Any Tips For Tapering Off Prednisone?

Posted by hopeinal @hopeinal, Aug 26 12:19pm

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.

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

DadCue | @dadcue | Aug 28 10:55am

In reply to @jlo2252 "@hopeinal Oh no! Sjogrens can also cause you joint pain. I can sympathize, I have PMR..." + (show)

Funny story when I was diagnosed with reactive arthritis. I saw a PCP who said he knew what the problem was but my eye (uveitis) had priority so he sent me to an ophthalmologist. My PCP said for me to come back to see him after the ophthalmologist was finished with me. I spent the entire day with the ophthalmologist getting eye drops and things done. At one stage the ophthalmologist had a handful of little white pills that he wanted me to take saying the pills would help the inflammation inside my eye.

I didn't know what the pills were at the time. My eye improved after countless eye drops while I in the chair at ophthalmology. I was sent back to the PCP when the ophthalmologist said they were ready to see me.

I spent at least two hours with the PCP because he had an entourage of medical students with him. He was explaining what to look for when a patient presented with reactive arthritis. The PCP wanted me to do a "show and tell" everything. I was a nursing student at the time so being thoroughly examined wasn't too unusual. I didn't mind the "telling part" but nothing was off limits with "showing every part" of me. The medical students looked at everything! They found stuff that I didn't know was there.

When it came time to treat me --- sulfasalazine was in vogue at the time. I had a follow-up visit a week later and I told the PCP that I was cured --- all the pain was gone. The PCP was surprised and said it must have been a coincidence because he said sulfasalazine wouldn't have worked that quickly.

Many years later I was thinking about the little white pills the ophthalmologist gave me. I'm now certain those little white pills were my first Prednisone dose ever and probably not a small dose.

besmith57 | @besmith57 | Aug 28 11:16am

In reply to @andirae "How long on kevzara? How long before you noticed it helped?" + (show)

I have been taking it for about 3 1/2 months. I don't know if it's working other than I have been able to taper. That's a good thing, I guess.

DadCue | @dadcue | Aug 28 1:01pm

In reply to @besmith57 "I have been taking it for about 3 1/2 months. I don't know if it's working..." + (show)

"I don't know if it's working other than I have been able to taper. That's a good thing, I guess."

I didn't know if Actemra was working for the first 3 months. I wasn't sure how I should taper prednisone when Actemra was started. I stayed with my usual 1 mg per month prednisone taper for the first 3 months.

I could only say Actemra "might be working" when I got to 7 mg because that was the dose where I usually had a flare. I wasn't confident that Actemra was working but I was getting impatient. I decided to taper my prednisone dose by 1 mg per week until I got to 3 mg of prednisone. I wanted to get the "inevitable flare" over with so that was why I tapered so quickly.

I got nervous when I got to 3 mg. I decided to ask my rheumatogist about what I should do. I described my symptoms to my rheumatologist and he was concerned about a low cortisol level so that was checked. My cortisol level was low so my rheumatologist said to stay on 3 mg until I saw an endocrinologist.

My endocrinology visit was several months away so I just stayed on 3 mg. The endocrinologist verified a low cortisol level so she recommended I stay on 3 mg even longer. At my next visit, the endocrinologist said my cortisol level was "adequate."

I hate to say this - my endocrinologist said I didn't need to taper prednisone from 3 mg to zero as long as my cortisol level was adequate. So much for slow tapers ... I guess. I had to stay on 3 mg for a total of about 6 months.

I didn't stop prednisone immediately. I tapered from 3 mg to zero in a little over a week as I recall.

Don't do what I did . It would be better to ask your rheumatolgist and keep them informed about the symptoms you are having.

besmith57 | @besmith57 | Aug 28 2:58pm

In reply to @dadcue ""I don't know if it's working other than I have been able to taper. That's a..." + (show)

Thanks for sharing your info on tapering. Today is my first day at 3.5 mgs. I don't see my rheumatologist until the end if September. I'm sure blood work will be done then. I hope I don't have to see an endocrinologist too. I'm tired of dr visits. Lol

nancy53 | @nancy53 | Aug 29 8:22am

Have you tried dropping by 0.5mg instead of a whole mg? Maybe try going 3 weeks before dropping down to a lower dose.

jlo2252 | @jlo2252 | Aug 29 10:31am

In reply to @dadcue ""At what point should you be measuring cortisol levels. And what is an acceptable level" Testing..." + (show)

@dadcue

"At what point should you be measuring cortisol levels. And what is an acceptable level"

Testing for a low cortisol level isn't so easy to do. My endocrinologist said I needed to be "stabilized" on 3 mg of prednisone or less. I took that to mean I needed to be able to stay on 3 mg of prednisone without having a PMR flare long enough for my body to be "adjusted" to 3 mg of prednisone.

