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Giant cell arteritis:I’m afraid and would appreciate any advice
Polymyalgia Rheumatica (PMR) | Last Active: 9 hours ago | Replies (43)Comment receiving replies
@kanaazpereira — I have GCA and saw a link somewhere in one of the autoimmune threads about a tapering schedule for prednisone that had a numeric label containing multiple 4s and 5s, like 44554…. I’m trying to get off this steroid and mentioned this approach to my PCP team but no one was familiar with it, so I’m try to track done the info on it. Help?! Thanks for any advice on where to look for this. Sandy
Replies to "@kanaazpereira — I have GCA and saw a link somewhere in one of the autoimmune threads..."
Hi Sandy @brightwood, I used the search feature of Connect and I think the post you may be referring to is by @jeff97 and the response by @megz here - https://connect.mayoclinic.org/comment/1246860/.
The posts are found in a discussion started by @dadcue here:
-- 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/
@brightwood
It isn't too surprising that doctors aren't familiar with this tapering method. There isn't any research that has ever been done to support this tapering method. It is just one of many different ways to taper Prednisone.
I think you are referring to the Dead-Slow-Near-Stop (DSNS) tapering method. I mentioned this method to my rheumatologist once. She appreciated the difficulty that comes with tapering but said I shouldn't make it more complicated than it already is. DSNS is an ultra slow tapering method that doctors dislike but it is popular with some patients mostly in the UK. However, patients in the UK seem to have just as many flares and relapses tapering this way as compared to other ways of tapering. ---just my opinion because of the lack of research.
My PCP gave me some leeway to taper however I wished. When he wrote my prescription for more Prednisone ... he wrote "taper as directed" without specifying any precise way to taper. My doctors were good about prescribing different sizes of tablets. I always had an ample supply of 20s -- 10s -- 5s and most importantly 1 mg tablets.
The way some doctors control how you can taper is by limiting the quantity and size of tablets they are willing to prescribe. Some tapering methods involve a lot of extra work cutting tablets to the right size and keeping track of what dose you take on what day. Doctors generally aren't willing to prescribe Prednisone to facilitate a DSNS taper because it involves too much work for them to prescribe Prednisone this way.
You might want to suggest Actemra (tocilizumab) for the treatment of GCA. There is research that supports Actemra for GCA and it makes it easier to taper off Prednisone for many patients. It is also FDA approved for the treatment of GCA.
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@brightwood Here is a method to finding the taper. Go to top left-hand side of this page. Click on the blue words. This will bring you to a page where you can type in “prednisone taper 4s and 5s.” Click return. This will bring you to a page listing discussions and comments about tapering. Welcome and good luck hunting!