Help on the best way to take Predisione

[Suffolklady]

Hello. I’m new to the forum but found what I have been reading so far very helpful and I don’t feel alone anymore. I have had PMR for 18 months and after having some ups and downs I’m now down to 7mg of Predisione, however I need some advise on how to take this amount. I take the whole dose in one go in the morning should I divide it up through the day or does it not really matter? Any advise I’d be grateful for, thank you.

[PMRpro Ambassador]

The recommended way to take pred is as a single dose in the early morning - it is felt to reduce side effects somewhat, especially the effect on sleep patterns, as well as having the greatest effect on the inflammation created each morning in PMR which is why the syptoms tend to reappear each morning. However - what is important is that the pattern you use works for YOU, not me or the neighbour or his cat. Some people find a single dose does not keep the symptoms suppressed for 24 hours - and split the dose in some way to extend the effect.

If what you are doing is working - why change. If it isn't working - what is wrong?

[Suffolklady in reply to PMRpro]

Yes I’m okay the way I do it but you never know if there’s a better way. I will continue on the same regime thanks for your support

[SheffieldJane]

Hello Suffolklady and welcome to the forum. PMRPro has given you succinct advice. It has worked for me for two years. I am at 7 mgs too and struggling to get lower. There is the added complication of your own Adrenal Glands having to produce Cortisol again. I’m finding that I am quite symptomatic - like flu and exhaustion. How are you?

[Suffolklady in reply to SheffieldJane]

Hello thank you for your welcome. Yes I’m okay but dreading reducing further as it didn’t work out last time for me. Like you I’m struggling to get lower. I read about the Adrenal Glands starting to wake up as you come off Predisione to and going through the stage of struggling especially with tiredness, not feeling well until it starts to produce Cortisol. I also read that some people tried Pantethine as a supplement for this process and had success so I’m trying it. Only on day 4 so it’s hard to determine whether its working. I do know exactly how you feel though.

[Soraya_PMR]

I started to take my pred early hours to avoid the morning stiffness, which worked. However my evenings were correspondingly worse. So now I take half at around midnight (gastric resistant so needs around 4 hours) and the other half when I get up.

(Today the ‘when I get up’ was 12 midday! I can sleep the clock round now I’m off the higher doses <embarrassed lazy face!!> But I do have to go out for the evening, so a lazy morning enables that.)

[Suffolklady in reply to Soraya_PMR]

I find the lower dose the hardest part of my recovery not only do I have the pain but I feel rubbish with it and my tiredness increases.

[Grants148]

Welcome Suffolklady to the forum.lalways take my preds early in the morning,even when l started on 30 mgs.l am down to 3mgs now after nearly two years of tapering. All the best , l hope everything continues to go well for you.

[Suffolklady in reply to Grants148]

Thank you. It’s my second attempt to get on a lower level last October I was down to 5mg but boy did I feel bad and my arm pain returned again, my pain specialist had a word with rhuemalogy department and they suggested to up it again to 10mg, on the reduction again. Here we go again lol

.

[Suffolklady in reply to Grants148]

Thank you for your sound advice it works for me but I thought it might not be the right way to do it to get maximum benefit. I take so many pills mainly for back problems that I don’t know whether I’m coming or going sometimes

[PMRpro Ambassador in reply to Suffolklady]

Has anyone suggested therapeutic massage/mobilisation of trigger points in your back? It isn't just fibromyalgia that has trigger points - some are formed by the same inflammatory substances that cause PMR except they are concentrated in these trigger points.

[Suffolklady in reply to PMRpro]

It could be a good point. In my situation I have had a full back spinal fusion with metal from top to tail so I don’t think massage would be very comfortable for me. I think I blamed my PMR longer than I should have done on my back and sometimes still do with extreme neck pain headaches.

[PMRpro Ambassador in reply to Suffolklady]

No - probably not a good idea. But I bet it hasn't improved the adapability of your back/neck muscles!

[Suffolklady in reply to PMRpro]

No, on predisione the pain goes which is bliss, no nagging headaches and my neck feels better you can’t have everything I really want to come of the drug.

[PMRpro Ambassador in reply to Suffolklady]

I'd rather be pain-free! The side effects can mostly be managed.

[Suffolklady in reply to PMRpro]

Is there an alternative drug?

[PMRpro Ambassador in reply to Suffolklady]

Tocilizumab/Actemra for GCA now - but it isn't going to be widely available for PMR as much as anything because of the price (£12K per year) . But it isn't exactly sweeties either!