Just diagnosed and still hurt in am with 20 mg

Sorry, I mistakenly replied to the wrong person. My previous comment was to @obxpoppop

I just found this article in the Medical Journal of Australia (MJA) while waiting for midnight ... Happy New Year!

Glucocorticoid‐induced adrenal suppression: physiological basis and strategies for glucocorticoid weaning.

What do you think? I remembered you were from Australia.

As for splitting your prednisone dose, I can confirm it worked for me. I had the advantage of being able to see the inflammation inside my eye because of uveitis.

It was strange how I could see some improvement by the evening when I took my entire prednisone dose in the morning. Inevitably the inflammation got worse overnight. Sometimes the inflammation that occurred overnight was much worse than the previous morning and I needed to increase my prednisone dose.

The opposite happened when I spit my dose. The improvement that happened by evening was sustained overnight when I took a small amount of prednisone in the evening. By the time I woke up the next morning, the inflammation was better than it was the evening before. My eye inflammation was markedly improved compared to the morning before.

This is mostly anecdotal evidence compared to empirical evidence. My ophthalmologist agreed and said whatever I was doing -- he could see the difference too.

I did the same for PMR and it worked at higher doses but not so much at lower doses. I was on prednisone for a long time for PMR. I was tired of waking up every morning in pain and splitting my dose spared me most of the morning pain.

With uveitis, I could go from 60 mg to zero in less than a month. I didn't need to take prednisone too long to achieve remission of uveitis.

Splitting your dose for PMR/GCA may only work at higher doses of prednisone. When I got down to the physiological dose of prednisone (approx. 7 mg) nothing worked well. I just needed a different medication that didn't suppress my adrenal function and then I was able to taper off prednisone rather quickly after that.

Good reminders in that link to keep an eye out and act on possible adrenal insufficiency from now on, thank you. I'm currently at 6mg (4.5mg morning + 1.5mg evening) which is approaching the dose at which adrenal insufficiency is experienced, if it will be, between 4 - 6mg.

They used to say the physiological dose was around 7.5mg, but now say it is closer to 5mg. Having read a lot on this forum, the two points at which an awful lot of people come unstuck are 7-8mg and 4-5mg, way more often than chance.

Please be careful on the dose you are taking. It is a balancing act and any amount of excess stress can cause you to lose your balance.

"They used to say the physiological dose was around 7.5 mg, but now say it is closer to 5 mg. Having read a lot on this forum, the two points at which an awful lot of people come unstuck are 7-8 mg and 4-5 mg, way more often than chance."

Yes ... I would agree with this. Interestingly, that was what I experienced when I tapered off prednisone with help from Actemra. Before I even started Actemra, my rheumatologist wanted me to taper my prednisone dose as low as possible to see where my lowest effective dose was. It was 7 mg when I started to feel the familiar aches and pains. I stayed on 7 mg as long as I could but I had to bounce back to 10 mg when the pain worsened. I knew this would happen because I duplicated it countless times. My rheumatologist said 7 mg wasn't acceptable and wanted me on 3 mg.

When Actemra was introduced to me, I tapered cautiously from 10 mg to 7 mg in 3 months. I didn't experience the aches and pain like before. I decided to taper by 1 mg per week from 7 mg to 3 mg only because I wanted to test whether or not Actemra was working. When I easily reached 3 mg, I thought it was a good idea to tell my rheumatologist. I didn't feel well on 3 mg and I distinctly remember dizzy spells and black outs. I reported my symptoms and my rheumatologist wanted me to stop tapering. That was the first and only time a doctor ever told me to stop tapering. It was always increase my dose and try to taper again.

My cortisol level was checked via an a.m. cortisol level test. My cortisol level was low but not dangerously low. I was told to stay on 3 mg indefinitely until I could be evaluated by an endocrinologist. My visit with the endocrinologist happened months later so "technically" I was stuck on 3 mg for a long time.

My endocrinologist monitored my cortisol level for a while longer. I "experimented" with fast tapers from 3 mg to zero for a day or two before returning to 3 mg. In general, I didn't feel any different on zero prednisone compared to 3 mg. I conveyed this information to my endocrinologist at my next visit. She didn't know if it would be safe to stop prednisone or not.

It is a long story but I "took the plunge" and went to zero prednisone. That's when uveitis flared up and I was back on 60 mg again. A uveitis specialist was consulted. and she stopped Actemra and said Humira was optimal for uveitis. I was in a familiar territory treating uveitis so I quickly tapered back to 15 mg when the aches and pains returned. My rheumatologist said I needed to give Humira a chance to work so it was 3 or 4 months before we ditched Humira.

Actemra was restarted and I was able to taper my prednisone dose from 15 mg back to zero prednisone a couple of months later.

I was started on 20. That was not effective, so my doc increased the dose to 30 after 4 days. That worked. Pain was eliminated. Tapering was started almost immediately, at 5 every two weeks. Now on 10, and very minor wrist and thumb pain appears in the morning, all pain gone by 1300. Will now do new labs in order to develop the appropriate plan for the future. Good luck.

Read about the anti-inflammatory diet as you wean down. I have taken DHEA 25 mg OTC since I got off
prednisone. My family practitioner and rheumatologist
have no problems with that. Take your vitamin D and
antacids. A cardiac risk assessment is worthwhile if
our inflammatory markers remain elevated.
When I fall off the diet or have more than one drink socially I realize the diet works. I use my hand exercise ball in the car and keep active. Work that management plan in 2024.👍🏼

You definitely should be referred to a Rheumatologist. My PCP referred me right away, and the only one taking new patients is scheduling first available in February. I made the appointment right after Thanksgiving.

I'm currently on Prednisone every other day - 30mgs. I'm like Dr. Jekyll, "Mrs". Hyde. The off days are agonizing. I think he prescribed it that way in order for my body to keep producing its own cortisol.

Good luck to us all. I keep telling myself that this too shall pass.

Here is the British version similar to the Australian version.
British:
https://bpspubs.onlinelibrary.wiley.com/doi/10.1111/bcp.14679
Australian:
https://www.mja.com.au/journal/2023/219/10/glucocorticoid-induced-adrenal-suppression-physiological-basis-and-strategies

Yes it it were me I would definitely want to go to a rheumatologist who has a good reputation! Each of us is different and what works for one person may not work for another person there is no magic formula out there the doctor does whatever they feel is the right thing to do for you. My rheumatologist does not believe in high doses of prednisone because of the many side effects from taking prednisone. For me whenever I do take prednisone I always have pain in the morning I’m kind of used to it. I know that as the day goes on I feel better and better! I also learned that exercising gently helps the pain go away faster! wishing you the very very best!!!

I was put on 10mg to start with little effect. I asked the rheumatologist if we should increase the dose. He said to wait a little longer and within a couple of weeks all the pain was gone. I was glad not to have to go up and have a longer taper. But everyone is different…