Just seen a rheumatologist for the first time, having been diagnosed with PMR in early January this year. Went from 15mg pred to 12.5mg by March. She has put me down instantly to 10mg, which she says I should be on after six months, then reduce by 1mg every six weeks. This I think, is very good news - only been down to 10 mg.for three days now but so far so good! Also told me to come off the Calcichew as I take Vitamin D high strength. The two could affect my heart.
Just need the wise people here to confirm they agree with her, but there was no nonsense and I was out of her rooms in ten minutes!
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Silver-Babe
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Did she talk you through what to do if your symptoms start returning? Possibly heralding a flare. It seems a bit perfunctory to me but it would be wonderful if it works. I also stopped the calcium and continued with daily vit D and vit K. I was getting bladder irritation.
Yes, she did talk me through that possibility, to up the dose quietly. But the point was that my GP was guessing what I should now be on I felt and she agreed. So I do feel comforted that with her expertise and confidence is all I can say, I left pretty happy.
Were you not told to try to reduce further after a month to 6 weeks on 12,5mg? A fairly normal approach would be 4-6 weeks at 15, 4-6 weeks at 12.5mg and then to 10mg. If it works that has you at a good dose in 3 months - if it doesn't work you may need to go back to the last dose and go 1mg at a time but that isn't the end of the world.You still need calcium - depending on your diet. Dietary calcium is best but if you don't have enough, you may still need some supplement.
Well, I'm now on 10mg and in six weeks, to go down to 9 and a further six weeks, 8 and so on.......... Obviously I will have to go back if things don't work out. I'm worried about what you say that I need calcium but her opinion was the Vitamin D and K2 were were all I need? And above all, the once a week Alendronic Acid, which she said was vital.
If you are being made to take AA then your calcium intake MUST be high enough so it works. So you do need to have a look at your diet to be sure that is OK. VitD and K2 are important - but you must have enough calcium. I take high dose vit D and no calcium supplement now but initially I had to have a calcium supplement because I was supposed to cut the dairy according to the dietician! They can't have it all ways.
I do disagree with her view of AA - I have never taken it and my bone density has barely changed in 12 years! You should have a dexascan to identify a baseline bone density - but while pred might cause loss of bone density it isn't inevitable and there are several of us on the forum who still have bone density of young women despite having taken a fair bit of pred!
Yes, to go up by 1 - am waiting for her letter. But I know it's early days yet, just needed to tell you clever people, for whom incidentally, she seems to have high respect for this forum!
Thanks dancer! That's very encouraging. So what are you on now? 1mg? How long did that take? I'm still only six months into PMR so know I have a long way to go. But these GPs just seem to guess what and when to reduce our pred. don't they? Glad I went to the rheumatologist.
Hello Silver-Babe. Like Dancer I reduced easily from 20 - 17.5 - 15 - 12.5 - 10 at monthly intervals. Now having trouble going from 10 to 9. In my monthly phone chat with my very helpful GP, we agreed I would try 9.5 and then maybe alternate 9.5 and 9. He has left it to me to sort, but no pressure. I'm happy with that.Just to reiterate everyone's advice, if it's not working, slow down. Glad it has gone so well so far, 😊
When I saw a consultant he advised dropping by 0.5 mg once I got to 10. If you find 1 mg drop too much this may be easier. I seem to be one of the unlucky ones whose PMR lasts longer so I have had to go really slowly.
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