1. < Autoimmune Diseases

How to wean off prednisone 5mg without side effects?

Posted by staylorrn2000 @staylorrn2000, Dec 30, 2024

Hello. I’ve been multiple “bursts” of prednisone over the last year, with each time weaning off becoming more difficult. I desperately want off of this drug but this time I was out on an alternate day taper 5mg one day next day 2.5 mg for one month then 2.5 mg for one month then off. I couldn’t tolerate going down to 2.5 mg without bad withdrawal symptoms or questionable adrenal insufficiency so now I’ve been prescribed 4 mg for 1 month 3 mg for 1 month 2 mg for 1 month the 1 mg for 1 month; I start this taper tomorrow. This seems like an excessively long taper to me. Has anyone else had a difficult time tapering off of 5 mg and would you share your side effects coming off and also if you do have a successful taper where you were able to stop it completely?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

staylorrn2000 | @staylorrn2000 | Dec 31, 2024

@becsbuddy , it’s 5 AM and I just finished reading your encouraging and thoughtful message. The first “good thing” I’m going to write in my journal is about this much needed note from you. I too am a retired Registered Nurse so from one nurse to another, thank you so very much!

REPLY
DadCue | @dadcue | Dec 31, 2024
In reply to @becsbuddy "@staylorrn2000 I just finished a 5mg to zero taper. I had tried so many times before..." + (show)
@becsbuddy

@staylorrn2000 I just finished a 5mg to zero taper. I had tried so many times before but didn’t like the way i was feeling, whatever. I think my doctors all got the message that I needed to go slowly and they finally agreed. I would decrease by 1 mg a month like you’re planning to do. This time I went into the taper with a positive attitude, telling myself “this no big deal.” Anyway, I had no trouble this time. I had been on prednisone for 6 years non-stop! Now that I’m off, I feel really good and wish I could get rid of the AI disease as easily.
I know that you can do this! You need to do this! Start a notebook/journal and write in it daily. Write only the good things that happen. If you have taper side effects, don’t completely ignore them. Just write them down. As time goes on, you’ll see that the good times are way more than the bad times. Celebrate each victory . Just don't be serious. If a side effect does seem more serious than you’ve had before, do let your doc know. I think this is enough. It’s after midnight and I have to go to bed! Give yourself a good pep talk!

Jump to this post

I'm so happy to read these words of "encouragement" to taper off Prednisone.

It was the words to "take more Prednisone" whenever I had pain that wasn't working for me. It was easy for me to take more Prednisone so I didn't need any help with that part of it.

It was tapering off Prednisone that was extremely difficult and I needed a lot of encouragement for a very long time.

Why were you on prednisone for 6 years?

REPLY
1 reply
windyshores | @windyshores | Dec 31, 2024

In our experience it is sometimes helpful toward the end of a taper (say, the last 1-2 mg) to do increments less than a whole mg. That might not be necessary but throwing it out there!

REPLY
1 reply
DadCue | @dadcue | Dec 31, 2024
In reply to @windyshores "In our experience it is sometimes helpful toward the end of a taper (say, the last..." + (show)
@windyshores

In our experience it is sometimes helpful toward the end of a taper (say, the last 1-2 mg) to do increments less than a whole mg. That might not be necessary but throwing it out there!

Jump to this post

I personally didn't think increments less than 1 mg was helpful. Many people will disagree. It is a good question but I don't think my body could discern that small of an amount of Prednisone. I feel like the makers of Prednisone would make .5 mg tablets if that was the case. However, those 1 mg tablets are scored so I guess it is fine to split them in half. I was too lazy to do that though.

I was skeptical when an endocrinologist told me 3 mg was such a small dose that I wouldn't need to taper. She said I could simply stop taking Prednisone. That hinged on me having an adequate cortisol level. Even then I wasn't totally convinced that I should do that.

I’m a skeptic by nature. I don’t completely agree with anything I say. People can say anything to me and I try to be agreeable.

