Unwelcome Relapse

[caftan]

PMR. As you will know from one of my recent posts I had managed to get down to 4 and a half mg after more than 3 years on Steroids starting at 15 mg. I stayed at that level for 3 months, feeling OK and thinking that it might be time to drop down to 4mg. But then almost overnight I began to feel some of the old symptoms, ie shoulder pain returning and I was not generally feeling very well. Very low energy levels especially. I decided to up the pred by one or two mg per day for a few days which didn't seem to help at all so I upped it to 8mg but there was still no change. PMR pro advised going up to 10mg (I think) for a week or so to see if that would do the trick. I did try it but still to no avail. I then had a telephone consultation with my GP and she advised going back up to 15mg to "nip it in the bud". I had a blood test shortly after this and she phoned me back again after 10 days to discuss the results. Results came back 'normal' but I was feeling no better. She was confused by this and said that going up to 15mg for 10 days should have made a difference. She said she would phone a 'specialist' at my local hospital and call me back. This she did. She said he was as puzzled as she was that I was not feeling any better on 15mg. I thinks she suspects there might be something else going on (her words). So I have an appointment for yet another blood test in the new year and she has advised me to drop back down to 10mg (after being on 15mg) since the phone call on Friday 23rd December. So I have now been on 15mg for 18 days altogether and will drop down to 10mg from tomorrow. I am dreading it. I will have a face to face appointment with her on 9th January for an unrelated problem. Any advice would be much appreciated. She has also mentioned that I might see a 'specialist'. I have no idea what kind of specialist she means. Should I ask maybe?

[PMRpro Ambassador]

I imagine she means a rheumatologist. Whatever it is, the first thought had to be it was the original PMR raising its head again. If so, the measures you have tried, would have worked better. However - PMR isn't the disease, it is the name given to a set of symptoms and there are various underlying causes. One possibility is LVV or GCA - large vessel vasculitis and giant cell arteritis, both can appear at any time after presenting as "just" PMR originally, There are other conditions that can cause the PMR appearance. But they are difficult to identify for a GP ad she is doing the right thing, presumably the rheumy is guiding her in the meantime.

Why are you dreading the drop to 10mg? It might be a bit uncomfortable but you could soften it by doing a few days at 12.5mg on the way.

[blueisgreen]

I don't know much but I was having a similar problem. I was at 1mg, and then started hurting all over my body. I went up to 5mg with no results, and then 10 for a few days with no results. Doctor determinedI have fibromyalgia in addition to PMR. I see rheumy next week to confirm.

[MiloCollie]

You’re in good hands by the sounds of it. Don’t worry about dropping from 15mg. Worry also isn’t a good friend to PMR so try and relax 🤞😜