Increase - now decrease

[Burroughs123]

I was diagnosed in March 2020, started on 15mg and have slowly decreased dosage. Over the past few months I have noticed that a few weeks into a drop in dose (I taper by 0.5mg after 6-7 weeks) I get some aches and twinges in my arms/shoulders. I have been very lucky that until recently I have remained relatively pain free. I decided that with my last taper from 8.5 to 8mg I would hang at 8mg for a while and get Christmas and a quick trip abroad under my belt before attempting another taper to 7.5mg. Over Christmas my shoulder/arm/under arm aches increased and became sharper. They were aggravated by travelling in the car (arm position?) and reminded me of when I had a possible trapped nerve issue last year (this was diagnosed by my GP although Dr Mackie has suggested this might have been a PMR flare). The only difference from that episode being that the aches have been in both arms this time. The trapped nerve issue only appeared in my right arm but boy was it painful! I took the decision to increase to 15mg the day before flying (7 hour flight, followed by a long car journey sitting in one position) and then have stuck to that dose for the duration of my hols. The aches and twinges wore off after a few days - there was a bit of heaviness and pins and needles style aching - but things definitely improved whilst I was abroad. I flew back home yesterday and have gone back to 10mg this morning. So my increased 15mg dose was for 1 week. Have I done the right thing? I’m petrified that I am going to get slammed with a major flare now I have dropped again. Did I increase my dose too high and for too long? Could I have dropped back to lower - say 9 or 8.5mg - rather than 10mg? Questions, questions… I realise that as I was starting to have issues at 8mg so returning to a higher, more comfortable dose would be better. I am going to let my GP and Rheumy Dr Mackie know what I have done, but I’m keen to get your immediate thoughts and suggestions.

[PMRpro Ambassador]

The 15mg for a week and back to 10mg is what we'd probably have said. Though 13mg might have been enough - but who knows?

Do you mean that this happens at every reduction? Strange - although what MAY be happening is that at the time of reduction it is marginally too low but it takes a while for the inflammation to build up enough to cause symptoms.

My theory is that the activity of the underlying a/i disorder cycles - it would form a sine wave if you plotted on a graph, falling off to a low point and then rising again to a peak and falling again. But every peak is a bit lower than the last one so over time it is always reducing. If you are reducing on the falling phase, you may get to a dose that a few weeks later isn't quite enough to manage the activity at its peak. Wait a bit and it falls again so things settle down again. But you were skating on thin ice the last time. and it was worse over xmas. The stress and extra activity of the time of year probably didn't help.

I'd try the 9mg if you are feeling good just now - all that can happen is you get some niggles and if they get worse it is a warning you are close to a flare and to go back, wait a bit and then try again.

[Burroughs123 in reply to PMRpro]

As always, your advice is invaluable. Thank you so much. I will drop down from 10mg to 9mg tomorrow and wait to see what happens from there for a few days. If things get niggly I will take it up again.

[DorsetLady PMRGCAuk volunteer]

PMRpro has given good advice, , but this link may also help - - healthunlocked.com/pmrgcauk...

[Burroughs123 in reply to DorsetLady]

Thank you. It really does help. You guys are such a godsend.I thought I was on top of everything and taking it so carefully with a very slow taper. Gotta learn to stop counting chickens!!

[DorsetLady PMRGCAuk volunteer in reply to Burroughs123]

ahh yes...them thar chickens do cause issues 🤔