REPLY
1 reply
staylorrn2000 | @staylorrn2000 | Dec 31, 2024
In reply to @dadcue "I personally didn't think increments less than 1 mg was helpful. Many people will disagree. It..." + (show)
@dadcue

I personally didn't think increments less than 1 mg was helpful. Many people will disagree. It is a good question but I don't think my body could discern that small of an amount of Prednisone. I feel like the makers of Prednisone would make .5 mg tablets if that was the case. However, those 1 mg tablets are scored so I guess it is fine to split them in half. I was too lazy to do that though.

I was skeptical when an endocrinologist told me 3 mg was such a small dose that I wouldn't need to taper. She said I could simply stop taking Prednisone. That hinged on me having an adequate cortisol level. Even then I wasn't totally convinced that I should do that.

I’m a skeptic by nature. I don’t completely agree with anything I say. People can say anything to me and I try to be agreeable.

Jump to this post

I too am skeptical. Having worked in health care for many years I know when doctors have a complicated patient, chronic illness, or symptoms that aren’t text book or that are not responding to prescribed treatment, they tend to get frustrated and lean towards it must be “ psychosomatic”
I’m not one to want to take medication and I don’t want to just mask symptoms. I want to get to the root of the problem and find a real solution.

REPLY
1 reply
windyshores | @windyshores | Dec 31, 2024

I am very sensitive to methylprednisolone and prednisone. A mere 2mg sent me to the hospital with afib. So small increments tend to work for me in terms of use and for tapers! We are all different and things vary with the individual.

In some ways, my inability to take steroids is a threat to my health but it is what it is.

REPLY
2 replies
staylorrn2000 | @staylorrn2000 | Dec 31, 2024
In reply to @windyshores "I am very sensitive to methylprednisolone and prednisone. A mere 2mg sent me to the hospital..." + (show)
@windyshores

I am very sensitive to methylprednisolone and prednisone. A mere 2mg sent me to the hospital with afib. So small increments tend to work for me in terms of use and for tapers! We are all different and things vary with the individual.

In some ways, my inability to take steroids is a threat to my health but it is what it is.

Jump to this post

Sorry to hear this. I too am very sensitive to medication so I know exactly what you are dealing with. I could tolerate only pediatric doses of pain medication after a major back surgery. I avoid all medications if at all possible. I think k my sensitivities is partially responsible for this nightmare I’m living with this Prednisone.

REPLY
1 reply
DadCue | @dadcue | Dec 31, 2024
In reply to @windyshores "I am very sensitive to methylprednisolone and prednisone. A mere 2mg sent me to the hospital..." + (show)
@windyshores

I am very sensitive to methylprednisolone and prednisone. A mere 2mg sent me to the hospital with afib. So small increments tend to work for me in terms of use and for tapers! We are all different and things vary with the individual.

In some ways, my inability to take steroids is a threat to my health but it is what it is.

Jump to this post

"In some ways, my inability to take steroids is a threat to my health but it is what it is."
---------------------------
I could "tolerate" prednisone but that was because I have taken so much of it over many, many years. I didn't tolerate prednisone well when I first started taking it. Prednisone had such an immediate positive effect in terms of pain relief that I would overlook all the side effects. There was nothing positive about weight gain, insomnia and cataracts at the age of 40.

After many years, I decided not to take prednisone anymore. Then the pain was so incredible I was diagnosed with PMR and took moderately high prednisone doses daily for another 13 years!

I told someone who experienced an adrenal crisis that I felt "more normal" when I took prednisone. She tried to "reeducate" me and was concerned that I might have symptoms of adrenal insufficiency. We had so much in common that she convinced me that I was playing with fire with "liberal" dosing with Prednisone.

I never could comprehend people who insist that their "quality of life" is better being on Prednisone. At one stage, I agreed that Prednisone helped until I realized that my life probably "depended" on me taking prednisone. That was when I started to look at prednisone more critically. I already knew my quality of life wasn't very good being on Prednisone.

Now that I'm off Prednisone ... I'm better off.

I think we go through stages regardless of why we take Prednisone initially.

