I’d appreciate any advice on reducing prednisone. I seem to recall reading a 10% reduction every 2 to 4 weeks worked for some. Are there any other formulas that work, and any differences in speed for the newly afflicted?
As some of you know, in my case I was hammered almost flat with PMR and only began on pred about 6 weeks ago. I started on 15mg and increased to 20mg. Aside from a shoulder issue that may be unrelated I’m feeling almost human.
How can I most safely taper down to the least amount of pred? Is it possible I may be able wean myself entirely? Are there cases where a single attack comes and goes without reoccurrence? And of primary importance, are there any early warning signs of an impending flare, and if so, how do you promptly smother it?
Michael
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MikeVanBC
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How can I most safely taper down to the least amount of pred?
By listening to your body and not watching the calendar... and as you say approximately no more than 10% of your current dose, and preferably nearer the 4 week mark than 2 weeks. Two weeks is not always enough to know if current dose is sufficient, before you reduce again...
Is it possible I may be able wean myself entirely?
Yes, but only when the PMR is in remission, and as stated no-one can tell you when that will be.
Are there cases where a single attack comes and goes without reoccurrence?
If you have over-exerted yourself on your current dose which normally is enough to control your illness and your normal activity level.
Are there any early warning signs of an impending flare, and if so, how do you promptly smother it?
Usually a return of your original symptoms gradually getting worse... see this post for dealing with a flare, and telling the difference between a flare and steroid withdrawal which sometimes confuses new patients -
In general I would say you have to accept your illness, and the fact that it will not be rushed, no matter how much you want it gone, and be back to "normal. ".
.whatever that may be.
This is your new normal for the time being, but you can still have a good quality of life, if you make small adjustments to how you live, and probably more importantly - your expectations for the next few years.
There is some info in the FAQs about tapering but DL has covered most things I think!
Just remember that you are NEVER reducing relentlessly to zero - you are tapering to titrate the dose to find the lowest effective dose for YOU. That means that you need to proceed carefully with small steps down and not too often. It isn't something you can do effectively according to a timetable - you need to adjust for you and your PMR and at the start you are likely to need much more than you will later so it is no use rushing down the dose on the assumption you have plenty of leeway. There are no warning signs until you are already too low.
I will say that I’ve flared 6 or 7 times in 4 years. Each flare started with what I call “niggles” that are basically physical warning signs that something is up. For me it’s usually increased stiffness, scalp tenderness, soreness at the back, left side of my neck, and knee pain. If these symptoms get worsen over the course of 5-7 days, I’m headed into a flare. If they lessen, it’s pred withdrawal from my taper. If the pain is more severe with a quick onset, but resolves within about 48 hours, it’s likely that I overdid it with physical activity (DOMS).
Of note, I stayed at 20mg for 6 weeks before tapering. My GP wanted to ensure the inflammation was addressed as it had built up 6 months before diagnosis. As for your taper, you’ve got the basic guidelines and as DL says, listen to your body. My CRP was consistent with my symptoms so monthly bloodwork also helped with tapering.
Big learning curve in the beginning….you’ll get there.
When first diagnosed, I stayed at my initial dose of 15mg for 2 months, then 12.5mg for another 2 months. After that, I tapered at around 1mg/month. Even so, I flared in month 14 when I was at 4mg pred and had to increase to 10mg and subsequently experienced more flares along the way!
Like PMRCanada, my CRP and ESR always confirmed my symptoms, so if your levels were raised at diagnosis, they are a useful tool to confirm or deny a flare. Not all people get raised blood markers.
Agree wholeheartedly with DL "listen to your body"! I did that in 2019, when new symptoms pointed to GCA joining in!
I finished with pred a month ago, having had 2 years on Tocilizumab for the GCA and have just started Methotrexate, hopefully for just a year to buy a bit of time and see if I might be in remission.....!
Thanks very much for sharing Rugger. I hope you don’t mind a few more questions! As you reduced, how quickly did you recognize a flare? It appears not early enough to bump up pred to the previous level, but that it was necessary to jump from 4 to 10 the first time? Did it take long to suppress each flare, and were any of them as painful as when you were first afflicted? And are you also referring to a support group like this in Canada?
PMRCanada is a member of this forum from Canada, jinasc on here was a member of a Canadian group the best part of 20 years ago but it folded for some reason. There was also a US forum I found well over 10 years ago but it had server problems, possibly hacked. An attempt was made a few years ago to set up a US forum parallel to this one but it needs a critical mass of members to work - and a core of expert patients with the requisite background knowledge - and it never took off. Two other forums here in the UK, pre-existing this one, are no longer active for PMR/GCA and this is probably one of the foremost English language PMR/GCA forums in the world judging by the membership we have!
I wholeheartedly agree on the people in this exceptional group. I signed on as a member a couple of days ago, specifically because of all the wonderfully positive support and assistance. You guys & gals are amazing!
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