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Tapering off of Prednisone

Posted by e @epvb, Mar 27, 2017

I am currently on 20 mg prednisone after tapering down from 40 mg which I was on for 2 weeks. I have been directed to taper down again next week to 10 mg. I am experiencing terrible headaches lasting days at a time as well as neck pain and insomnia. Has anyone found any relief or remedies for headache/neck pain? Thank you.

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marymckeith | @marymckeith | Mar 18 3:20pm

Should I restart 5 mg prednisone after being off it for 6 months? Severe shoulder pain. Readers opinions.

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stonewheel | @stonewheel | Mar 18 6:42pm
In reply to @tjw17 "I am tapering very slowly. Originally at 50mg to combat Lupus. Then gradual reduction to 10..." + (show)
Profile picture for tjw17 @tjw17

I am tapering very slowly. Originally at 50mg to combat Lupus. Then gradual reduction to 10 over several months. Now I'm going down 1mg every week for final phase out.
I am finding it so hard - agony!. Depression is so deep, mood states all over the place, body can't work, sleep disturbances in the night, falling asleep during the day.
What I want to know is, how do I know if my adrenal is adjusting? Does it have to wait until I'm completely off them, or is it beginning to change now. Can someone tell me the chemistry side of it? When does the adrenal kick in?

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@tjw17
Hi. Here is a pic (graph) from the Kevzara website regarding PMR. (Don’t be confused because it has RA Site in red at the top. That is to select the RA Site. This is showing the PMR Site.)

It shows a 14 week taper to zero, starting at 15mg/day, having taken Kevzara for 38 weeks (in combination with Prednisone) prior to beginning the final taper.

Left column is weeks.
At the top is:
CS dose mg/day.
(Corticosteroid-Prednisone.)

Basically, it says to taper 2mg per week until you reach 10mg/day.
At 10mg/day, reduce by
1 mg/ per week.
For 10 weeks.

Better yet, her is a link to that page on the Kevxara website.
https://www.kevzara.com/hcp/pmr/efficacy/study-design
Good luck and best wishes.
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stonewheel | @stonewheel | Mar 19 9:27am
In reply to @stonewheel "@tjw17 Hi. Here is a pic (graph) from the Kevzara website regarding PMR. (Don’t be confused..." + (show)
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@tjw17
Hi. Here is a pic (graph) from the Kevzara website regarding PMR. (Don’t be confused because it has RA Site in red at the top. That is to select the RA Site. This is showing the PMR Site.)

It shows a 14 week taper to zero, starting at 15mg/day, having taken Kevzara for 38 weeks (in combination with Prednisone) prior to beginning the final taper.

Left column is weeks.
At the top is:
CS dose mg/day.
(Corticosteroid-Prednisone.)

Basically, it says to taper 2mg per week until you reach 10mg/day.
At 10mg/day, reduce by
1 mg/ per week.
For 10 weeks.

Better yet, her is a link to that page on the Kevxara website.
https://www.kevzara.com/hcp/pmr/efficacy/study-design
Good luck and best wishes.

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I forgot to add that the success rate of the PMR participants with this plan was:
28.3% using Kevzara in the 14 week window.
10.8% not using Kevzara in the 52 week window.

The link was to the Healthcare Providers Only pages in the Kevzara website.
IMO, it is/was an extreemly aggressive.

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stonewheel | @stonewheel | Mar 22 8:41am
In reply to @cyndiefromnc "Here's my question. I'm down to 2.5. It's going good. I don't want to ruin it...." + (show)
Profile picture for cyndiefromnc @cyndiefromnc

Here's my question. I'm down to 2.5. It's going good. I don't want to ruin it. My question is, can being over taxed emotionsally or physically bring on a relapse?
I thought this might have been due to a virus or even a flu or covid shot. (I did get a lower dose of the flu this past fall and nothing changed. I probably won't risk another covid shot.) However, I've seen comments about PMR coming on during stressful situations. Is that really possible?

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Starting 7.5mg Pdzn today. Down from 2 weeks at 8.5mg. Week nine on Kevzara.

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tjw17 | @tjw17 | Mar 22 6:13pm
In reply to @stonewheel "@tjw17 Hi. Here is a pic (graph) from the Kevzara website regarding PMR. (Don’t be confused..." + (show)
Profile picture for stonewheel @stonewheel

@tjw17
Hi. Here is a pic (graph) from the Kevzara website regarding PMR. (Don’t be confused because it has RA Site in red at the top. That is to select the RA Site. This is showing the PMR Site.)

It shows a 14 week taper to zero, starting at 15mg/day, having taken Kevzara for 38 weeks (in combination with Prednisone) prior to beginning the final taper.

Left column is weeks.
At the top is:
CS dose mg/day.
(Corticosteroid-Prednisone.)

Basically, it says to taper 2mg per week until you reach 10mg/day.
At 10mg/day, reduce by
1 mg/ per week.
For 10 weeks.

Better yet, her is a link to that page on the Kevxara website.
https://www.kevzara.com/hcp/pmr/efficacy/study-design
Good luck and best wishes.

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@stonewheel thanks!

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sassysaveur | @sassysaveur | Jun 17 8:40am
In reply to @rosemarya "@epvb, I also want to welcome you to Mayo Connect. As of Dec.9, 2016, I am..." + (show)
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@epvb, I also want to welcome you to Mayo Connect. As of Dec.9, 2016, I am successfully off prednisone!! So I am going to tell you in all honesty, "I feel your pain".
I was on 5 mg daily for 7 years. In April I was tapered to half dose (2.5 mg) and my body was aarghhh! - achy, nausea, poor sleep, tired, grouchy, headaches. This surprised me because of the small dosage. After about 10 days I experiences a slight improvement. And after a month I was feeling okay. I did take some Tylenol to relieve the discomfort.
Then, when I was tapered to 0 mg, the symptoms returned:-( But at that time some other medical issues complicated things for me, and I was instructed to resume the 2.5 mg dosage. Finally in early Nov.2016, I was ready to taper again. This time I was advised to try the every other day approach. This worked well for me. After 6 weeks I quit completely.
I think that some people might just need longer for their body to adjust. You might want to talk to your doctor. I want to say that my taper was done with my medical team approval, and my routine labs were carried out to monitor my particular health concerns.

Here is what Mayo Clinic has to say about coming off prednisone.
http://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923
I hope I have been able to give you some answers. Let me know how you are doing.
Rosemary

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@rosemarya what’s the every other day approach that you used? I’m not familiar.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jun 17 1:28pm
In reply to @sassysaveur "@rosemarya what’s the every other day approach that you used? I’m not familiar." + (show)
Profile picture for sassysaveur @sassysaveur

@rosemarya what’s the every other day approach that you used? I’m not familiar.

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@sassysaveur - The every-other-day approach was my way of getting off prednisone. I had been taking 1/2 of my regular 5 mg dose at first. (my situation was complicated because I was also dealing with another medication dose reduction (Tacrolimus, one of my transplant antirejection meds) . So, when that was adjusted and I was ready to continue getting off prednisone, my PCP was very helpful to suggest a I take it extra slowly by halving my dose daily, then after a week or so, try skipping a day to give my body more time to adjust. Thus I called it the every-other-day approach. It worked for me as a way to get off prednisone successfully.
@sassysaveur, I am a transplant recipient (liver and kidney 2009)and I was taking 5 mg prednisone. Are you in the process of gettin off prednisone? How is it going for you?

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