How did you cope with the side effects tapering off prednisone?

Posted by abbeyc @abbeyc, Mar 19, 2022

Has anyone experienced issues when they first started to taper? this is day 2 for me (went from 16 mg to 14 mg) and I am experiencing headaches. Wondering if this is normal and if it will improve.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@staylorrn2000

Thanks for your reply. No, I have not checked to see what ingredients are in both but that’s an excellent idea.
I’m dizzy, cold clammy sweats, shaky, headache, nauseous, fatigued, and achy ( like flu achy.) So I don’t know if it’s from the change in manufacture or the drop in dosage. I didn’t think a 1 mg drop would produce such profound symptoms.

Jump to this post

The rule of thumb for prednisone reductions is not to reduce by more than 10% of the current dosage at a time, but that's for people who are on it long term such as for PMR. 10% of 5mg would be .5mg reduction. Since you haven't been on it long and you're taking it for a different reason, your reductions would be up to you and your doctor to decide. Definitely let him/her know about your current symptoms.

REPLY

May I ask what is considered a long time? I have researched that and I keep seeing very vague explanations of what a long time is. The most definitive answer I found was, I believe in Medscape (I have looked at so many sources) where it said if you’ve been on high does longer than 3 weeks or have had multiple rounds, in any form, including inhaled or even nasal route, then a tapper is required. I am seeing several references to the no more than 10 % as you said. If my symptoms continue tomorrow, I’ll go back to 5 mg and call my doctor. Thank you for your input.

REPLY

Perhaps it is the flu or one of the other bugs that are going around and not the Prednisone.

REPLY

Is it possible you have the flu coincidentally with dropping the dosage?

REPLY

The challenge is when you drop to a daily Prednisone dose that is quite low. I'm there now. At 3 or 4 mg/day of Prednisone, it's hard (impossible?) to take a dose that is 10% lower. At 3mg, 10% is .3 mg. Cutting the smallest 1 mg tablet in half, and setting aside the vagueness of the actual dose in those 2 halves, yields .5 mg per tab. So we alternate doses and go slow.

So far it's not going well for me. Looking forward to continuing to learn, experiment, and listen to my geriatric rheumatologist.

REPLY
@aussiedogmom

The challenge is when you drop to a daily Prednisone dose that is quite low. I'm there now. At 3 or 4 mg/day of Prednisone, it's hard (impossible?) to take a dose that is 10% lower. At 3mg, 10% is .3 mg. Cutting the smallest 1 mg tablet in half, and setting aside the vagueness of the actual dose in those 2 halves, yields .5 mg per tab. So we alternate doses and go slow.

So far it's not going well for me. Looking forward to continuing to learn, experiment, and listen to my geriatric rheumatologist.

Jump to this post

There are certainly challenges to the 10% recommendation once you get below 10 mg. If it were a semi strict rule then the taper would look like this:

10 mg to 9 mg (9 mg) for 1 month
9 mg to 8.1 mg (8 mg) for 1 month
8 mg to 7.2 mg (7 mg) for 1 month
7 mg to 6.3 mg (6.5 mg) for 1 month
6.5 mg to 5.9 mg (6 mg) for 1 month
6.0 mg to 5.4 mg (5.5 mg) for 1 month
5.5 mg to 5 mg (5 mg) for 1 month
5 mg to 4.5 mg (4.5 mg) for 1 month
4.5 mg to 4.1 mg' (4 mg) for 1 month
4 mg to 3.6 mg (3.5 mg) for 1 month
3.5 mg to 3.15 mg (3 mg) for 1 month
3 mg to 2.7 mg (2.5 mg) for 1 month

The above tapering plan would take 1 year. After a year, the taper is by .25 mg increments and takes another year. It would be interesting to see how many people flare before the end of the first year. My rheumatologist wouldn't have cared if I took 3 mg or less for the rest of my life.
-------------------------------------
In contrast to the above taper, while I was on Actemra, my taper was the following:
10 mg to 9 mg for 1 month
9 mg to 8 mg for 1 month
8 mg to 7 mg for 1 month
7 mg to 6 mg for 1 week
6 mg to 5 mg for 1 week
5 mg to 4 mg for 1 week
4 mg to 3 mg for 1 week

At this stage my cortisol level was too low. I was instructed to stay on 3 mg until my cortisol level improved. It took 6 months for my cortisol level to be called "adequate." I was reluctant to discontinue Prednisone but an endocrinologist said going from 3 mg to zero was okay. This was contingent on my cortisol level being adequate and I wasn't symptomatic. I was told that I could restart 3 mg of Prednisone "for any reason if I felt the need. " I needed to keep my endocrinologist informed if I felt the need to restart Prednisone.

