Hold off on prednisone reduction for holiday week?

[MisOg50]

Good evening all...

I'm 6 weeks post diagnosis PMR GCA. Prednisone 60mg for 2 weeks then down by 5mg the following weeks. I feel as though I have had a whole body transplant but know it's very early days and have learnt a lot from the forum of what may/will/can lie ahead which for me is reassuring.....if that doesn't sound too odd.

What would be the advice for maintaining 40mg dose for the next week whilst on holiday? I am hoping to swim and walk but not strenuously and I want to enjoy it. Want husband to enjoy it too. Interestingly I have had fleeting reminders of GCA symptoms over the last few days just lasting a few seconds.

[HeronNS]

I think you should avoid a reduction while you are away. Also, be aware you are getting to a level where 5 mg per week may start to be a bit fast for your system to catch up. You need time to adjust as the dose is lowered, even if the actual amount of pred is sufficient to control disease symptoms. You won't want pred withdrawal even when you aren't on holiday.

[MisOg50 in reply to HeronNS]

Thank you HeronNS. I will keep at the current dose for the holiday week.

[PMRpro Ambassador]

I'd stay there - if you are well, don't ever mess with dose while travelling/doing something different. One week is not long in the great scheme of things and reducing 5mg a week is very fast - a few extra days isn't a bad thing.

[MisOg50 in reply to PMRpro]

Thanks PMRpro

Reducing prednisone is something I'm finding hard to understand at the moment. When I saw the rheumatologist in September the plan was 60mg 2 weeks. Reduce by 5mg per week to 20mg. Reduce by 2.5mg per week to 10mg. Subsequent reduction by 1mg per month as per BSR guidelines.

I have 20mg stuck in my head as the point to expect problems. Have looked at the dead slow method and will continue researching. Self management plays a big role here I guess but suppose I'm a bit to early in the PMR GCA process to have a practical understanding.

[PMRpro Ambassador in reply to MisOg50]

The best laid plans of mice and rheumatologists...

A plan is needed to set the framework - but it may not work as every case of GCA and every patient is different. The pred hasn't cured anything, the underlying cause of the inflammation is still there and there is experimental evidence (a London/Southend study) that there is still evidence of inflammation in GCA and other forms of vasculitis after 6 months at high dose pred - above 20mg. It all depends on the activity of the autoimmune component - and to some extent to the amount of pred YOU absorb from the gut which can be from 50% to 90%.

This paper

rcpe.ac.uk/sites/default/fi...

slows the reduction down somewhat from the BSR guidelines - and find they get flares in 1 in 5 patients instead of the more usual 3 in 5. You'll see it is still faster than our Dead slow approach.

It's the 5mg per week your rheumy has suggested that worries me most - a week is not long enough to know it is still enough to manage the disease activity - and it isn't in the BSR guidelines I'm sure. It may take a few weeks for the inflammation to get to the stage you get symptoms again - and as a result you have no idea which dose was already too low. I wouldn't be concerned at the moment - 40mg is a common starting dose as well and there are experts who believe the starting doses are too high, 20mg is enough for most people. It is done to reduce the risk of sight loss - no side effect of high dose pred is worse than THAT so it is acceptable. But to continue at this rate below 30mg/day is pushing it I think. Not least because top experts have said for years that the reduction in pred dose shouldn't be more than 10% of the current dose. 5mg at a time below 30mg is nearly double that.

What is it that you find a problem about understanding reducing?

[Rusty8]

Hi I know how you feel when I first started steroids I felt same as you ,as though I had a new body after years and years of pain but it didn't last long as soon as cut down began so did pains rear there ugly head so I wouldn't advice cutting down for holiday have a reasonably good one

My hubby had died a few months before I was told I had pmr and all I could think of was that I wish he had been here to see change so I can also understand why you mention your hubby

There comes a time when you have got to sit and think about the steroids as they also bring there own problems

I'm in pain now but that is because of spine problems so I know I am going to have to live with them

At moment on 8 mg steroid

I sincerely hope you enjoy your holiday take care

[MisOg50 in reply to Rusty8]

Thanks for your reply Rusty8. Staying at current dosage for holiday. My husband has been so patient over the last few years but when I heard him telling his brother he thought he had turned into my carer I was shocked not just because with hindsight it was true but because it's not only the "sufferer" doing the "suffering". Sometimes hard to remember when locked up with PMR GCA.

I will be reading further about steroids but can see my biggest challenge will come with reducing the dosage.

Thanks for your good wishes

[Caro12line]

Absolutely agree with previous posts. I've been on Pred 22 months now for GCA and if I am travelling or holidaying I maintain the dose I am comfortable with for that time. Don't worry about reducing. As PMRPro says, in the grand scheme of things a week of maintaining dose is nothing. It is far better for you to have and enjoy your holiday with your husband and be able to do all you want. Have a great time and pick up the tapering schedule on your return xx

[MisOg50 in reply to Caro12line]

Hi Caro12line

Yes it seems a good plan. As I have said to PMRpro reducing is something I'm finding hard to understand at the moment with varying views. Will think about it later and enjoy the break. Thanks.

[PMRpro Ambassador in reply to MisOg50]

Just remember that what the patients say and what the doctor theorise can be VERY different! We have the t-shirts!!!!

[30048 in reply to PMRpro]

How do I get a tee shirt ?

[PMRpro Ambassador in reply to 30048]

You have PMR? One day you'll have as much experience as we do! Doctors tend not to have had PMR!