Reducing prednisone

Not sure if you actually should increase the amount of Prednisone so that your pain is less. That being said, check out healthunlocked.com for tapering schedules.

I'm in agreement with tillysam. You don't say how much Prednisone you are taking or how long you have been on that amount, but if you are still experiencing pain, the amount is probably too low. It anything, you should increase it until you are comfortable and then start tapering very slowly. Fifteen months after being diagnosed, I am now at 2.5 mg and planning on staying at that level for another month before I try 2 mg. It's disappointing that it has taken so long, but I flared four months ago at 2 mg and had to go back to 4 mg to get it under control. Don't think of it as a race to get off Prednisone. Take it slowly, Good luck.

I am in the process of tapering and am a bit concerned about my last phase (presently on 3 mg). healthunlocked.com recommends no more than 10% decrease each time, down to zero mg. My rhumatologist insists her patients do fine on 1mg decrease every 3 weeks when at 3mg. I'm so afraid of a "flare" so am worried. Anyone have experiences with their final stage of Prednisone taper that you might share?

I would say that the 10% is a good idea. However, I think your rheumatologist is also correct that her patients do fine with a 1 mg decrease every 3 weeks.

I worried more about a flare whenever I got below 10 mg. I think 10% at a time is a good idea but when you get below 5 mg, a 10% reduction isn't very much. You would have to cut a 1 mg tablet in half which isn't that easy to do. There isn't a good way to make sure it is actually .5 mg. When at 2.5 mg you would only reduce by .25 mg which gets even harder to do.

My rheumatologist turned things over to an endocrinologist when I got down to 3 mg. An endocrinologist was able to interpret my a.m. cortisol levels and evaluated my associated symptoms. The endocrinologist deferred to my rheumatologist to get my PMR symptoms under control so that I could get down to 3 mg. Those two doctors were communicating with each other.

I was taking another medication that made it easier to taper down to 3 mg. My rheumatologist didn't want me to taper any lower than 3 mg until I saw the endocrinologist.

My cortisol level was low so I needed to stay at 3 mg for a few months. I did some trial tapers by doing a 3 mg-2 mg- 1 mg daily taper and stayed at zero for a day or two before going back to 3 mg again. I would then repeat the 3 mg - 2 mg - 1 mg taper again. It was a slow process but it gave me some confidence that I could come off prednisone.

I reported what I was doing to my endocrinologist. I didn't notice my symptoms were getting worse so my endocrinologist was encouraged that I wouldn't need a maintenance dose of prednisone for the rest of my life.

Eventually, my endocrinologist gave me the green light to stop prednisone when my cortisol level was "adequate." My endocrinologist said to go from 3 mg to zero in one step but I did the 3 mg - 2 mg - 1 mg taper again and was able to get off prednisone for a week.

I should add that my endocrinologist made it clear that I could go back on prednisone for any reason if I felt the need. There was a need when I was off prednisone for a week the first time and I had to go back on prednisone. I ended up being on 10 mg again.

After some adjustments were made, I tried to taper off again. I tapered down by 1 mg every couple of weeks and got off prednisone successfully the second time.

Your experience is sooo helpful. From 3mg. I am due tomorrow to go to 2mg. for the next 3 weeks. I requested a cortisol test on next week’s lab visit and she said she doesn’t typically do that, but will at my request! I am anxious to see if adrenals are beginning a stutter-start. However I am so afraid of a flair.

One thing I learned was there isn't any "correct way" of tapering off prednisone. I took prednisone for 12 years before I found a way.

I had a good partnership with my rheumatologist for all 12 years. She didn't always like what I did but she didn't ever blame me for doing something wrong. I wanted to be off prednisone as much as she wanted me off. We tried everything until something finally clicked.

Just be aware that getting off prednisone is never easy. I personally believe that most of my problems were adrenal related. After a couple of years of PMR, I was never certain that PMR was the only problem.

I still had adrenal insufficiency symptoms for a long time after getting off prednisone. My cortisol level was only "adequate" some of the time.

It is a personal thing. I really like the tapering schedules of healthunlocked.com. So far, it has been working nicely for me. Slow and steady.
The best to you.

You are so right about splitting the 1 mg tablets. I did that off and on for the last six months going back and forth between 1 mg and 1/2 mg for my first time with PMR. It wasn't exact but I finally was able to taper off. I did buy a few different pill splitters before I finally figured out their is a scoring line on the tablet to line up under the splitter but it didn't make much difference.

I think the precision for some of the tapering methods I have seen are great if anyone cares to try them. However, they really should make those 1 mg tablets bigger. I'm a believer in whatever works and to each their own when it comes to tapering prednisone.

I was in a rush to take my pills so I wasn't as careful as I should have been. Those 1 mg tablets had a way of escaping my mouth so I would find them on the floor, on the counter and all over the place. Losing a 1 mg tablet here and there didn't seem to make too much of a difference!

Something similar happened when I changed doses during the week. I would lose track of what day it was so I would just take the same dose for the entire week unless something noteworthy happened.

I used a weekly dose organizer for all my medications --- the ones with the little plastic doors to open and close to keep the medications from getting mixed up. At the end of the week, I would make sure all the doors were closed and shake the whole container. Invariably, I would hear something rattle inside and it always seemed like a 1 mg tablet of prednisone was hiding inside one of the little compartments.`