What to do if going up 5mg in a flare didnt work?

[PMRLondon]

I have been on pred since 2015. At my lowest at 3.5 mg. No medical input since COVID as my GP just lets me get on with it.

I've been on 5mg for about a year trying to reduce but always failing. I thought I would have a good try over the summer to use the dead slow method to get to 4.5. When I got to alternate days my PMR aches came back and huge fatigue. I upped to 10 mg for 8 days as per your advice and felt better but not 100% as I still had trouble walking, but I was worried at being high for so long so I reduced back to 5mg yesterday and today and feel awful. Should I go up again to 10?

I have to admit I stupidly had a vaccination for travel four days ago . Could this have affected it?

I would really appreciate advice....should I go back up, or see if the pains go away at 5mg which has been my dose for a long time.

Thanks

[MiniSpec]

As to going back up to 10mg, yes, I would definitely increase the dosage and stay there for three days. After that try reducing by 1mg per day till you're back at 5mg and see how you get on rather than dropping straight to 5mg from 10mg in one go.

Some other things come to mind.

Firstly you've just had a vaccination for something in order to travel. So your stress levels are obviously high. This in itself is enough to tip the balance in your body so that the PMR symptoms flare up.

Secondly, you say you've been tapering by taking different levels of Pred on alternate days. This doesn't seem to be the best way to reduce your Pred dosage. Instead break tablets into halves or even quarters (as I do currently) in order to reduce at a slower rate.

The thing is that our bodies don't like change. So keep the amount of change to an absolute minimum.

I've had PMR since October 2009, and been on Pred since July 2010. When I've tried to reduce my dosage I've found that I need to keep the amount of change to around 10% or less.

So trying to go from 5mg to 4.5mg, I would break a 1mg tablet into four using a pill cutter, then drop from 5mg to 4.75mg and stay there for at least two months to let my body adjust, before reducing to 4.5mg.

Thirdly, you may have to accept that your body needs a certain level of Pred, and trying to reduce is just going to make your life miserable. After all, it's your life, and if you have the means to make it enjoyable rather than a misery, then do whatever's necessary to ensure that you can enjoy your life.

It's not a race to zero, and many people on this forum have found that they have reached their lower limit and have to accept that they cannot reduce any further. You may find that you have a lower limit of 5mg and have to stay at that level in order to retain any quality of life.

Best of luck with whatever you choose, but don't suffer just because you think you should. You aren't hurting anyone else by taking Pred, and indeed you are helping others by not increasing your own pain and suffering.

[PMRLondon in reply to MiniSpec]

Thanks that is so helpful. Especially the cutting onto quarters. I have never tried that! Also giving me 'permission' to go up again.👍

[Sharitone]

Personally, I would take as much as it takes within the limit of 10mg for a short while, but I can't help feeling that as things have changed and you have not had any medical input for a long time, then maybe your GP should take an interest.

As MiniSpec says, decreasing by 0.25mg can be a safer way to go, while still letting you feel like you're making progress. Some brands of pred, particularly the convex ones, are difficult to cut in quarters, and you can achieve the 0.25mg by cutting a 2.5mg tablet in half.

[PMRLondon in reply to Sharitone]

Thanks, a brilliant way to get to 1.25 👍🙂