Almost off Pred, but Very fatiqued

Is this a symptom of not enough pred? or does it have to do with cortisol levels?
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I think it is 2 sides of the same coin. The treatment for adrenal insufficiency is a synthetic corticosteroid to replace the less than adequate level of natural cortisol. Adrenal insufficiency is probably the single biggest reason why it is so difficult to successfully taper off prednisone. No matter how slowly we taper, getting completely off Prednisone is easier said than done, particularly for people on long-term treatment.

If he currently has no pain on 1/2 mg of Prednisone every other day then it probably isn't PMR. When I tapered off Prednisone, it took at least a year for the overwhelming fatigue to improve.

The weakness I still have is currently confined to my lower extremities. My legs are weak because of severe lumbar spinal stenosis which went undiagnosed when I was on prednisone. Prednisone controlled the pain that you would typically experience from spinal stenosis but Prednisone didn't prevent the damage caused by chronic inflammation.

Spinal stenosis is often caused by age-related wear and tear, such as thickened ligaments or bone spurs that narrow the spinal canal. Prednisone cannot reverse these structural problems. It only treats the symptoms (inflammation) rather than the root cause.

Thank you. Rheum. dr. says he should try to completely go off since he's only taking 1/2 every other day and "so close". My husband seems to think if he goes back up and takes 1/2 mg Every day, it will boost his energy?? It's all about fatique at this point. (not mentioned, but he's 80 and preaches 3 x's on Sun. and Wed. at church- Pastor) One more thing.... I see it mentioned in your response and others, regarding Adrenal insufficiency. Has anyone taken supplements for adrenal gland to help?

I’m 79 yrs old…..off prednisone almost 3 months and I’m still on Kevzara. Stamina is hard to come by….I work at it everyday, for a few to several times a day. I.e., walk 2+ miles, swim, pool walk, lt exercise, heavy housework, etc.
Sorry to be the bearer of the news……it does get better but takes time. The hotter the temps the harder for me too.
There are days of significant break thru to keep me going.

Hang in there

PS: get off prednisone is best for me, and wish I did it sooner.

Ask your rheumatologist about DHEA and CoQ10 both are
OTC supplements.

The evidence for DHEA is inconclusive. I tried it once but only for a month. I didn't want to take it long term.
https://journals.lww.com/co-endocrinology/abstract/2022/06000/the_role_for_long_term_use_of.8.aspx#:~:text=Recent%20findings,metabolic%20markers%20have%20been%20demonstrated.
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CoQ10 might help but I haven't tried it. A person would probably need to taper off Prednisone first. My endocrinologist said nothing would help "Prednisone induced adrenal insufficiency "except for slowly tapering off Prednisone. If I still needed Prednisone for PMR, there was nothing my endocrinologist could do,

"The effectiveness of nutritional antioxidants in combating oxidative stress caused by adrenal hormone imbalance is undeniable. Antioxidants, such as vitamin C, vitamin E, carotenoids, selenium, zinc, polyphenols, coenzyme Q10, and probiotics, play vital roles in mitigating the negative effects of oxidative stress on adrenal hormone balance. By mitigating dangerous free radicals and reducing oxidative damage, these antioxidants can aid in the restoration and maintenance of adrenal hormone function."
https://www.frontiersin.org/journals/endocrinology/articles/10.3389/fendo.2023.1271521/full
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This might be a good question for Dr. Megan--The Prednisone Pharmacist. I doubt a rheumatologist would know too much about supplements for adrenal insufficiency. My endocrinologist knew about adrenal insuffiency but she referred me back to my rheumatologist to see if "anything else" could treat PMR.

The referrals back and forth between my rheumatologist and endocrinologist resulted in a trial of Actemra which controlled PMR. Actemra doesn't suppress my adrenal function. After I got down to a lower dose of Prednisone and subsequently tapered off Prednisone completely -- my cortisol level improved.

After my cortisol level improved, my exercise tolerance and recovery after exercise improved. Exercise intolerance and prolonged recovery times after exercise were my very first side effects from prednisone. According to my endocrinologist, the improvement in my exercise tolerance and recovery after exercise is a clear sign that my HPA axis has recovered and is now producing cortisol at healthy levels again.

It took me more than 12 years to taper off prednisone but I have now come full circle. I don't have overwhelming fatigue anymore.

Thank you to all. I think since we're so close to being off pred, my husband should take dr advice and wean down this little bit of 1/2 mg. to -0- At least for him he did have a year of no pred and no pain. Maybe this will happen again. Our prayer is that it won't come back and his fatigue will subside. On the "lighter side" of things, I just noticed in our title, that I spelled fatigue incorrectly.... I used a 'q' I guess no spelling teachers out there today. 🙂
Bless you all.

I was diagnosed with GCA and PMR about 15 months ago. I am currently taking weekly Actemra injections, but I finished prednisone about 5 weeks ago. I didn't have any problems tapering prednisone down to zero, but starting with the second week I was off prednisone, I started having problems with fatigue, sleep, and mood swings. Doing the same amount of exercise and physical activity that I have been doing all along can wipe me out for a day or even several days. My emotions vary between depression, irritability, anger, and just feeling flat and wiped out. From my research it sounds like I have prednisone withdrawal. Your husband is probably going through the same thing I am. I've read that the symptoms can continue for a long time, like several months to a year, depending on the person's dose of prednisone and how long they took it. I was on a high dose due to GCA.

I had a slow taper was on Pred for a year. When I finished the Pred over the course of about a month I felt myself slowly bouncing back out of some low I did not realize I was in. exercise makes a big difference for me. Cheers

I too am just coming off Prednisone and have weekly injections of Actemra..in January a blood test showed I had a very low A1C …but there was no follow up …after extreme fatigue, dizziness/ light headed feeling muscle pain and heart palpitations I went to GP last week …he got me a glucose monitor I wear all the time and it showed I am Hypoglycaemic …I’m fine during the day but at night my glucose levels dip very low …I believe this is a well known side effect of Actemra…I can’t believe it was missed in me …now I drink apple juice during the night and am feeling so much better already ..not sure what this means for continuing on Actemra but I suggest to everyone on it to check A1C levels …my regular glucose levels during the day were fine so you need specific testing !