How to wean off prednisone 5mg without side effects?

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.

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?

Whenever someone says back surgery that gets my attention. Why did you need that? That truly introduces other things that could be happening. Sudden onset extreme back pain only during the night was why I took Prednisone initially about 40 years ago. I'm surprised anyone believed me because I could hardly believe it myself.

Now my entire spine is a disaster area. I need a multi-level lumbar fusion the most and that surgery is "pending."

At one stage, the surgeon said I wasn't a good surgical candidate for major back surgery because of Prednisone.

Now that I'm off Prednisone, the surgeon says surgery might not help.

An emergency MRI about 10 years ago revealed a major problem. I was insisting that "I didn't know that I had a bad back because Prednisone relieved all the pain."

I was diagnosed with inflammatory arthritis about 25 years before PMR was diagnosed.

Now my rheumatologist says I have a "full range of rheumatology conditions."

After "decades of Prednisone use" it is clear to me that Prednisone was masking many things. Prednisone never solved anything but it did reduce "systemic inflammation."

"Prednisone activates my atrial fibrillation unfortunately."
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Some people insist that their autoimmune inflammation activates a-fib. I think what you say is more plausible but I don't have a-fib fortunately. There is more research that says a-fib is another side effect of Prednisone.

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.

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?

Your symptoms sound like adrenal insufficiency to me. Adrenal insufficiency doesn't need to be caused by Prednisone. There are underlying autoimmune conditions that attack the adrenals or thyroid and other things which cause havoc on your endocrine system. These conditions can be insidious and symptoms wax and wane depending on the day.

There is no "normal level of cortisol" there is only a "normal range" but that range is variable and depends on the circumstances.

Google artificial intelligence agrees:
This statement is accurate; while a "normal range" for cortisol exists, it is not a fixed number, and can fluctuate depending on factors like time of day, stress levels, and individual variations, meaning there is no single "normal level" of cortisol.
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"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."
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I don't think modern medicine works this way. I'm a nurse too. I would sometimes feel guilty giving patients so many pills because I felt like I was contributing to their problem.

You aren't psychomatic but it is easy to be labeled as such. I was labeled as "noncompliant" by my very first rheumatologist. My very first primary care doctor said he thought I was a "crazy person" who wanted prednisone but later apologized for thinking that way.

@dadcue hi, why was I on prednisone for for so long? I got an autoimmune disease that nobody knew about. It caused lesions on my brain. The high doses of prednisone helped me to wake up and be a person again. I had lost so much in the 10 months before I was diagnosed. I could barely walk, had trouble eating, couldn’’t think straight. I ended up in rehab while i re—learned everything. I was discharged on 20mg of prednisone. Every time the doctors tried to lower the prednisone , all the lesions came back. I was really lucky. The only doctor who knew what was going on, worked at UCH in Denver, only 1 hour from me. Now she has me on rituxan every 6 months and Myfortic (works like prednisone but has none of the side effects. I’m doing well. It’s been a difficult 6 years, but worth it!

So sorry you had those experiences with those docs.
Sadly, it doesn’t surprise me one bit. You’re probably aware they called MS the “fakers disease “ for 30 years before they had tests to “prove” it. My brother complained of symptoms for years and the docs dismissed his symptoms until he ended up not being able to walk up a flight of stairs to his job. He went to a different neurologist who did an MRI and when he compared it to an old MRI done at a different facility he said I’m 99 % sure you have MS and it was clearly present on the MRI done 4 years ago. He did a spinal tap and it confirmed MS. Another brother complained of weakness in his legs and again his complaints were dismissed. A provider at the hospital actually accused him of “faking” not being able to walk when the nurse found him in the restroom (where he had literally crawled to avoid being incontinent when his call light went unanswered). The provider apologized profusely when his tests revealed Clear Cell Renal Cell Carcinoma with Mets to the Spine.
My husband was at Barnes Jewish Hospital in Saint Louis with a newly diagnosed Glioblastoma, was paralyzed on one side and aphasic and I heard a neuro resident in ICU ask him if he was sure he just didn’t want to talk because he was depressed! And they wonder why we don’t always trust their judgment. I’ve seen too much to take what they tell me as gospel. I have wondered if I might have an auto immune disease that has not been diagnosed but with each new symptom I’ve told them about or each test I’ve asked for it only adds to being labeled psychosomatic, anxious, overly concerned, etc.
I feel that being on the prednisone has muddied the waters for me, so to speak, in trying to figure out what on earth is at the root of all of this.
I had white matter lesions show on an MRI of my brain back in 2018 which they told me was most likely from my migraines. They did another brain MRI recently that they are now saying is most likely micro vascular disease because the white lesions have increased. When I looked up the description of the MRI results they are also consistent with MS, so who knows unless I have a spinal tap to rule that out. The good news is I’m not in a wheel chair, I can still breathe, and my pain is tolerable; still, I’d like some answers.

I’m sorry I didn’t really explain why I’m even on prednisone. I have been given bursts for asthma flares, acute sinusitis that turned into chronic sinusitis, bronchitis, the metapneumo virus. I do not have PMR but I came here in hopes of gaining some insight to getting off this horrible drug that has turned my life upside down. This time trying to come off is causing complete cold clammy body chills, headaches, extreme dizziness, extreme fatigue, to the point where I don’t feel like I have enough energy to take the next breath, nausea and joint and muscles aches. I literally feel like I belong in the hospital. My primary care said I shouldn’t be having these symptoms. The endocrinologist who I sought out myself to try to get to the bottom of what’s happening said to take 5 mg for 7 days then 2.5 for 7 days then none for 2 days then have an AM cortisol and ACTH level drawn. She said if the levels were normal I could stay off the prednisone. They were apparently normal but there was no way I could tolerate staying off of it so that’s when she put me on the 5mg/ 2.5 mg schedule every other day. I still don’t know if what I’m experiencing is withdrawal symptoms or adrenal insufficiency. The reason I say that is because I read that you can have a normal cortisol and ACTH level but if the pituitary isn’t functioning normally you can have adrenal insufficiency. I also read the only way to accurately rule out adrenal insufficiency is by doing an ACTH challenge test. When I mentioned this to the Endo she said she didn’t think that was necessary and felt that if I had adrenal insufficiency then I would not have had a normal cortisol and ACTH level after being off of the prednisone for 2 days. At this point I don’t even know what to think. So, tomorrow I start the new tapper.