Prednisone adventure keeps on giving

Posted by jillkellyauthor @jillkellyauthor, Jan 6 10:43am

I've been off prednisone for almost two months, I was on it for 11 months from 1mg to 8 mg back down to nothing. For the last 9 days, I have had an exceptionally shitty cold that I can't shake. I knew vaguely that prednisone impacts the immune system but somehow thought I'd be exempt. I'm not. My doc also recommends that I mask up in public for the next several months as the new flu and viruses swirl around us.

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Profile picture for caroljeand @caroljeand

@tweetypie13
I am at 3 mg and on schedule to be off completely February 20…., can’t wait to see if it the cause for all my gastric issues. There are days the acid is uncontrollable even with meds. Thankful for kevzara option.

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I also have the gastric issues😬
I am bit afraid of biologics, but prednisone is not good either. I’m going to try again to get lower. On 5 1/2 mg for 4 days now. I always have some pain, just don’t want it unbearable.

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Profile picture for sharon44r @sharon44r

I also have the gastric issues😬
I am bit afraid of biologics, but prednisone is not good either. I’m going to try again to get lower. On 5 1/2 mg for 4 days now. I always have some pain, just don’t want it unbearable.

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@sharon44r
I feel like Kevzara is helping me make a smooth transition off prednisone. As far as I know I don’t have any adverse effects but guess I’ll know better once I’m totally off the steroid.

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Profile picture for caroljeand @caroljeand

@sharon44r
I feel like Kevzara is helping me make a smooth transition off prednisone. As far as I know I don’t have any adverse effects but guess I’ll know better once I’m totally off the steroid.

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@caroljeand ditto with my experience

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I read it’s not so easy to wean off Kevzara. And you have to take it for a long time. Anyone know if this is true?
I guess I’m a bit scared cause I have severe neuropathy and breast cancer. I think the prednisone is affecting the muscles in my legs. Barely walking with cane.
The PMR or whatever it is, I think was caused from the first two covid vaccines. I was in ER 2 weeks after 2nd shot. .
I really do want to get off prednisone. But at 76 yrs of age I’m afraid of something else attacking me. It’s hard for me to get under 6mgs.
I will try hard 🙏 and maybe give that Biologic a try.
May I ask how long were you on prednisone, and did you have any adrenaline problems with it , like not making your own cortisol?
Thx for all the info

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Profile picture for sharon44r @sharon44r

I read it’s not so easy to wean off Kevzara. And you have to take it for a long time. Anyone know if this is true?
I guess I’m a bit scared cause I have severe neuropathy and breast cancer. I think the prednisone is affecting the muscles in my legs. Barely walking with cane.
The PMR or whatever it is, I think was caused from the first two covid vaccines. I was in ER 2 weeks after 2nd shot. .
I really do want to get off prednisone. But at 76 yrs of age I’m afraid of something else attacking me. It’s hard for me to get under 6mgs.
I will try hard 🙏 and maybe give that Biologic a try.
May I ask how long were you on prednisone, and did you have any adrenaline problems with it , like not making your own cortisol?
Thx for all the info

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@sharon44r
Sorry this is so long. I can’t answer your question, because we are all so different. Hope my story helps.

I am 79yo female. Just passed 2 yr mark and seem to be in a great place.
Started Kevzara April last yr nd was at 8 mg prednisone . Self tapered off all prednisone by 7/15. Am currently at Kevzara shots every 3 weeks.
I have NO SIDE EFFECTS, energy levels are close to pre PMR levels, if not better in some areas. You have no idea how excited I was to be able to sit on the toilet and get up off it WITHOUT using my hands and NO PAIN.
This blog has told me that one can stop Kevzara cold turkey.
My goal is to be off Kevzara by end April!! ! Which will be my 80th birthday. It will also be at the end of one year on Kevzara.

Hang in there.

REPLY
Profile picture for sharon44r @sharon44r

I read it’s not so easy to wean off Kevzara. And you have to take it for a long time. Anyone know if this is true?
I guess I’m a bit scared cause I have severe neuropathy and breast cancer. I think the prednisone is affecting the muscles in my legs. Barely walking with cane.
The PMR or whatever it is, I think was caused from the first two covid vaccines. I was in ER 2 weeks after 2nd shot. .
I really do want to get off prednisone. But at 76 yrs of age I’m afraid of something else attacking me. It’s hard for me to get under 6mgs.
I will try hard 🙏 and maybe give that Biologic a try.
May I ask how long were you on prednisone, and did you have any adrenaline problems with it , like not making your own cortisol?
Thx for all the info

Jump to this post

@sharon44r
I am a 78 year old female and self diagnosed my PMR shortly after a traumatic injury to my heel needing 7 stitches.
After a few weeks I was feeling weak and started having trouble getting off the toilet and trouble getting in and out of the car when I should have been healing from the injury. Since my mother had PMR I was familiar with the symptoms so the injury triggered the gene causing total body weakness and pain. The injury was the last week of June 2025 and the official diagnosis was last week of August 2025. Needless to say when I left the doctor’s office I picked up the steroid and took it that day. A day later I was feeling relief.
Kevzara was started in November when I was on 5 mg. so I have had a total of 5 injections so far. My only issues have been gastric which I am not sure if they are due to the prednisone or cortisol issues. My endocrinologist feels I am producing cortisol and I have had gastric issues before kevzara. Timeline for prednisone freedom is in 40 days!

REPLY
Profile picture for caroljeand @caroljeand

@sharon44r
I am a 78 year old female and self diagnosed my PMR shortly after a traumatic injury to my heel needing 7 stitches.
After a few weeks I was feeling weak and started having trouble getting off the toilet and trouble getting in and out of the car when I should have been healing from the injury. Since my mother had PMR I was familiar with the symptoms so the injury triggered the gene causing total body weakness and pain. The injury was the last week of June 2025 and the official diagnosis was last week of August 2025. Needless to say when I left the doctor’s office I picked up the steroid and took it that day. A day later I was feeling relief.
Kevzara was started in November when I was on 5 mg. so I have had a total of 5 injections so far. My only issues have been gastric which I am not sure if they are due to the prednisone or cortisol issues. My endocrinologist feels I am producing cortisol and I have had gastric issues before kevzara. Timeline for prednisone freedom is in 40 days!

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@caroljeand are you off the prednisone now totally? I have been on it for over 3 years , 6- 7 mg if no flairs.
Seeing new rheumatologist this week. I have stomach problems from prednisone and possibly before.

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Profile picture for sharon44r @sharon44r

@caroljeand are you off the prednisone now totally? I have been on it for over 3 years , 6- 7 mg if no flairs.
Seeing new rheumatologist this week. I have stomach problems from prednisone and possibly before.

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@sharon44r
I am on 3 mg now tapering one mg every 15 days, so that puts me at my last pill on February 20.
Fingers crossed!

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