

[Tiggy70 in reply to DorsetLady]

Thanks. I got a bit confused. I thought after the increase I could drop back down to where I was last comfortable. I’ll add the half mg tomorrow to go to 10mg and stay there for 4 weeks 🤞🤞