New recruit.

Thanks for the info, did you have any side effects over the the three years?

Yes - I had hair loss, and weight gain - fatigue and the "moon" face.  The hair returned "curly", and the swollen face has gone away.  Still get really tired and I am overweight - but I try to walk every day and it doesn't have to be a long distance - just take a little walk which helps me with strength of the legs and since I love being outdoors, it helps my mood.  I hope you will continue to visit this forum - it is so very informative, and most of the people who write often have personal experiences to share which have helped me immensely.  I use the DSNS method when I step the dose down which I learned here on this  forum - I have had really good luck with that and my decreases have been fairly easy.  The hardest thing I have had to learn is that I really am tired, and that is a big part of PMR - so don't overdo it - it doesn't matter what you used to be able to do - you have to take it easy - getting overly tired, or stressed does not help you get better - it hinders it.  Follow the advice of those on this forum who give it - it will help you. 

I am at the same stage as you, Susan though I was diagnosed less than 3 years. I did have it longer than that but thought it was other conditions as happens with many people. It felt strange at the beginning not managing to do much without feeling fatigued but gradually I have been able to plan and do more. I do know that I cannot do as much as I could before but I guess we all learn to adjust. Sometimes it means taking a long hard look at what's important....not a bad idea. 

I agree with you - it makes it much easier to say "no" when you need to.  I still try to walk daily, but at a much slower rate - and when I am tired, or the time isn't there, I don't feel guilty like I used to.  It does take a long time to diagnose I found - because they seem to look for anything else first.  At least you know what you don't have!

Thanks for sharing that info, just keen on trying alternatives to steroids.

There aren't any alternative to steroids in PMR - and the only alternative to pred in GCA is not yet available in the UK! You may find other things that help a bit, but none wll replace pred.

I'm not exaggerating - many people arrive insisting they will do it without pred and within a short time have realised that whatever the less good sides of pred, it gives them their life back! And if you develop GCA there is no choice - you have to start on a high dose of pred or risk losing your sight. If you have PMR and don't use pred then you do increase the risk of your PMR progressing to GCA where the doses are high and there are side effects. At the sort of doses used for PMR the long term effects really arre minimal or would have happened anyway:

https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

Connie, your Rheumy's a gem!  Mine's this forum and Google.

I was diagnosed with PMR late in October.  I tried lower doses of prednisolone, morning only, but soon ended up on 24 mg, split 17/7, taken at 8 am and pm.  Splitting the dose gave me 24 hours relief instead of just 9 hours, beginning in the late afternoon.

I'm now on a 6/7 split, having briefly reversed the taper by 1 mg on three occasions.  If my dose is a little too low, PMR inflammation begins to show itself, after a few days, as bilateral pain in the outer shoulders.  

Interestingly, I have found that any attempt to reduce the 7 mg evening dose leads to PMR pain from 3 am to 6 pm the next day.  So, beware of reducing the evening dose.  For 3 months, I have been free of PMR symptoms almost all the time. 

I now wonder whether an initial split of, say, 9/9 would have worked just as well.  My early internet searches for PMR advocated just a single dose in the morning, but times are changing.

What great advice, thanks so much!  I will start to pay more attention to the timing of my discomfort.  🤔

It def makes a lot of sense. 

Depends on how long you are taking to process it - but plain pred should be acting in a couple of hours as it is broken down and absorbed directly from the stomach, even food shouldn't extend that time significantly, and pred is immediately active without passing through the liver which obviously also slows things down with prednisone. Gastro-resistant can take up to 5 to 7 hours for some people - which is why you could try taking it before bed to be active in the morning.

Sorry, I lost your last post somehow.

My notion that some need to take prednisolone several hours before PMR pain returns comes from here: 

"A person taking a larger dosage of prednisone will take longer to have it completely eliminated from their system. This is because the larger the dosage, the longer it takes for the drug to be absorbed into the system. Therefore, the metabolism will also be delayed and so will the excretion of the drug. It has also been reported that patients that take prednisone with food tend to have a much slower clearance of the drug. This happens because food delays the absorption of the drug from the gastrointestinal tract (GIT). It can take up to 12 hours for the drug to get absorbed by the GIT in such a case. This results in delayed clearance of the drug from the body."

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