I've been off Pred for 3 months and pain has returned
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I have been lurking here for the last number of months. I had reduced my pred to zero just before Christmas with no difficulty at all. In April, I started feeling pain in my groin--both legs--and in my right shoulder as well as in my knees. It didn't feel like the pain I had when PMR first started. My question--the Prednisone I was taking could be masking pains that come with aging, so how do I know whether the pain I feel now is PRM pain or aches and pains that come with time. My doctor ordered a blood test , and CRP and SED rates are within normal limits. I have been taking 5 mg of pred, since I had some left over, and that has taken care of any pain that I have.If it's PMR pain, I will take the pred, if it isn't, I will try to learn to live with the aches and pains of aging. I really don't want to take the pred, since I was diagnosed with osteoporosis last year.
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nick67069 rhea28447
Edited
It is not uncommon to relapse, especially if you had only couple of years of treatment. Blood test may give you an answer, if you have raised markers. Keep in mind that even if you don't have inflammation markers up, you still may have relapse, because 20% of people have normal blood test with PMR.
After few days on 5mg your accumulated inflammation has been taken care of, so you may wanna try lower dose.
Anhaga rhea28447
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Nick's suggestion is great. If you were able to taper to zero with no problems it's very likely that you will not need a particularly large dose to manage this relapse. Taper carefully, though and not too soon as you want to make sure, as you did the first time, that the inflammation is properly controlled.
Very low dose pred should have no measureable effect on bone density, especially if you have been doing what you can to maintain and improve your bone health. I have spent several years at between 2-2.5 mg pred before finally being able to taper to zero. I was on pred for five years but I think only during the initial year was my dose high enough to affect bone density.
Certainly I have not found that a low dose helped pain from osteoarthritis, although the initial dose did make a difference. It does seem likely your current discomfort is PMR.
EileenH rhea28447
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I have just posted this on another thread:
http://www.pmrgca.co.uk/content/pmrgcauk-week
Professor Bhaskar Dasgupta said in his webinar last week that he keeps many patients at 2-3mg longterm - and gets really good results with this very low dose with no adverse effects,
Three months is a really common time for PMR to reappear after stopping pred - many people are well managed on even as little as 1mg on alternate days but without any pred they develop pain as the inflammation builds up. But the markers often don't rise for a long time - they lag well behind symptoms. If you tapered slowly to zero then the chances are you need a very low dose. Now things are better if it were me I would go to 2mg and see if that is enough. Then taper again very very slowly - stay on each dose for a couple of months and go in 1/2mg steps. If you get to 1mg OK, then try 1/2mg - and if that is fine, try for alternate days. But by my reckoning, that should be at least 6 months into the future!
Anhaga rhea28447
Edited
I can second Eileen's suggestion about the very slow taper. This is where the name "dead slow nearly stop" becomes an accurate description. I had been between 2-2.5 for a couple of years. Last year, around May or June, I started to taper by doing each step of the DSNS method twice, reducing by only 1/2 mg. As in, one day new dose, six days old dose, one day new dose, six days old dose; one day new dose, five days old dose, one day new dose, five days old dose. And so on until I had done one day old dose six days new dose twice. Tapering this way takes roughly three months per step. It took me until early June this year to be fully at zero pred, having tapered the last three months with zero as new dose, 1/2 mg old dose. I continue to be okay. As Eileen says I may feel untoward effects in a couple of months. On the other hand, because I tapered from 1 mg to zero over the space of six months I'm more confident that at least for now PMR is in remission.
Because you are currently at 5 mg you won't need to use the "double taper" idea at this stage, just the normal dead slow taper, although it can be a good idea to wait a week or so at the new dose before moving on to the next step, depending how you are feeling and what else is going on in your life, etc. I really think that anyone who is at 2 or 3 mg pred is at nearly zero risk of side effects.