REPLY
2 replies
windyshores | @windyshores | Dec 31, 2024
In reply to @dadcue ""In some ways, my inability to take steroids is a threat to my health but it..." + (show)
@dadcue

"In some ways, my inability to take steroids is a threat to my health but it is what it is."
---------------------------
I could "tolerate" prednisone but that was because I have taken so much of it over many, many years. I didn't tolerate prednisone well when I first started taking it. Prednisone had such an immediate positive effect in terms of pain relief that I would overlook all the side effects. There was nothing positive about weight gain, insomnia and cataracts at the age of 40.

After many years, I decided not to take prednisone anymore. Then the pain was so incredible I was diagnosed with PMR and took moderately high prednisone doses daily for another 13 years!

I told someone who experienced an adrenal crisis that I felt "more normal" when I took prednisone. She tried to "reeducate" me and was concerned that I might have symptoms of adrenal insufficiency. We had so much in common that she convinced me that I was playing with fire with "liberal" dosing with Prednisone.

I never could comprehend people who insist that their "quality of life" is better being on Prednisone. At one stage, I agreed that Prednisone helped until I realized that my life probably "depended" on me taking prednisone. That was when I started to look at prednisone more critically. I already knew my quality of life wasn't very good being on Prednisone.

Now that I'm off Prednisone ... I'm better off.

I think we go through stages regardless of why we take Prednisone initially.

Jump to this post

Prednisone activates my atrial fibrillation unfortunately. I have lupus, probable scleroderma, spina fractures, cervical stenosis/myelopathy, neuropathy etc. etc. and it sure would help to take it short term. When I was in the hospital with COVID the doctor said "I don't know how to treat year m'aam." Great!

That said, I have a friend who feels great on it, loves it, and seems to take it all the time- without talking to her doctor a lot of those times. Aside from other effects, I worry about her bones. Her arthritis is really bad (erosive). I suggested she talk to the MD about maybe taking a low dose- 5mg? 3mg? Has that helped any of you long term?

REPLY
1 reply
staylorrn2000 | @staylorrn2000 | Dec 31, 2024
In reply to @dadcue ""In some ways, my inability to take steroids is a threat to my health but it..." + (show)
@dadcue

"In some ways, my inability to take steroids is a threat to my health but it is what it is."
---------------------------
I could "tolerate" prednisone but that was because I have taken so much of it over many, many years. I didn't tolerate prednisone well when I first started taking it. Prednisone had such an immediate positive effect in terms of pain relief that I would overlook all the side effects. There was nothing positive about weight gain, insomnia and cataracts at the age of 40.

After many years, I decided not to take prednisone anymore. Then the pain was so incredible I was diagnosed with PMR and took moderately high prednisone doses daily for another 13 years!

I told someone who experienced an adrenal crisis that I felt "more normal" when I took prednisone. She tried to "reeducate" me and was concerned that I might have symptoms of adrenal insufficiency. We had so much in common that she convinced me that I was playing with fire with "liberal" dosing with Prednisone.

I never could comprehend people who insist that their "quality of life" is better being on Prednisone. At one stage, I agreed that Prednisone helped until I realized that my life probably "depended" on me taking prednisone. That was when I started to look at prednisone more critically. I already knew my quality of life wasn't very good being on Prednisone.

Now that I'm off Prednisone ... I'm better off.

I think we go through stages regardless of why we take Prednisone initially.

Jump to this post

I want to know if the symptoms I’m having when I try to decrease the prednisone are drug withdrawal that won’t actually put me in danger of an adrenal crisis but are non the less miserable, or are they from true adrenal insufficiency, two very different things. Yet when I conveyed this to my Endo she said it really doesn’t matter because either way, the treatment is taking 5 mg of prednisone. I wasn’t satisfied with that answer and asked about having the ATCH challenge test and she poo pooed that, but did agree to give me the tapper of 1mg less per month. I feel like I’m talking to a wall but health care options are very limited in my area. I just want off of this what I now call poison.

REPLY
View MoreView Less
Please sign in or register to post a reply.