What to expect on 3mg/day pred, and monthly tapering...

[PixiePMR]

I've been on various doses of Pred since Sept 2021, and diagnosed with PMR Mar22.

I'm currently tapering Pred by 1mg/month (at 3mg and two weeks in).

My consultant wants me off the steroids (and Sulfadiazine).

January cortisol 9am test was 600 (consultant said "satisfactory")

As I "ween" I'm getting stiffness in outer thighs, and when I sit for a while, getting up is "fun" (and a little painful).

My question is, do I just push through as it's to be expected that this will happen? Perhaps the pain will start to regulate/subside?

I'm reluctant to up the Pred as I'm so close close to getting drug free. Pre PMR I was massively into fitness, and am determined to get this part of my life back. Plus, is the menopause also a factor in all this?

Is this a case of "wood for trees"?

[DorsetLady PMRGCAuk volunteer]

Hi,

You may be one of the lucky ones and get off Pred quite quickly, but don’t bank on it…although many doctors think, and much of the official guidance states it only last 2 years…it can and does last a long longer.

The fact that your PMR is fighting back indicates there is plenty of life left in it - and by pushing through it, it is likely to get worse rather than better.

Maybe have a read through this - and get a more realistic view of PMR -

healthunlocked.com/pmrgcauk...

…and why is your Rheumy so hell bent in getting you off the Pred?

Although have a look at this re adrenals -

healthunlocked.com/pmrgcauk...

You will get back to previous fitness levels - but not whilst the PMR is still as active as it is….

[yogabonnie]

Dont rush it here. I did rushed from 3 down to 1.5 and flared and added another year. just take it slow!! at 3 you can get back a lot of your strength and fitness! Good luck!!

[piglette]

If you have pain don’t tough it out, PMR is cunning and will get the upper hand.

[PMRpro Ambassador]

Pred cures nothing - it is a management strategy to manage the ongoing creation of inflammation so long as the underlying cause of PMR is active. The signs you are experiencing could be due to poor adrenal function - though the cortisol result suggests that is less likely. But even 1mg of pred is enough to keep things under wraps - but relentlessly heading for zero may result in a flare of the symptoms. I won't call it a relapse, because there is a chance the PMR is still going on.

[ifeelold in reply to PMRpro]

does anyone ever actually know what the underlying cause of PMR is? How can we tell? Its so strange to have your body attack you.

[PMRpro Ambassador in reply to ifeelold]

It's a derangement of the immune system that means the immune system is unable to recognise your body as self and for some reason it decides to attack various body tissue by mistake. But WHY or HOW it happens isn't known. If they knew that they could work on a cure ...

[Bcol]

Hi Pixie, I would have to agree with the other comments. It does sound as if the inflammation is still active and if you try to rush the drive to get off Pred then it's highly possible you will have go back to a much higher dose to get things under control again. At the very least, I would suggest that you don't continue tapering whist still getting the pain.

[calibriel]

I’ve been plateaued at 3/2.5 for a year now - ever since having a small flare after almost coming off. I’m taking it very, very slowly; almost getting down to 2.5 then upping again to 3 when things get tough - for any reason: when I moved house, when the weather was ridiculously hot, when I had a heavy cold, etc, etc . As a result, my dosage and side effects are gradually reducing, and my symptoms are under control. Maybe that approach would work for you. Admittedly I’ve been “flying solo” - with the invaluable help of this forum - for most of that time, mainly because I changed GP surgeries because of the move, but fortunately when I have spoken to them they seemed sympathetic.

[cranberryt]

If you push to reduce too quickly, you will likely end up on higher doses for even longer. 1mg/month drops at that low of a dose is likely far too much. If the stiffness and pain on returning, increase by 1/2mg or 1mg until the pain goes away. Stay at that dose for another month. Then try 1/2mg reductions. It could take another year or years to get off if the pmr is not fully in remission. While 3 may seem like the end is in sight, it very well may not be.

[ifeelold]

I felt like i was reading my story, same timeline, same dates, same age. I got down to 3.5 mg last October. i was rushing it and was determined to be off in a year... WRONG. I had a major flare up. Had to go all the way up to 22mg for the pain to stop.. but i'll never forget that day i woke up pain free after a year of denial and always being in minimal pain. my muscle tone is gone, my face is swollen (moon face). black and brown blotches all over my face, arms and legs, and my skin is scared for life from the fragility of it and having a new puppy. I hate this medication but have learned to live with it. I am currently at 7mg and will taper to 6.5 in two more weeks. my goal now is to take enough prednisone so i can enjoy my life..

this forum is so helpful. staying on is not only informative but is lifts my spirit when i'm feeling depressed about it because some one here has had it much worse than me.

Best of luck in your tapering. i look forward to it myself. maybe it will work this time. no pain at all at 7mg.