Down to 5 mg of prednisone : Happy New Year Thank... - PMRGCAuk

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Down to 5 mg of prednisone

jensen0518
jensen0518

Happy New Year

Thank everyone for the past help. The following is a little background. In December 2018 diagnosed with PMR. I got to see my rheumatologist in February 2019 he had me taking 30 mg then tapering down. Moving forward May I tapered down to 15 mg then gotten down to 8 mg then had a flare up around July then I was put back to 15 mg. Moving forward I have just tapered down to 5mg and scheduled for blood work on 1/3 and doctor appointment on 1/10

Overall I feel good try to go to the gym everyday to ride bike or elliptical machines or lift weights. I have been tapering every 2 weeks 1 mg so in 2 weeks will go down to 4 mg.

Looking for help you think I should taper down only .5 mg every two weeks or taper down 1 mg every month

Any suggestions or anything I should be aware when tapering below 5 mg by the way I am 58.

Thank you

Jim

17 Replies
oldestnewest

Hello there. Have you been given this taper plan by your doc? Are you completely symptom free? Even if you are and PMR is quiet, this rate of reduction may make you run into trouble if your adrenal function is not catching up. Low function can hit quite suddenly too with deep seated fatigue and shakiness. I know we’re different but just for comparison i tapered 0.5mg per 6-8 weeks and then 12-14 weeks as I got below 3mg. Perhaps your function is bouncing back at the same rate you reduce but I’d be cautious and don’t underestimate how much work the Pred is still doing for you.

jensen0518
jensen0518 in reply to SnazzyD

Yes, the tapering plan was set by my doctor so every 2 weeks I would taper down 1 mg. So far I have been very good I actually ran in a 5 k race in October

I see the doctor on 1/10

Blood work on 1/3 I am looking forward to seeing if my C Reactive Protein is normal

DorsetLady
DorsetLadyPMRGCAuk volunteer

Well done so far, despite your blip in July.

But can I suggest that you now taper even slower - at such low levels it's very easy to go below the kevel you actually need, and many have found that even such a small amount as 0.5mg can be the difference between success and failure.

Obviously as you get lower, the percentage you are reducing gets bigger - remembering mantra “do not reduce more than 10%of existing dose”. At 10mg, 1mg is 10% reduction - but at 5mg it’s 20%.

Your PMR is only just over one year old, so still some time to run - so I would do either 0,5mg per month or 1mg every 2 months - the former probably the favoured options. That makes it less likely to go below required dose, and also helps the adrenals.

If not doing so already, try a slow taper such as this - there are other available - healthunlocked.com/pmrgcauk...

You’ve done well so far, don’t spoil it now by trying to rush yourself off the Pred.

Thank you when I see the doctor on 1/10 I will run this by him

You have helped so much

Thank you

I really appreciate your advice

PMRpro
PMRproAmbassador

Below 5mg you should be considering 1/2mg per month - in tapering no step down should be more than 10% of the current dose where possible - 1/2mg will be more than 10% as you get lower. You need more than 2 weeks to be sure the new dose is still enough to manage the inflammation. And you are now looking for adrenal function to start to wake up and the slower you reduce the more successful that is likely to be as well as causing fewer insufficiency effects.

Remember that the lower you get, the nearer you are likely to be to the dose you are looking for: the lowest dose that manages the symptoms as well as the starting dose did. You may be lucky, you may be in the 1 in 5 who can get off pred in a year or so, but they do tend to be at a higher risk of a relapse. 80% of patients need more than a year.

jensen0518
jensen0518 in reply to PMRpro

Thank you

I really appreciate all your advice

You’ve done so well but I would say go slower from now as the others have said. From my experience I learned the hard way so don’t undo the good you’ve done so far. Good luck!

jensen0518
jensen0518 in reply to Janet57

Thank you

Looking forward to discuss with doctor but going slow seems to be the best way to go

Well done! I’d suggest going really slowly! I’m at 2mg now. I got a bit over ambitious and was down to 1mg when I saw my rheumy in November. I had to admit I was struggling a bit and he said go back to 2 or even 3 and stay there for a couple of months. It’s a small maintenance dose with very little significance in terms of side effects. No point in risking a flare.

I’m also delighted that I’m reducing the MTX as well.

Best of luck, hope all goes well for you.

jensen0518
jensen0518 in reply to GerriMc

Thank you

I think I will be going slow

Honestly I don’t know, I saw a rheumatologist a few days ago who was horrified I’d been on preds for nearly two years, insisted I come off them, start taking alendronic acid and have steroid injections in my shoulder! He thought I didn’t have PMR, Blimey! What next I wonder! This is a weird experience indeed!

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to motherofspaniels2

What does he think you have then? No good saying you don't havePMR, unless he says what you do have!

Dunno! I have asthma sleep apnoea hypothyroidism and I was treated for breast cancer mid 2017.,,,,,take your pick! Oh and put on 4 stone taking preds!

Not what you’d call one of nature’s athletes! Just grateful to have a pulse!

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to motherofspaniels2

And a sense of humour ....you’ll definitely need that 🤣😂🤣.

Oh well, the rheumatologist rang me a few days later and said stop tapering, keep on 10mg and come in for a load more tests, X-rays etc! bizarre. My doc ordered a Dxa scan and smirked! looking forward to results!

I commend you for having such success with your tapering. My wife was diagnosed 3+ years ago with PMR, was started on 15mg and her rheumy had her tapering down to 2mg 7 months later and that was disastrous. All her symptoms were back. She went to her GP who put her back up to 12mg. She is now seeing a new rheumy who has her tapering much more gradually. She is down toggling between 9 and 10mg, and she is doing much better, although she has occasional flare ups. Her rheumy is targeting my wife to be at 7.5 by year's end. We'll see.

Joe

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