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How to Slowly and Safely Taper Off Prednisone but ... no set rules.
The following link addresses prednisone withdrawal symptoms and adrenal insufficiency. There is a nice video that explains how prednisone replaces our natural cortisol -- a hormone that our adrenals produce.
https://www.verywellhealth.com/does-prednisone-tapering-minimize-withdrawal-190242
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The following is a more in depth discussion about the role of cortisol in the body. Credit goes to Australia for the following information.
https://www.healthdirect.gov.au/the-role-of-cortisol-in-the-body#:~:text=Key%20facts,much%20or%20too%20little%20cortisol.
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Welcome @christineb23, It sounds like you may be tapering too fast. Each of us are different. You might find this discussion started by @dadcue helpful, it has some good references that provide and explanation:
-- 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/
My PMR experience with 2 occurrences 6 years apart starting at 20 mg prednisone for each - the first time took 3 and half years to taper off with the last six months going back and forth between 1 and 1/2 mg prednisone until I could stop taking it with little to no pain. Second time it took me 1 and half years to taper off.
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2 ReactionsThis video is also helpful. I like how she explains it.
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4 ReactionsYour rheumatologist can answer this better than anyone but going back up a little bit is a fine answer. You can always taper back down again , and next time taper at a slower rate. like 1mg per month. My rheumatologist agave me two choices the methotrexate or something like that and prednisone. They both will work he said. I picked the prednisone and am at 4mg. My inflammation blood work is finally in the normal range after about 6 months of this. My plan is to taper at 1mg per month for the rest as long as all goes well. I also started at 15mg. My non medical understanding is it just takes a bit of time for the PMR to burn itself out. And when you get down to 5mg and less a slow taper is key to success.
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5 Reactions"My non medical understanding is it just takes a bit of time for the PMR to burn itself out. And when you get down to 5mg and less a slow taper is key to success."
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True in the majority of cases. However, sometimes PMR doesn't burn itself out and sometimes people take 5 mg of prednisone for the rest of their life.
If a person has trouble at approximately 7 mg and always seem to flare at lower doses of prednisone their adrenal function might be the problem. It is hard to ignore withdrawal symptoms and adrenal suppression as a side effect of long term prednisone use. However, a slow taper is still the key to success.
Otherwise a biologic like Kevzara or some other medication that doesn't suppress adrenal function might be helpful. Lifelong prednisone is hard on the body and not a good outcome according to many medical professionals.
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1 ReactionThank you for the reply. im very new to this. Very unsure and unsettled about the whole thing
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2 ReactionsHere is another good video.
I wonder if it would be possible to compile a bunch of good videos under various topics.
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5 ReactionsI started with 15 mg daily in 2020. Tried to go down a couple of times. This time when I went to 2 mg I got severe jaw pain and headache. I even have visible vessels on my temple. I am afraid of gca and have to find out what I should do now
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2 ReactionsAre you seeing a rheumatologist? You might ask them, if you are a candidate for Actemra. If you do a search in this forum, you'll find a lot of discussions on the positive benefits from those of us who get it. I've only been getting it for 3 months and there is a huge improvement in my health. Others have been taking it for longer.
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2 ReactionsIf it was me, I would be in the ER. Save your vision. Do not wait.
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5 ReactionsThere was a point where I was worried about GCA as well. Fortunately, I did not have it but every health care professional I spoke with emphasized the need to be seen ASAP to preserve vision. Don't delay!!
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4 Reactions