If I’m really stressed, and know it’s going to get worse before it gets better, should I change my dosage plan?

[calibriel]

That’s it really. For context, PMR was diagnosed in June 2020 and by January this year I was doing really well. I had just reduced to 1mg every other day (my GP’s programme - I hadn’t seen the advice from this group then) when I had what could have been a flare, although I now think it was more likely to have been at least partly due to arthritis. Whatever it was, I consulted a doctor and upped the dose to 5mg which helped a lot, reduced after a week to 4mg. I have since reduced - slowly - to 3mg, and just started the DS&NS programme to reduce further. Feeling fine so far. The stress that I mentioned has been building over the last few months and is coming from the fact that we are about to move house, complicated by the fact that my partner is unable to help - he’s under investigation for what might be early dementia: something else to worry about - so I’m doing everything for both of us. I’m a naturally anxious person, not helped I think by the steroids, and also have high blood pressure. So, my question is quite simple, as above: I know the stress is going to get a lot higher in the immediate future as we approach the actual move. Should I carry on my existing reduction plan, stay on 3mg and hope that keeps things under control, or consider a temporary increase as if it was a sick day? Thank you

[DorsetLady PMRGCAuk volunteer]

As you are less than 2 years in, you’ve done very well to get as low as you have, but maybe now is the time to put a hold on reducing - certainly until you have moved and things have settled.

As has been said numerous times you are not reducing relentlessly to zero, you are trying to taper and find the lowest dose that controls your symptoms, and as you’ve found you’ve already overshot that once.

I would stay at 3mg until life plateaus, and then, and only provided you feel okay, start the DSNS and only 0.5mg a time.

Good luck with move and partner’s dementia investigation.

[calibriel in reply to DorsetLady]

Thank you

[PMRpro Ambassador]

From what you say - I think you were probably at too low a dose for YOU and YOUR disease. You aren't heading relentlessly to zero, you are identifying the lowest dose that works well for you - and you found it and then continued down the road. Prof Dasgupta told us some time ago that he keeps patients at 2-3mg longer term as it reduces the risk of relapses. A steady low dose is far better for you than yoyoing the dose to cope - whether it is the PMR bubbling up or the adrenal insufficiency.

I too have had a couple of years doing everything, I didn't move house, wouldn't have been a on option, but I did need more pred to manage the PMR, never mind the adrenal function. Although I am on a much higher dose than you, I still have a blunted adrenal response when under stress and it makes me feel awful for the rest of the day after a phone call or appointment to sort out paperwork. I think you would be better to accept a bit higher dose for now until things have settled down - it is possible that the stress and unfamiliar surroundings will also affect your husband if it is a form of dementia he has. Coping for two is hard - been there.

And I would tell anyone - DON'T reduce during a house move or any other stressful life event!

[calibriel in reply to PMRpro]

Thank you