Short update

[Griggser]

Saw my rheumy yesterday and thought I'd put up a quick update. Been suffering quite a bit of pain since reducing from 12mg of pred down to 10 over the last 4 months. I stupidly just carried on putting up with the discomfort/pain. So after a good chat the rheumy recommended going back up to 12mg and continue with the Hydroxychloroquine. I also told him that I was very stiff in the mornings so he suggested taking my dose in the evenings. Well last night I took 10mg around 9 pm meaning I had a double dose that day as I had taken 10mg at 8am. Anyway when I woke this morning I was almost pain free, a bit like the day after I took my first dose 3 years ago😀 So tonight I'll take the 12mg and see how things go. I guess the lesson learnt is to trust my own judgement on when I can reduce and if the pain returns not be afraid to up it again. I just seem to be one of those people who are hoping to struggle to get off pred but at least I feel better👍

[Slowdown]

Hi Griggser, reading back through your posts I see you used to split your dose - I do the same, at the moment 8mg at 9am and 3mg at 9pm which doesn't seem to affect my sleep too much but deals with the inflammation release around 4.30am. I'm on gastro-resistant pred but also have 1mgs plain which I can cut and add to a reducing dose (also gives a little boost earlier).

Hope your new regime works, good luck!

[SheffieldJane]

That sounds great! I am not so much stiff as feeling ill in the morning, as if I've got a virus. It improves as I get moving. I wonder if we sometimes interpret the same symptom in a different way?

[PMRpro Ambassador in reply to SheffieldJane]

I think everyone experiences PMR differently - and it DOES lead to confusion for doctors who then use even other words to express it...

[Hindags in reply to PMRpro]

SheffieldJane and PMRPro, thank you for voicing something I've been wondering about for a while. I wonder, for instance, whether the weak/Wobblies I experience are my version of the fatigue others report.

My instinct is to move through those episodes, to just keep moving though I'm tempted to rest also.

Confuses me and I'm the one feeling it. I can see how it might confuse a medical professional who is thinking with a whole different perspective and a very different internal checklist.

[PMRpro Ambassador in reply to Hindags]

When I hit the brick wall of fatigue it is definitely a weak and wobbly moment (or rather more usually!)! I have to retreat to bed if that is an option. I have sat desperately wishing I could find the energy to get there at times. It happened 2/3 of the way down a short ski run once - which was a major warning to know my limits and not push them and to make sure I was somewhere I could bale out relatively easily!!!!!!!

[PMRpro Ambassador]

I really do think that when you are able to accept that maybe you are on this journey for longer than the average and stop fighting to get to a lower dose it adds a lot of positives. I take Lodotra, which is designed to be taken at night - and I know that many people feel it allows them to manage on a lower dose overall.

Good luck with the new approach.

[Griggser in reply to PMRpro]

I think you've you've hit on the head with your comment "when you are able to accept". I'm pleased to say that I woke this morning without the pain I normally have. So hopefully the increased pred is the key😀

[PMRpro Ambassador in reply to Griggser]

No pain is ALWAYS good!

[GOOD_GRIEF]

There really is no point in taking less of the medication needed to treat the level of disease you have. Pointless suffering is pointless. Additionally, the inflammation is causing damage all on it's own. The better control you have over it, the better you will feel every day and in the days to come when, eventually, PMR burns itself out.

There's plenty of advice available on the forum regarding preventing side effects and taking the edge off the worst symptoms. There are also recommendations for exercise routines, nutrition etal.

And we're all pulling for each other. So stop by often, even if it's only for a comforting "pat on the head". We're here for ya.