Do you take extra pred in the day ?

[MidlandTriumph]

I do, I'm not managing this well, I used to be and still want to be active. I can manage on about 10mg a day if I am sedentary, but if I am busy from work, or fitness walks I start getting the pain. It starts with a feeling of warmness and stiffness on my back and upper neck - nothing bad just a warm feeling, and I know if I don't take more pred, I am in trouble in for a world of pain.

Is this a bad way to manage it - probably yes, but I don't want to take lots of pred all the time, sometimes when it starts to flare, and I can finally recognise this, I can fix this with another 3 or 4mg and I am fine for the rest of the day, and the next day I can manage on my normal 10mg.

I hate this disease, didn't really believe I had got it at first, but pred always fixes it. I don't want to take the higher doses continually (because of Covid, my GP, and my own personal views, and most importantly a fogged mind) so does this approach work for anyone else ?

Bit of a juggling act at the moment, upping the pred for a day or two works well - although I have some discomfort for the 30 minutes or so before it kicks in, and then I feel great - really warm and mellow no pain - bliss

Your advice would be appreciated

[123-go]

To be blunt, no, you aren't managing this well. Your Prednisolone should be taken in the morning at the correct dose to manage your pain without feeling a need to 'top up' during the day. You say you don't want to take high doses of Pred but you are, in fact, doing that very thing by topping up haphazardly. I understand that things are difficult with the NHS at this time but you have a chronic disease that should be managed properly. You need at least a telephone appointment with your GP as you won't get on top of things using your current system. Pred will fix it for you and being on a higher dose with a sensible, slow taper is the way to go.Alarm bells rang for me when I read "fitness walks". Does this mean fast pacing/pushing yourself hard?

[PMRpro Ambassador]

There is a role for taking pred in the day - if the single morning dose doesn't last the full 24 hours it makes sense to split the dose, usually 2/3 in the morning and the rest at some point in the day to carry the aniinflammatory effect over to when the next dose is due.

I don't know anyone who has managed their PMR like you and however you want to look at it you ARE taking a higher dose but not evenly and many people find that when they end up yoyoing their dose because they haven't got it quite right or are reducing in too big steps and missing the "right" dose it become increasingly difficult to reduce the next time.

Covid isn't really an excuse - the problem is the pred history not the future. And steroids are used to treat it. GP - not his pain. You - well, that's another matter.

I suppose it comes down to how often you are doing this - you really shouldn't be using pred as a painkiller and you may end up getting in a mess. But I suspect you also need to learn a bit about acceptance of being where you are and having a chronic autoimmune disorder.

[DorsetLady PMRGCAuk volunteer]

You have answered your own question.....it is a bad way to manage your illness.

You need to take Pred regularly - and chopping and changing doses on an almost daily basis is doing neither you nor your illness any good whatsoever.

I appreciate you have been mismanaged in the past, and with lack of proper medical support, but now YOU need to get a grip of your illness in a sensible manner.

“Managing” on 10mg doesn’t sound very satisfactory to start with...perhaps you should initially try 12.5mg on a daily basis and that may help the slightly more active days.....see more below

The idea is to take enough Pred to cover normal activities and that includes work and walks - and do you mean walking for general fitness or more energetic “power” walks?

I know it’s difficult to adjust your life to PMR especially if the medical backup/knowledge is not great....and you were very active before.....but it isn’t a ten minute wonder, it’s not going to gone in a few months, so you need to work out the best way to deal with it to provide as normal as life as you can achieve.

Not sure if I gave you this link before - but please do read it, particularly the pacing, exercise and acceptance comments -

healthunlocked.com/pmrgcauk...

[SnazzyD]

Hello. Pred isn’t “fixing” anything I’m afraid, it is just reducing the inflammation being produced by an ongoing autoimmune condition. The fixing comes from adjusting your life to allow the body to cope and wait for it to burn out. This isn’t something you catch and knock it on the head and move on. This is your body in acute distress which requires attention and self care. This condition does not get better by powering on through as if nothing is wrong and actually you can end up in trouble by overworking the muscles and ligaments because this condition makes them more fragile. Pred also causes muscle loss especially above 10mg. Although we are always banging on about how good Pred is, you still don’t want to be racking up ever higher accumulated doses for no good reason other than refusing to give up life as you know it. You say you don’t want loads of Pred but you may end up having loads because of a cycle of over doing it, taking extra Pred to put the fire out, only to do the same again. I do understand what it’s like. My GCA ( what PMR can turn into or it can come on its own) blew up over 48 hours when I was 54, very fit, working and was a general action woman. That’s was on the Friday and by Monday I was on 60mg Pred. It does get better but you need to allow it and then build up again.