Any Tips For Tapering Off Prednisone?

Posted by hopeinal @hopeinal, Aug 26, 2024

This is my third attempt to taper off of Prednisone or at least down to about 4 mg since my rheumatologist said that I wouldn't have all of these gruesome side effects at that dose and could stay on it for life if necessary. The thing is that as soon as I get down to 7 mg I start to flare. Today is my 3rd day on 7 mg and my shoulders and lower back are so stiff and painful it hurts to move.

I'm really discouraged. Have followed the taper schedule my rheumie gave me and stayed at each dose for 2 weeks before dropping down another mg. Any tips or advice on how to taper without having a flare would be much appreciated.

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I have been tapering since early December and I have reduced by 1mg every 4 weeks. I have not had flare ups & I am now on 7mg, down from 25mg. Take it slowly.
Good luck

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I think the usual recommendation is to taper down after a month, not two weeks. That’s too fast. And if you find it helps, taper 1/2 mg at a time. The key is: Slow and Steady. Good luck.

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I am going to try Kevzara
I’ve been on prednisone for almost 2 years, took methotrexate last 3 months to help taper the prednisone
I got down to 4 mg and my esr jumped way high
I can self inject kevzara every 2 weeks , after 52 weeks I have an analysis of treatment
Has anyone tried kevzara and what’s the result for you?
Did you feel normal while taking it?

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@karo89135

OMG, another person with teeth pain! My rheumatologist said bluntly, "go see a dentist". Blurry vision too...am tapering down prednisone, at 4 mg now from max 60 in 2018 and multiple flares.. Pain in shoulder muscles, buttocks and neck pains all increasing but will tough it out. 3 biological had side effects.
I'm curious what doctors say about your teeth pain?
Insidious is an understatement. Wish you luck! 15 to 12.5 seems too rapid. I'm doing 1mg per month.

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So, I went to the Rheumatologist and she wants me to go on methotrexate and actemra to wean me off of the prednisone. I am really leery of both and feel very discouraged and depressed. I feel trapped as there seems no easy way out of this. I don't know if I can do a slow taper on my own, or if I don't have a choice about using the chemo drugs. I will keep researching doing this without adding new drugs, as it seems the side effects are not worth it. Praying for a miracle!

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@grandmap

So, I went to the Rheumatologist and she wants me to go on methotrexate and actemra to wean me off of the prednisone. I am really leery of both and feel very discouraged and depressed. I feel trapped as there seems no easy way out of this. I don't know if I can do a slow taper on my own, or if I don't have a choice about using the chemo drugs. I will keep researching doing this without adding new drugs, as it seems the side effects are not worth it. Praying for a miracle!

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Hi grandma,
I really understand your feelings. I had methotrexate for a few months and have a few nodules in my hand and one in a lung. Tried Kevzara but allergic reaction with a rash and increased skin keratosis. Then went to Actemra. Headaches but sed rate went to zero! Stopped everything. Down to 4mg prednisone, down 1mg per month. The hand
and jaw pain is returning. I
am so uncomfortable in the mornings. Rheumatologist says it's fibromyalgia. I totally disagree. Fairly sure I have/had GCA. Was treated for it 8 years ago and didn't know it could return. Never had options for biopsy or biological, had to beg for something to help me. Will see what the CT scan shows. No one here in this forum has commented on nodules. I was negative for RA and Lupus. Bottom line, choose carefully but educate yourself the best you can. I'm not in a flare, pushing through the pain and really trying to become prednisone free. Wishing you some relief!

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@karo89135

Hi grandma,
I really understand your feelings. I had methotrexate for a few months and have a few nodules in my hand and one in a lung. Tried Kevzara but allergic reaction with a rash and increased skin keratosis. Then went to Actemra. Headaches but sed rate went to zero! Stopped everything. Down to 4mg prednisone, down 1mg per month. The hand
and jaw pain is returning. I
am so uncomfortable in the mornings. Rheumatologist says it's fibromyalgia. I totally disagree. Fairly sure I have/had GCA. Was treated for it 8 years ago and didn't know it could return. Never had options for biopsy or biological, had to beg for something to help me. Will see what the CT scan shows. No one here in this forum has commented on nodules. I was negative for RA and Lupus. Bottom line, choose carefully but educate yourself the best you can. I'm not in a flare, pushing through the pain and really trying to become prednisone free. Wishing you some relief!

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So sorry you are going through this. We really do have to advocate for ourselves, don't we? We are the only ones who know how we feel and how are bodies respond to drugs, etc. I hope and pray you can find some relief. I also have fibromyalgia and the pain is not the same, no matter what your rheumatologist says. Stay on top of that jaw pain because GCA is a relapsing disease. If it gets too bad, skip the rheumatologist and go to the ER. I will pray for you! Hugs!

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@grandmap

So sorry you are going through this. We really do have to advocate for ourselves, don't we? We are the only ones who know how we feel and how are bodies respond to drugs, etc. I hope and pray you can find some relief. I also have fibromyalgia and the pain is not the same, no matter what your rheumatologist says. Stay on top of that jaw pain because GCA is a relapsing disease. If it gets too bad, skip the rheumatologist and go to the ER. I will pray for you! Hugs!

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You are so right. ER would start 60mg or more of prednisone. Been there once and gained 30 pounds. Sed rate doesn't rise either with fibro. We advocate for ourselves but I feel like the doctor, not the patient. Hoping for relief for you too. Curious about methotrexate and actemra results for you. Something did help me for a while...pray for you too!

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