Feelings when tapering: My journey

I had terrible fatigue from the prednisone, too. I wanted to sleep all the time. I finally started a daily multivitamin. It seemed to help, I had much better stamina and wasn’t sleepy all the time. At that time I was down to 5 mg.

My husband sleeps/dozes 75% of the day! Maybe the prednisone is responsible. He is also now on methotrexate as his PMR became more active with the reduction of prednisone. He also has GCA and is almost totally blind. He uses a cane because his blindness affects his balance. I will try adding multi vitamins to see if that helps. Millie , our dog, loves to sleep:snooze with dad - but then my husband is up and down all night. Fingers crossed vitamin helps!!!

@tiateacake, following your tapering experiences and feelings is a useful discussion point for many members. I merged your 3 recently started discussions into one so that people can follow your journey in one place:

- Feelings when tapering: My journey https://connect.mayoclinic.org/discussion/feelings-when-tapering/

I too recently was prescribed 40 mgs for 5 days with no taper. I actually posted a question here asking whether I’d have side effects from stopping 40 mgs so abruptly. The consensus here was I’d be fine and sure enough I was.

I guess the thinking is that 5 days is not long enough to completely shut down your adrenal glands, so no taper is necessary to wake them up. However, most pmr cases seem to require at least a couple of months of prednisone to chase the pmr away. At that point, your adrenals glands have shut down and need time to reawaken. That has been my experience anyway. Starting at 10mg, I am now at 1 to .5mg after a year. Only one minor flare that did not disrupt the plan. Good luck!

There is no reason why a person can't do a "fast taper" if you have been on 40 mg for only 5 days. I did this countless times for flares of another autoimmune disorder. I started with anywhere from 60 to 100 mg and took that for 5 days until I got the response I wanted. Then I would taper by 5 or 10 mg every day depending on how I felt. When everything went well, I was off Prednisone again in less than a month.

With all the hype that Prednisone can only be tapered slowly, people expect to be on prednisone for years when PMR is diagnosed. That is too much time and the adrenals do shut and it becomes harder and harder to taper off Prednisone.

Eventually treatment for PMR will evolve and Prednisone will only be used as a "bridge" to something equally as effective. A medication that doesn't suppress adrenal function is needed. For me, that medication was Actemra (tocilizumab) but it still necessitated a slow Prednisone taper of a year for my adrenal function to recover.

I shouldn't say "slow taper" because I quickly tapered to 3 mg after Actemra was started. Then I had to stay on a 3 mg "maintenance dose" of Prednisone for many months to offset my low cortisol level. This allowed my adrenals some room to operate.

To add insult to injury, my endocrinologist said I could simply stop Prednisone after my cortisol level improved. According to my endocrinologist, a 3 mg dose of prednisone was such a small dose there was no need to taper when my cortisol level was adequate. I could simply go to zero without tapering.

Don't attempt any of this at home ... medical supervision is required.

A "Prednisone bridge" to more effective treatment is how many autoimmune disorders are currently being treated. PMR has been slow to evolve since more effective treatment has never been found. Probably because nobody ever did the research and looked for an alternative treatment for PMR.