PMRGCAuk
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Reducing 5mg Every 2 Weeks

Hello everyone:

Haven't posted anything in over 10 months. Was diagnosed with PMR August 11, 2016 and was put on 50mg prednisone for 1 week and then went to 20mg. My doctor said I should be on 20mg for a complete year, before I start reducing. I have been pretty good except for the usual side effects. In one week from now, on August 10 I will start reducing. I will be going from 20mg to 15mg, then reducing by 5mg every 14 days until I'm off all together. Looking back at your comments from last year, I know that most of you feel that this is way too fast. My doctor says that he has used this approach with a few other patients and it did work for them.

Wish me luck and I will keep you posted.

Gilles

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Eight weeks to go from 20 to zero after a year on pred? Hope your adrenal function keeps up! Good luck - but if at 5mg you start to feel unwell do keep an eye on it and don't hesitate to call a doctor is you feel worse.

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Thanks for the reply.

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Oh Gilles I would refuse to do such a dramatic drop I just know it would make me ill and I'd end up back where I started. However, it is your call, if you trust this doctor then go ahead. I don't recognise anything that he has done with your dosage so far. Maybe he's a genius? I am struggling away at 7 mgs using the dead slow nearly stop method, definitely got symptoms creeping back or withdrawal. 100% better than when this all began though, as I tend to forget. Good luck!

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Thanks for the reply.

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Thanks for the reply.

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Wow! 50mg starting dose of Pred for 'just' PMR - that's most unusual. Likewise with as much as 20mg for a year. An unusual regime but if it works as he expects and you are feeling "good", then we mustn't knock it. Lots of good luck wishes for the remaining somewhat fast reduction programme, but I echo PMRpro's advice to act swiftly if you start to feel unwell, particularly around the 5mg dose which is when your body will rebel if your adrenal glands have not got up to speed with their cortisol production, having been suppressed by the high dose, long term steroids. Do please come back and let us know how you get on.

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Thanks for the reply.

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It seems to me that the biggest problem with this is that on 20mgs, you are unlikely to have found out the level that your PMR is at- i.e. what would have been the lowest dose that controlled your inflammation- and so, you do not know if the PMR is still there or not. Statistically, it is more likely to be still active as you have not had it that long and that means you are more likley to have a flare as you reduce at this relentless pace.After 5 plus years of it, I still need 10mgs at least ( although I am not typical!)

I wish you good luck on this road to zero, but just be aware that your doctor may be wrong!

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Thanks for the reply.

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There is that paper someone posted about yesterday - 19% of the PMR patients in their retrospective study were off pred in a year wasn't it?

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19% is pretty good odds. Thanks for the positive note.

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It took me 3 years and 5 months to reduce from 20mgs daily to 1mg every 7 days, at which point I gave up altogether. My GP basically said to me, "You have this painful condition, reduce at your own rate, however slow it is." He was happy to prescribe 6 months supply of prednisolone at a time. I was stuck at 5mg for many weeks. You wrote "My doctor says that he has used this approach with a few other patients and it did work for them.", but your doctor doesn't have your condition; his sytem may or may not work for you.

I may or may not be free of PMR. I ache, or at least my legs and knees sometimes ache, but it doesn't feel like a PMR ache. I can't easily stand up from a sitting position, but that's in part due to the length of my legs. (I'm 6' 7" tall.). I have primary lymphoedema in one leg and secondary lymphoedema in the other so wear compression socks / stockings. I suspect my weakness came from 3 drugs, Risedronate, Alendronic Acid, and a new Anticogulant. I'm happy taking warfain now.

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Thanks for the reply

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Should have added I take warfarin to lengthen the odds of getting a stroke as I have persistent atrial fibrillation.

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We are watching with huge interest. Do let us know how it goes.

Best of luck

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Thanks, will keep you psoted

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