Better to be in some pain or better to up the dose of prednisone?

From what I know your body creates 7.5 mg of cortisol through the adrenals. Once you hit 7 mg if your adrenals dont kick in- and they might well not - that’s the trip up. Sluggish adrenals make tapering tough. Maybe try something else to help w pain. I found tramadol w tylenol helpful for the short term.

I have been off prednisone for several years now. I took prednisone for 12 years and you are absolutely correct --- I had a low cortisol level for about a year and I couldn't get off prednisone until my cortisol level improved.

I agree that the symptoms of a low cortisol level usually begins at roughly the equivalent of 7 mg of prednisone per day. Symptoms worsen as the prednisone dose is lowered if the adrenals don't increase the production of cortisol in a timely manner.

The problem is --- we need to be on a dose lower than 7 mg for the adrenals to get a strong message to produce more cortisol. My endocrinologist said I needed to be on 3 mg of prednisone for an extended period of time for my adrenals to get the message loud and clear that there wasn't enough circulating cortisol. A low cortisol level will prompt the HPA axis to do its thing so that the adrenals will produce more cortisol.
https://my.clevelandclinic.org/health/body/hypothalamic-pituitary-adrenal-hpa-axis
----------------------------
You are correct to say that the response of the adrenals will be sluggish and might not respond after long term prednisone use. Most of the time the adrenals do respond if given enough time.

Do you have any idea what might help prod the adrenals to produce more cortisol? I’ve read Vit. B12 might be helpful and exercise. I’m so fatigued in the afternoons. I’m down-to 5 mg. - on Pred for 14 months so far. I’m also going to try the precursers to NAD in a supplement for energy. I wish my Drs were helpful with this transition but they don’t seem to have any advice or supplement suggestions other than sleep, mild exercise and eating right. It’s been a lonely frustrating 14 months. Nice to have this group.

I started at 25mg. in December and was going down once per month till two months ago, when I was told to go down by 1 mg every two weeks instead. Ten days ago, with no problems I went down from 8 mg to 7 mg. Now for the first time I am waking up with painful and stiff right wrist and arm nearly to shoulder, some pain in hips and between shoulder blades. I had acupuncture in the shoulder a week ago and all of the pain vanished for a week. Here is my question: The rheumy said to call him if I had a flare-up and we'd discuss going back to the higher dose. But I am unsure of what consists of a flare-up. How severe does the pain have to be to call it a flare-up? After I get up in the AM, have coffee, breakfast and do my chores, by 9 AM the pain is nearly all gone for the rest of the day. It stays away till about 9 PM before I can feel it creeping back. Would a flare-up also do this, or am I not gauging things the right way? So, its just that before I call him, and I will if I must, I really want to know more about how one would describe a flare-up, is it any creaks and pains when you've had none heretofore, from going down to the lower dose? Or is a flare -up defined as being as severe, or nearly as severe, as what you came in for in the first place? Anyone who can help me define this, I will be grateful. Thanks. I would rather live with some pain and reduced dosage than have to go back up again.

I got really tired of pain while going almost a year without my PMR and GCA being diagnosed (I never went to a doctor). I was treating it with acetaminophen, and it didn't help much. I haven't had any pain at all in 9 months since I started treatment (prednisone and Actemra), and that has been extremely enjoyable. I'm currently at 5 mg prednisone to go with weekly Actemra injections, and I'm feeling really good. The side effects from the prednisone have decreased quite a bit. My cholesterol has come down, and I've started losing the small amount of weight I gained and the moon face.

Reducing by 1mg every two weeks is a fast taper, more likely to bring on a flare. A flare is a return of PMR inflammation and pain. After each reduction, some slight pain which passes within a week or so is common. But pain which gradually - or suddenly for some people - gets worse and doesn't resolve is a flare.

The Australian guide for reducing prednisolone/prednisone (under 10mg) is to reduce by 1mg every 4 - 8 weeks. The slow taper is to keep inflammation controlled consistently and long enough for the PMR to resolve, and to avoid steroid withdrawal.

At doses below 4-6mg (the amount of cortisol the body normally produces) adrenal insufficiency can become an issue for some people. At doses higher than that, the return of pain is more likely to be from the PMR re-emerging or from steroid withdrawal from reducing too quickly.

The aim is to keep inflammation and pain controlled consistently as we reduce dose. Your chances of achieving that while reducing at 1mg every two weeks are slim. Swinging up and down in dose in response to flares from reducing too quickly can result in a higher cumulative dose than reducing slowly and steadily, so fast reductions can be counterproductive.

When did you start the Kevzara injections?

How long has PMR been treated with prednisone?
-----------------------------
A couple of things to remember ... Kevzara and other biologics take time to work. When I started Actemra injections ... my rheumatologist said I needed to give Actemra at least 3 months to work. I noticed an improvement after 3 months but I wasn't certain that Actemra was working.

The longer you have taken Prednisone ... the longer it will take to taper off Prednisone. This is because of how prednisone suppresses the production of cortisol by the adrenal glands. Adrenal suppression is why it is so difficult to predict how soon you will be able to taper off Prednisone completely. Low doses of Prednisone is where the tapering process becomes very tricky.
https://www.droracle.ai/articles/19822/is-prednisone-5mg-adrenal-suppressive
--------------------------
In my case, I took prednisone for 12 years so it took me the better part of a year to get off Prednisone after Actemra was initiated. I was reasonably certain that PMR was controlled by Actemra after 3 months.

It took another 9 months for an endocrinologist to say my cortisol level was adequate. I had to stay on 3 mg of Prednisone for an extended period of time while my adrenal function was "sluggish." My endocrinologist said 3 mg of prednisone was a good "maintenance dose" for someone with adrenal insufficiency.

Based on the residual pain and discomfort that I attributed to adrenal insufficiency, I wasn't totally convinced that my cortisol level was adequate for at least 2 years after my first dose of Actemra. I had to resist the urge to take Prednisone again but I wasn't prevented from taking Prednisone again if I "felt the need."

I have been on prednisone for over a year. I started on Kevzara in January The doctor told me if the pain returns to a level I can't take, then we go back on the prednisone. I'm going to try to stay off and see how I do with only the Kevzara....we will see

I'm assuming when the pain stops but not sure. I read where PMR can be cured but I have had for over 2 years and I'm not sure if that's normal. It took 6 doctors to figure out what I had. I have degenerative discs in my neck and a bone spur so that complicated the diagnosis. Honestly, not sure how much the Kevzara helps because I have been on the prednisone at the same time. Will let you all know in September