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Follow the tapering programme or experiment a little?
Hi folks. Just casting opinions here. I first posted about a month ago after PMR diagnosis, aged 58. I did the quick taper down from 20mg of Pred down to 10mg and thankfully I remained pain free. So I feel blessed in that respect. The rheumatologist now wants me to stay on 10mg until the end of the year. I was like 'really!??'
Of course I will most likley follow that plan but if I'm still pain free on 10mg in 6 weeks I know I will be tempted to try and knock it down to 9.5 or 9 just to test the water. Any thoughts? I know that rushing this horrible condition is not viewed as a good plan....
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I agree, that seems excessive, my doctor tapered mine pretty quickly until 5mg and then 1mg down per month. I went with two weeks and when I started feeling symptoms at 3.5 I raised it to 4 and did well. You have to listen to your own body, just my opinion.
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4 ReactionsI started at 25mg but had to do a fast taper because of SMM and I was good until I started getting under 10mg. I've started kevzara and I'm using LDN as a bridge. I'm currently at 1.5mg prednisone and feeling the PMR some and hoping the kevzara picks up the slack soon.
Hi @martyn, I think tapering can be different for everyone. I really like the discussion started by Mike @dadcue - How to Slowly and Safely Taper Off Prednisone but ... no set rules.: https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/.
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4 ReactionsI think getting off prednisone is as soon as practicable is the goal but there is a happy medium. As long as you feel fine and your labs are good there is no reason to be on prednisone for any length of time. Consult with your doctor and hopefully you can both be on the same wavelength.
Best to you!
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4 Reactions@johnbishop Thanks , I will have a read through that..
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2 ReactionsMartyn, it's time to do a bit of tweaking preferably with your doc onboard. 3.5 months at 10 mg is way too long considering that you're 58 and an active cyclist. In my case, I've had to direct my own tapering schedule and I've learned a lot from my own body's response that my doc has no clue about. He lacks any understanding of PMR. He's never heard about Kevzara. Be proactive but not overly aggressive! And as you've heard in this forum everyone's PMR journey is unique!
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5 ReactionsFWIW, I met with my rheumy yesterday; I started pred in June, and have established my lowest effective dose at about 11 mg. He also said that he was in no hurry to taper, and that sitting at 11 mg for six months or so was okay before starting a steroid-sparing medication. Though he did mention that if I wanted to test the water by dropping down occasionally was fine.
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7 Reactions@dave923
I'm not sure I would stay with a doctor that has no clue about PMR, prednisone tapering or kevzara.
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1 ReactionYou might ask your rheumy why the greater than 90 days at 10mg and what is the happy path taper plan if you don't have any pain on the way down. Then what is the plan if you do have pain. I know my endo says 10mg is a low dose. I'm currently at 7mg and since I have been at this for 7 years and recently Dx with GCA, I'm in no rush. I was in a rush the first couple of times I tapered. I could taper successfully to zero. Then within 30-60 days the pain was back full force. Not a good experience.
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