I have posted a few times and have been very impatient with how long it was taking to be pain free especially at night.
I was diagnosed in December and put on 15mg of prednisolone, which had. Been reduced to 7.5mg by April. Pain had increased by middle of April so towards the end of the month contacted GP and medication increased to 10mg. After 2 weeks there was no real improvement, so thanks to this forum and advice given to other I upped my medication to original 15mg for 4days and have dropped back to 12.5 for the last 3 days. I am keeping my fingers crossed, but I have had no pain in arms the last 2 nights and just some discomfort in back of thighs occasionally.
I’ m hoping to drop back to 10mg this weekend then slowly every 4 to 6 weeks take it down by 1 mg.
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lynda1955
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That’s good news. In the absence of a prescribed plan I would slow that down given that you were diagnosed only 6 months ago and have had a flare. Perhaps 0.5mg every 4-6 weeks. That should also make the process of waiting for your adrenal glands to start working again a bit smoother too. Perhaps talk it over with the GP.
Looking at previous posts, you have had a checkered beginning - so I wouldn’t be in any hurry to reduce down from 10mg.
Firstly you need to make sure that is enough - so at least a month at that dose before you even think about reducing - and although you may be okay at 1mg reductions initially I would suggest once you get to 7mg you change to 0.5mg a time.
And TBH it’s no good getting impatient with things… if you are [still] getting pain, that’s your PMR telling you that you aren’t on enough Pred…. not rocket science 😊.
I have posted this before on the Forum, but, in light of your post, I will repeat what I wrote.
With pmr, you will need patience, then more patience, and then, more patience still.
I think you have been given good advice about slowing down. It was implied to me, at diagnosis, that pmr could last two years, maybe longer, and could be chronic. At the end of the day, I was on pred for just under eight years, and there are plenty on the Forum who are still on pred longer than that.
If you try to reduce your pred when you feel any symptoms at all, it is likely to come back and bite!
You may be lucky, and the pmr goes quicker, but don’t count your chickens.
And another voice to add to the pleas for SLOWLY! You cannot rush PMR, it calls the shots and all you do when you push against its constraints is make it worse and harder for yourself. By trying to reduce the dose faster, you cause a flare of syptoms, a return to a higher dose and starting over again. Which slows things down and, in the end, may make the PMR even more resistant.
If you reduce your dose and the PMR pain creeps back, it’s too low a dose. I don’t care if it’s been 5 years or longer, that still applies. Trying to do steps greater than 10% of previous (old) dose and in less than 5 weeks to get to the new dose is begging for a bad time.
Remember this is a disease and you are just managing the inflammation caused by it, you are not “treating” the disease. Your lifestyle can worsen the symptoms, by increasing skeletal muscle inflammation, but ‘you’ aren’t going to impact how long the disease lasts or its level of activity. Once you accept that fact you’ll lower your level of stress. Also, if could monitor and plot the disease activity it isn’t a linear downward slope. There are plateaus and upward slopes as well. Like a roller coaster. You’re trying to match a plot you can’t see and can only estimate based on response to your dose. Making large changes in dose makes that more difficult and doing it too frequent makes it impossible.
Use DL’s 5-7 week simple taper with not more than 10% reduction until you get to 3.0 mg / day when I dropped from 0.50 mg to 0.25 mg steps by cutting the non-enteric coated tablet into quarters. That’s as small of a step as you can go. Don’t be afraid to use a pill cutter to cut the tablets (Don’t Cut Enteric Coated tablets!).
The DL Simple Taper 5-7 weeks should be renamed to 5+ weeks as those extra week extensions are just to give extra time to see if the pain is coming back before trying the next new dose step. In my case if I was going to flare it was on Day 3 of Week 3 and when it happened I immediately made up the difference between the new dose and old dose (in other words, I took more pred “that day” to equal the old dose and stayed there for 1-2 weeks monitoring for pain before trying again, maybe halving the step to be a little more conservative.
Another benefit to the small steps is lowered risk of AD. I was lucky, my disease lasted 2.5 years and I frequently ignored my Rheumy. It’s also been 2.5 years since reaching zero.
Asking forgiveness after is sometimes better than asking permission. If you find a doctor who truly understands this disease and the logic behind what this group promotes, that doctor is a rare gem and if you find one like that be open. Else, be guarded and look out for yourself. I trust those like PMRpro, DorsetLady and a couple others in this group a whole lot more than some doctors, especially with dealing with PMR, if I had also GCA I probably feel the same way regarding it.
Remember the story of the race between the Tortoise and the Hare? Be the Tortoise!
I was similar . I decided to got down by 1/2 mg every 4 weeks you can get a pill cutter from Amazon . I am now dien to 2.5 mg and 3 mg every other day . Slow it down
my main advice would be to drop the dose at snail pace. I started on 10mg in April got down to 2mg by January but then had a flare up so back to 10mg. I then took two years to reduce to zero. Seems a long time but it worked!! Good luck
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