My wife has been on Prednisone almost 2 years. Her first rheumy tried to have her taper all the way down to no steroids after only 7 months just because her numbers were good. She started with a much more reasonable 2nd rheumy. For 6 months she was on 12.5mg and was almost pain free. She was lowered to 12.0 for a month. Still doing well, she was lowered to 11.0. Two weeks later, the pains that she experienced 2 years ago all came back. The rheumy had told my wife if the symptoms came back for a prolonged period of time, to go back to the dose she was on when she was feeling pain free.
My wife has gone back to 12mg and it has been 3 days, but the symptoms are still there. We are hopeful that the increase will soon take effect.
In summary, it seems obvious that 2 years of being on steroids is probably not enough for her to consider tapering. We know that many of you on this forum have told us that you have been on much more than 2 years, so it looks like we will be waiting a bit longer before any more tapering efforts.
Joe
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navejasjoe
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Hi Joe, when your wife’s symptoms have stabilised, get a good pill cutter from the pharmacy and suggest she tries to decrease by 0.5 a month, stopping at the first sign of trouble.
Having same problem with "weaning" off the prednisone and starting over again with severe pain again is intolerable.
I had a similar issue going to 11 to 10mg. After 2 weeks full PMR pain. Went back to 11mg no change. I did an extra 5mg for 1 day and went back to 11mg and they seemed better. I stayed at 11mg for 4 weeks minimum when all symptoms dropped. I did 0.5mg drop thereafter but the only thing that has worked, with occasional 1 day increase to help if pain appear after 2 to 3 weeks, is the dead slow nearly stop taper. I started drop from 9 to 8mg 6 days ago and so far so good. Hope your wife feels better soon.
What you have to remember - and most doctors don’t say this either because they don’t know or are frightened to - PMR can last anything from 2 years to 6 years. Average seems to be about 4.5 yrs!
So no point in try to get to zero if the illness is still active , which it is another thing so doctors don’t ‘get”, they think as soon as you are on Pred it’s gone - it’s not! All the Pred does is control the inflammation caused by the PMR, it does nothing for the PMR per se.
So initially you are given bigger doses of Pred to get the built up inflammation under control - then the patient has to reduce slowly to find the level actually needed on a day to day basis. That varies from person to person, and circumstances!
You may find your wife needs an extra mg or 2 above the 12mg to get back to being stable. I see you say she was almost pain free on 12.5mg - to me that indicates it was bordering on only just enough. The drop to 12mg may have been okay, but that obviously wasn’t going to be long term, so the next drop to 11mg was the final straw.
As your wife seems a bit more sensitive than some, then the suggestion of 0.5mg tapers and/or a slower tapering plan might help her.
is a discussion of the results of a recent study which found not only PMR-doses do NOT cause any side effects, other than cataracts, which wouldn't be found in an age-matched population of non-pred takers. And that PMR lasts about 6 years for a lot of people, more for some. GCA also tends to take more like 4 to 5 years to burn out - and ittakes longer when doctors try to force reductions and flares happen.
Hello PMRPro and welcome back. I hope your holiday was enjoyable. I am always glad to be home, best part of a change.
Is it possible for this really useful discussion to be pinned? It seems relevant to so many people’s worrys. I find it hard to articulate - that’s just me.
I have had PMR for over 3 years and have had little success reducing my Prednisone even using the DSNS method so I can fully relate to your wife. My symptoms return and even increase after dropping 2-3 mgs from 20 mgs dose ) My symptoms have never changed and I have been examined and tested to see if I have something other than PMR but it is determined I do not. I think my absorption of my Prednisone dose may be less than average. I took Methotrexate injections last year then quit. I think it may have been a premature decision at the time so I started them again 2 months ago being so frustrated with not being able to reduce my Prednisone. I am almost at 19 mgs using DSNS method and so far so good but I won't be excited till I can reach at least the 15mg mark without going back into my original symptoms. I wouldn't be concerned about being at say 10 mgs Prednisone no matter how long that took but 20 mg day does concern me some. There must be others that have this problem but I read of very few that can't seem to reduce their Pred when at this level. The Methotrxate actually has made me feel some better. My RA Dr works with me on this. Her original push to reduce me from 15 mg which was my starting dose and which worked at the time is what made me then have to go to 20 to get my inflammation under control and there I've been stuck! It is a so frustrating. I wish your wife the best in her journey.
There is someone who used to post on the Patient forum who had similar problems tapering, even from a fairly high starting dose. In the end she decided she would simply spend far longer than most people do at each level so it might take a year to drop by the amount that others could possibly do in half or a third the time. The thing is, this seems to have been working for her. I'm a bit stunned that she's still at as high a dose as she is, but all things are relative, and the point is she has been steadily, albeit to my mind painfully slowly, been reducing her dose, without flares (at least none that she's disclosed to us). Some people need more pred because they don't absorb it as fully as others. Some people are extremely sensitive to minute reductions, as you've found. Finding a method which works for you, plus doing all the other things you can to get yourself healthy (diet, exercise, rest and stress avoidance) will get you there in the end!
I really appreciate you taking the time to tell me about this person. I do read the patient forum too but have never ran across someone like me. Most can do a slow reduction with a fair measure of success and even if they have to increase a bit they can continue on within a short period of time. I know Methotrexate doesn't help everyone but on the week of my first injection this time around I felt poorly for 5 days then had a few days where I felt like I didn't have PMR. It was a wonderful break from it! That break didn't last but overall I think the MTX makes me randomly feel better becauses it suppresses my immune system along with what the Prednisone does. I've probably actually needed a bit higher does than 20 of the Pred but I just didn't want to increase any more. Now as I continue with my dosage drop we will see what happens. Like you say it's all relative to the person. I just don't fall among the average. Thanks again for your input.
I don't think she's been posting much lately. I remembered her because I think she must have started pred around the same time as I did and I noticed how different our needs were.
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