A cortisol level is hard to measure because of how prednisone interacts with the production of cortisol by the adrenals. The way I understand it --- your cortisol level will be low on higher doses of prednisone. That is because prednisone replaces the cortisol that our adrenals should be producing.

Supposedly 3 mg of prednisone is low enough to allow the adrenals to sense a low cortisol level. Ideally, the adrenals should react instantly but that doesn't happen when we take prednisone. It can take a long time for the adrenal to react. This is referred to as chronic adrenal suppression as a side effect from prednisone use.

CHRONIC ADRENAL SUPPRESSION
The goal in treating chronic adrenal suppression is to replace Prednisone in a fashion that will permit a reasonable quality of life and at the same time encourage recovery of normal hypothalamic-pituitary-adrenal function which is also known as the HPA axis.
https://my.clevelandclinic.org/health/body/hypothalamic-pituitary-adrenal-hpa-axis
This is a very complex mechanism and probably explains why we have PMR flares when we are stressed. Taking manufactured forms of glucocorticoids (corticosteroids) for rheumatology conditions may increase your risk of HPA axis suppression.

The best way to get this mechanism functioning again is to taper prednisone slowly so as to allow the adrenals time to start producing cortisol again.

Sorry ... according to my endocrinologist, there is no prednisone tapering scheme that works well enough to say one way works any better than another way.

Measuring my cortisol level wasn't that reliable either. My morning 8 a.m cortisol level was measured when I was able to stay on 3 mg of prednisone. My cortisol level was low as expected because I was on Prednisone for a very long time.

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@dadcue
Wow….😮
Dadcue, as always, I’m totally in awe of your detailed, easily understandable responses!
Thank you!

DadCue | @dadcue | Aug 29 10:44am

In reply to @jlo2252 "@dadcue Wow….😮 Dadcue, as always, I’m totally in awe of your detailed, easily understandable responses! Thank..." + (show)

Much of my job as a nurse was to make rounds with the doctors. I knew the patients but the doctors didn't have the time to explain everything. The doctors I worked with the most were research doctors so sometimes they lacked bedside manners. They would give their spiel and leave. I was expected to stay behind and explain things to the patient.

If the patient had questions that I couldn't explain I would never make something up. I would catch up with the doctor to get their answer or otherwise I said I would get the answer. Most of the time the question would be addressed the next day.

hopeinal | @hopeinal | Aug 29 11:01am

In reply to @dadcue "Much of my job as a nurse was to make rounds with the doctors. I knew..." + (show)

LOL Been there, done that, got the tee shirt.

jlo2252 | @jlo2252 | Aug 29 12:30pm

In reply to @hopeinal "LOL Been there, done that, got the tee shirt." + (show)

I’m not a nurse but I was in the medical field for 45 years, 20 of those in hospitals! I have so much respect for what you nurses do—Dadcue and hopeinal you are awesome! When I go to urgent care I’m so happy when I get a nurse practitioner over an MD cause I know the RN has my back and will explain things! Ok, there are some good doctors out there, too, but usually I liked seeing a nurse. Most of the time I found the nurses more knowledgeable! ❤️

jlo2252 | @jlo2252 | Aug 30 5:38am

In reply to @besmith57 "Thanks for sharing your info on tapering. Today is my first day at 3.5 mgs. I..." + (show)

@besmith57
Sounds like your doing good in your tapering. I know what you mean about being tired of doctors office visits—-especially when you have multiple specialists that you have to see, lol. And then they all want labs too, of course— I just do them all at once, lol.
Please keep us posted on your progress with the rheumatologist!