If you have tapering problems below 5 mg this might explain why.

Posted by Mike @dadcue, Sep 16, 2024

https://www.nadf.us/secondary-adrenal-insufficiency.html
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The following explains the challenges we need to overcome. I believe this is exactly what happened to me.

"The most difficult issue is that symptoms of adrenal insufficiency will be present during the tapering phase, because low levels of cortisol are the only trigger to the pituitary to stimulate the return of ACTH production and the restoration of normal pituitary-adrenal responsiveness.

The longer high dose steroids were given for a disease like asthma, rheumatoid arthritis, polymyalgia rheumatica or inflammatory bowel disease, the more likely that an individual will suffer from adrenal insufficiency symptoms on withdrawal of the steroids.

In addition, tapering off the steroids may cause a relapse of the disease that had been treated, causing a combination of disease symptoms overlapping with adrenal insufficiency symptoms. That is why it is very common for steroid tapers to be aborted, with a temporary return to therapeutic doses of glucocorticoids, followed by a slow attempt at tapering if the primary disease is in remission. "

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

Profile picture for Mike @dadcue

"But if you're on a relatively low dose of prednisone and hope to be off of it at some point, it might make more sense to not take a biologic drug."
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I just wanted to add that this was exactly what I was told when Actemra was offered to me. The comment was, " If I only needed 3 mg of Prednisone there wouldn't be much concern and Actemra wouldn't have been offered." The context was 12 years on prednisone and still taking 10 mg daily. Even then, I was asked to taper my Prednisone dose as low as I could get before starting Actemra. I could only taper to 7 mg before I went back to 10 mg.

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Yes, this approach makes perfect sense, doesn't it. Yet some doctors want their patients off steroids completely as soon as possible. I have seen people get down to 5 mg of pred and have to sit their for a while while their adrenals start to wake up, and yet have a doctor insisting that they need to add in methotrexate, etc to get off the steroids. As good progress has been made already at getting so low, and more progress is likely, the risk of adding in other potentially toxic medications doesn't seem to warrant it.

Unfortunately, I seem to be in a similar position to yourself as I haven't been able to taper steroids below 10 mg after 2 years and keep flaring which shoots the dose up way too high again. Hoping that I may get approval for Actemra in the near future if the current tapering schedule fails.

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Diagnosed GCA Jan 2025. Started 60mg prednisone, and started monthly infusions of Actemra about 3 weeks later. Now tapered to 7.5 mg prednisone for two weeks, to be followed by 5mg for one month, then 4,3,2,1 for one month each. Never had a single side effect from Actemra, and all is well so far. I expect to continue with Actemra for as long as necessary.

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If you are having trouble tapering Prednisone down below 5mg?

Try removing the statins that your doctor is still insisting you take.

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Profile picture for hosers2 @hosers2

If you are having trouble tapering Prednisone down below 5mg?

Try removing the statins that your doctor is still insisting you take.

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I was able to discontinue my statin after I got off prednisone. High cholesterol was one of my side effects from prednisone.

I see your point though. As I decreased my prednisone dose and stayed on my statin … my cholesterol level got too low. I didn’t have a high cholesterol level anymore after prednisone was stopped.

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Profile picture for Mike @dadcue

I was able to discontinue my statin after I got off prednisone. High cholesterol was one of my side effects from prednisone.

I see your point though. As I decreased my prednisone dose and stayed on my statin … my cholesterol level got too low. I didn’t have a high cholesterol level anymore after prednisone was stopped.

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I got close to needing a statin when I was taking prednisone, but my cholesterol dropped pretty quickly as I tapered. Also the pressure in one eye got close to needing treatment, but it dropped too as I tapered.

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I got muscle pains but not charley-horse cramps in lower legs after 2 years of fighting PMR. Then added more muscle cramps as the PMR declined. History---One 2021 heart ablation knocked out double-heartbeat at age 82, as did a younger softball buddy-- ditto. PMR may be hiding somewhere now but I got healthy enough last year to start sudden muscle pain and weakness again, (Sarcopenia) is now knocked back with daily Creatine suppliment. Slight neuropathy- is shared with many of my young geezer (65 to 80) softball players, who usually quit playing about 76, not recognizing Sarcopenia as poor processing of ingested protein food. Look it up! Creatine allowing 20 minutes/day hard bike ride, plus yields me little calf cramping, serious pickleball AND softball games at age 84.

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Profile picture for daveycarls @daveycarls

I got muscle pains but not charley-horse cramps in lower legs after 2 years of fighting PMR. Then added more muscle cramps as the PMR declined. History---One 2021 heart ablation knocked out double-heartbeat at age 82, as did a younger softball buddy-- ditto. PMR may be hiding somewhere now but I got healthy enough last year to start sudden muscle pain and weakness again, (Sarcopenia) is now knocked back with daily Creatine suppliment. Slight neuropathy- is shared with many of my young geezer (65 to 80) softball players, who usually quit playing about 76, not recognizing Sarcopenia as poor processing of ingested protein food. Look it up! Creatine allowing 20 minutes/day hard bike ride, plus yields me little calf cramping, serious pickleball AND softball games at age 84.

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I've had trouble digesting protein for about 10 years. I'm 71. I think my problem has been low stomach acid due to aging plus hypothyroidism. I eat a lot of fish now. It's a lot easier to digest than meat and doesn't cause digestive issues for me like eggs and dairy.

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Thank u very much for that explanation. It makes sense. With that in mind, what does one do? How do I know what are acceptable and productive levels of pain during the tapering process and what might be an unproductive return to a PMR flare? Thank you very much for any insight u have.

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Profile picture for jeff97 @jeff97

I've had trouble digesting protein for about 10 years. I'm 71. I think my problem has been low stomach acid due to aging plus hypothyroidism. I eat a lot of fish now. It's a lot easier to digest than meat and doesn't cause digestive issues for me like eggs and dairy.

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As I explained the source of our common problem.......Sarcopenia is what it
is called.. Ok now please use Google for an explanation, and what to
do.....Creatine helps very much. . .

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I believe this is what is happening to me also. I'm on my second round of coming down off of Prednisone and currently down to 3 mg so far no problems. Instead of decreasing 1 mg every month, I decrease 1 mg every other day for two weeks then 1 mg for four weeks. Example: 4 mg/3 mg every other day then 3 mg.

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