Anyone have discomfort or pain when tapering off prednisone?

Let me send you a clip from Dadcue on this site. He is a true survivor and understands better than me. Most of my longer term experience comes from my wife who I am the caretaker.

Corticosteroids have the effect of suppressing the anterior portion of the Pituitary gland with resultant cessation/disruption of the Pituitary gland in secreting that hormone ACTH. ACTH is the hormone that communicates with the adrenal glands via a negative feedback loop in regulating the production of cortisol. Cortisol is a life essential hormone produced by the adrenal glands. Cortisol is necessary at a cellular level for every cell in the body for basic physiological functioning. Cortisol is also the body’s primary anti-inflammatory reagent.

Prednisone is never discontinued abruptly when (dosage of 5 mg or greater for 2 weeks or longer) for the reason of steroid induced Pituitary suppression. A slow and gradual taper is necessitated to ensure that the Pituitary gland can be coaxed back into function. Not all Pituitary glands are able to successfully “re-boot.” Some Pituitary glands will remain forever suppressed and at a physiological standstill. The longer the duration of continued use of prednisone the higher the risk of acquired secondary AI(Adrenal Insufficiency). Likewise, the higher the dose of prednisone over time the higher the risk of acquiring secondary AI.

Each step down titration in dose is done with the purpose of lowering the blood serum level of circulating cortisol to an uncomfortable level (eliciting symptoms of low cortisol - nausea, severe muscle/joint pain, diarrhea, low blood pressure, low appetite, chills/sweats). Each step down titration in dose is meant to coax the Pituitary gland to “awaken” from its suppressed/retired state. The longer you have been on prednisone would be a negative prognosticator for a successful Pituitary reboot. Most likely, you will need to remain on a replacement level of corticosteroid (hydrocortisone is preferred) for life. You will need to take daily medication to provide for corticosteroid normally produced by the adrenal glands.

If I understand you correctly your taking 4mg Dexamethasone(DEX)

Yes I am also going through strange new pains in left arm as I taper off Prednisone and I have furiously been trying to research the cause.
I finally had X-ray done this week waiting for results but I suspect I will need MRI in order to see the muscle/tendons. . I did not do anything physical to cause this.
My gut tells me it’s a steroid damage side effect but I can’t find anything online confirming this.
It would be great if someone knew something about this
I am seeing a lot of similar posts from other steroid users.

I developed a right frozen shoulder, as they call it, after I went off prednisone. It added to the stiffness as per the excellent overview of withdrawal by @tuckerp below. I read many posts about not tolerating pain and stiffness but I think you have to, as long as it is manageable and not at all debilitating like full on PMR, if you want to avoid permanent damage from the drug. Six months after I am still improving. My right shoulder has been getting more open and usable from Pilates and swimming. The stiffness is variable. Some days very good legs and other days stiff and vice versa for arms and shoulders. Never good together! But it is a slow improvement. The dreadful fatigue seems to have almost fully lifted so my body must be getting better. I have emerged with an intolerance of eggs though.

If you're in pain, you shouldn't be tapering. The objective is not a relentless drive to zero prednisone though we'd all like to be off the stuff. The objective is to find the lowest dose where you get the same relief you initially got when you started prednisone. Your body dictates the taper, not an artificial schedule. We try to reduce slowly , but if the pain increases you've gone too low. Inflammation will just continue to accumulate and you'll have a flare. 12.5 may be too low for you right now. If you go back to where you last felt good, you can stabilize and then try again with a slower reduction.

Yes. I was originally at 60 mgs of Prednisone last September for possible GCA along with PMR. Test results came back less likely to have it so they immediately stated to taper me off the meds and now I'm down to 3 mgs. Unfortunately, some of my symptoms are returning:
Fatigue at times
Persistent cough and clearing of throat (a lot)
Out of Breath a few times which I haven't had since last September
Feeling that I cannot take in enough air almost like a gasp
Some inflammation again throughout my body - swelling in legs, arms, internally, etc. but nothing so drastic that would raise alarm. Just causes stiffness and pressure.
Stiffness
Pain in my shoulders and neck
(Dry Eyes and mouth which never went away)
Light Sensitivity sometimes
My blood work came back and my IGG4, Complement C3, and ACE levels are above the range (higher than they should be), but my Sedimentation Rate is right smack in the middle of the scale which is good; it was high before. I've been diagnosed with PMR, however, now I wonder if this could possibly be Schogren's or IGG4 disease, etc. I'm not the type of person to worry but I'm definitely questioning if this is PMR or if this is something else in addition to PMR. What are your thoughts? Also, my doctor wants to put me on Kevzara and I'll be seeing her next Wednesday. Anyone on that med let me know how you're doing with it!

I couldn’t get below 7.5 continued to taper from 5 to 1 overv10 months then finally after almost 2 yrs stopped . My pelvic girdle issue resolved but still have pain myalgia, tendinitis, and arthralgia could just be adrenals slow to wake up . Trying Tylenol. Morning is the worst

I couldn’t get below 7.5 continued to taper from 5 to 1 overv10 months then finally after almost 2 yrs stopped . My pelvic girdle issue resolved but still have pain myalgia, tendinitis, and arthralgia could just be adrenals slow to wake up . Trying Tylenol. Morning is the worst

I haven't heard of dexamethason but I will google it. I know I have to get off prednisone because of my osteoporosis. I think my dr doesn't really care that I'm in pain. I will still keep taking my Tylenol arthritis and using a heating pad.