Feelings when tapering: My journey

I agree with Metz ... that is impressive. Prednisone withdrawal symptoms are caused by "insufficient cortisol."

It just occurred to me that insufficient cortisol describes the problem better than "adrenal insufficiency." An actual problem with the adrenal glands doesn't happen very often.

"To help prevent prednisone withdrawal, a person can take the following precautions while using prednisone and during the taper period afterward:
1) stick to the recommended dosage and not take more than the doctor prescribes
2) taper the dose according to the doctor’s instructions
3) avoid suddenly stopping prednisone treatment

When a person first starts decreasing the amount of prednisone, they may experience aching or tiredness. This is common. However, they should contact a doctor if these symptoms do not resolve over 7 days."
https://www.medicalnewstoday.com/articles/322536
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Maybe if more people followed the above guidelines, they would have the success that you are having.

I believe it is just something to get used to. We are all different, but in doing research and reading everything I can get my hands on, some pain and discomfort are to expected while (whilst -for your benefit) tapering are to be expected.

If at any point the pain becomes intolerable, I up my Prednisone .5mg. Luckily, I've only had to do that once.

Take your time and taper at your own pace. Wishing you an easy journey.

That is a very good question.

My cortisol level improved after 6 months. I was able to stay on a prednisone dose of 3 mg or below because of Actemra (tocilizumab). PMR seemed to be well controlled or at least I kept telling myself PMR was controlled.

My cortisol level wasn't checked very often. It was an 8 a.m. cortisol level that was checked as a baseline. For my cortisol level to be accurate, I couldn't take prednisone for 48 hours.

The first time my cortisol level was checked it was low so I was told to stay on 3 mg of Prednisone.

The second time was 3 months later and my cortisol level was somewhat better. My endocrinologist said the improvement was "encouaging" but my cortisol level was still on the low side.

The third time was at 6 months. My endocrinologist said I had an "adequate" cortisol level. This was when we had a long talk about stopping Prednisone. My endocrinolgist was more concerned about my symptoms rather than my cortisol level. I didn't feel well but I didn't think PMR was the problem.

My endocrinologist didn't know what would happen if I stopped Prednisone. She said having one adequate cortisol level didn't mean it would be adequate all the time. She said the body needs different amounts of cortisol hour by hour so there was no guarantee my cortisol level would be adequate every day after I stopped taking Prednisone.

We agreed that I could probably stop taking Prednisone but I could take Prednisone again "for any reason if I felt the need." My endocrinologist said she would prefer that I tell her before I took Prednisone but I wasn't required to tell her first. She just wanted to know if I had to take Prednisone again.

I needed prednisone again for a short period of time. I actually needed 60 mg of Prednisone and Actemra was stopped. I had a flare of uveitis so it wasn't PMR. I was able to taper off prednisone quickly again after Actemra was restarted. This happened over a period of 3-4 months. When it was time to discontinue Prednisone a second time, my cortisol level was still adequate.

A year later was when I actually started to feel better. My exercise tolerance was improving and my recovery time after exercise was much better. My exercise sessions didn't knock me out anymore.

I'm 20 years older from the time I was first diagnosed with PMR. I'm not able to do what I used to do because of some other limitations. PMR is NOT my limitation and I don't think I have PMR anymore. I'm not "pain free" and I'm not sure what that would feel like anymore. The pain is well within my tolerance level. Realistically, the pain is probably as good as it will get. When my rheumatologist asks me about pain I say "no pain" but I don't think she believes me. Ironically, she says Actemra isn't a pain medication ... it only treats the inflammation. The inflammation was "negligible" according to my last set of inflammation markers.

Very enlightening, thanks. I found your comment, "body needs different amounts of cortisol hour by hour" helpful, as I do find that at different times of the day I feel more energized than at others.
I do appreciate your feedback. Good luck on your journey.

Maybe the following will explain it better than I can. There is a 24-hour circadian rhythm to circulating cortisol levels.
https://academic.oup.com/edrv/article/38/1/3/2959892
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There was no way my daily dose of Prednisone would ever duplicate this circadian rhythm.

I'm at 5 mg til Aug appt. No problem from 7 to 5 this time. Last two days I have gotten up in the morning with pain in my fingers. Finding it odd that whatever the cause, be it pmr, OA, cppd, inflammatory arthritis, humidity, it was fingers in both hands. I did hand exercises, took a Tylenol and the pain went away. I have been getting a little fatigued in the afternoon but a little caffeine seems to help.

Not necessarily something you need to get use to, because everyone responds differently to treatment. I contacted my Rheumatologist regarding taking Advil as needed, because I was also experiencing my pain returning. She said it would be okay if I took Advil, but not too often because that will cause other issues over time (GI, bleeding, bruising, ulcers in stomach, etc.). I found after I weaned down from 10 mg to 7.5, I had to take two Advil (I suffered with severe pain for 4 days before I gave in). The pain automatically subsided within an hour, and like you, I waited for the pain to return after the Advil started to wear off, but it never did. Only had to take one dose and it the did trick! The next time I went down from 7.5 to 5 mg, the same thing happened again. The pain was excruciating, but after 1 day of pain I took two Advil and the same thing happened again. That's how I could tell it probably wasn't the PMR flaring back up. From what I have read, (10) mg of Prednisone seems to be the trigger point for starting to feel not well, but I guess the question that really comes into play is: Is this your PMR reoccurring or is this a reaction to weaning off the Prednisone? I was put on 60 mg Prednisone for Giant Cell Arteritis (which I did not have thank God) in August, 2023, which is not a very long time considering what other people have gone through. Right now I'm down to 3 mg every other day and 2 mg in between which is considered a very slow weaning process. Also, if you taper too quick, you could have a relapse of PMR or just feel like heck from lowering your dose of Prednisone too quickly. Keep in mind also that over exercising or exercising too soon can cause a reocurance of PMR. We are trying to avoid any setbacks, right? Although we all would like to get better quick, I personally would rather take a longer time to wean off Prednisone instead of weaning faster and having to be put back on a higher dose. I hear so many stories about people who are in the weaning process and have to be put back on higher doses of Prednisone. Sometimes it can take months to wean back down, and in extreme cases it can take years. I feel so bad for those people. I wish there was a set protocol that everyone could follow and that would work for almost everyone. Unfortunately, that is not the case. It also sounds like your getting a bit anxious about your symptoms returning. I know it's not easy, but try to relax. That also can cause a flare up of PMR.......anxiety is a big proponent. Remember, all of us are in this together!

I had heard and read that it can take a week to several months for your cortisol level to return to normal.

Not had any anxiety symptoms with Pred until yesterday. Started the new week on 9mg but after a few hours I felt a bit on edge. Cardio day at the gym but had to stop as I did not feel right. One of the women I train with asked if I was okay, I told her I just felt strange. We sat down together and she tried to help me by doing box breathing. After a couple of minutes I realised this was good old fight or flight and controlling my breathing was actually making it worse so chose flight and went home. This morning the anxious feeling started 30 minutes after taking my dose. Blood pressure normal but heart rate is a little higher then normal. Will just do weight training at the gym later and for cardio a few extra dog walks. Hopefully as I have realised this is just a bleep and will pass it will do just that and stop once my body is used to the new dose. Strange though that it has chosen now though.

You did not mention the rate at which you are tapering. Tapering too quickly can produce a variety of unwanted side effects.
I am now down to 3, tapering at 0.5 per month. Even at this liw dose, it is taking about a week after dropping a level to get back to feeling “normal”. Good luck.