The taper while on Actemra took approximately 1 year. I have stayed off Prednisone but now I take Actemra instead. I would say Actemra resulted in a significant improvement in my overall health and well being. My out of pocket financial cost is currently nothing because I get a monthly infusion.

I have been off Prednisone for more than 3 years. Now I have to figure out how to get off Actemra. My rheumatologist has no plan for stopping Actemra other than deceasing my infusion dose. At least I don't worry about what dose of Actemra I need to have. That is for my rheumatologist to decide based on my symptoms and my side effects.

REPLY
@dadcue

There are certainly challenges to the 10% recommendation once you get below 10 mg. If it were a semi strict rule then the taper would look like this:

10 mg to 9 mg (9 mg) for 1 month
9 mg to 8.1 mg (8 mg) for 1 month
8 mg to 7.2 mg (7 mg) for 1 month
7 mg to 6.3 mg (6.5 mg) for 1 month
6.5 mg to 5.9 mg (6 mg) for 1 month
6.0 mg to 5.4 mg (5.5 mg) for 1 month
5.5 mg to 5 mg (5 mg) for 1 month
5 mg to 4.5 mg (4.5 mg) for 1 month
4.5 mg to 4.1 mg' (4 mg) for 1 month
4 mg to 3.6 mg (3.5 mg) for 1 month
3.5 mg to 3.15 mg (3 mg) for 1 month
3 mg to 2.7 mg (2.5 mg) for 1 month

The above tapering plan would take 1 year. After a year, the taper is by .25 mg increments and takes another year. It would be interesting to see how many people flare before the end of the first year. My rheumatologist wouldn't have cared if I took 3 mg or less for the rest of my life.
-------------------------------------
In contrast to the above taper, while I was on Actemra, my taper was the following:
10 mg to 9 mg for 1 month
9 mg to 8 mg for 1 month
8 mg to 7 mg for 1 month
7 mg to 6 mg for 1 week
6 mg to 5 mg for 1 week
5 mg to 4 mg for 1 week
4 mg to 3 mg for 1 week

At this stage my cortisol level was too low. I was instructed to stay on 3 mg until my cortisol level improved. It took 6 months for my cortisol level to be called "adequate." I was reluctant to discontinue Prednisone but an endocrinologist said going from 3 mg to zero was okay. This was contingent on my cortisol level being adequate and I wasn't symptomatic. I was told that I could restart 3 mg of Prednisone "for any reason if I felt the need. " I needed to keep my endocrinologist informed if I felt the need to restart Prednisone.

The taper while on Actemra took approximately 1 year. I have stayed off Prednisone but now I take Actemra instead. I would say Actemra resulted in a significant improvement in my overall health and well being. My out of pocket financial cost is currently nothing because I get a monthly infusion.

I have been off Prednisone for more than 3 years. Now I have to figure out how to get off Actemra. My rheumatologist has no plan for stopping Actemra other than deceasing my infusion dose. At least I don't worry about what dose of Actemra I need to have. That is for my rheumatologist to decide based on my symptoms and my side effects.

Jump to this post

And how did you get a 4.1 mg or a 3.15 mg dose? Did you have it compounded? Are these doses available at retail?

Yahoo Mail: Search, Organize, Conquer

REPLY

I also take Kevzara, which has been dramatically more powerful than the Prednisone.

REPLY
@aussiedogmom

And how did you get a 4.1 mg or a 3.15 mg dose? Did you have it compounded? Are these doses available at retail?

Yahoo Mail: Search, Organize, Conquer

Jump to this post

The dose between parentheses ( ) is what the "semi-strict" taper would be. A liquid dose of Prednisone might allow for "precise" doses but that would be another challenge.

REPLY
@aussiedogmom

I also take Kevzara, which has been dramatically more powerful than the Prednisone.

Jump to this post

Hopefully Kevzara makes tapering off Prednisone easier for you.

REPLY
Please sign in or register to post a reply.