A few days ago a person was wishing to hear about people who are now in the 0 Predisone Club. At this point I feel that I can tell you about my personal experience. You will have to look on my profile to hear about how it started and how BAD it was. I have been off Prednisone for about 10 days now.
I started at 20 mg for a couple of weeks and then down to 15 mg. I went faster than my Rheumy had suggested and if I felt ok I would drop some more. I kept forging ahead and had one flare at 7 mg. at about 3 months along and then went to 10 for a couple of weeks and then continued going down by 1/2 mg. every 10 days depending on how I felt thereafter until I got to 3 and then went down by 1/4 mg a week to zero. IT WASN'T EASY as I had pain and soreness and fatigue continually but yes my whole goal was to get off of Prednisone before I got a co-morbidity from it. I know that this will make a lot of ladies on here's hair stand up on end, but do you want the truth or not?
I turned to God knowing that he was in control of my future and felt he allowed me to suffer this disease to wake me up to the fact that I was putting him on a shelf in my life instead of communing with him daily. When you are put on your back you look up.
My PMR beginning date was March 22, 2019 and I had weened off by November 24th 2019. Almost exactly 8 months! NOT BAD if I say so myself.
The last 2 weeks I have had SEVERE EXHAUSTION day and night without sleeping well and I thought it must be my adrenals. For 3 days I barely got out of bed! I have a finger oximeter that measures heart rate and oxygen and shows the zig zag heart beats on a little graph. I put it on and it was beeping because my heart beats were below 50 per minute. Bradycardia. I also was feeling like my heart was fluttering and skipping a beat now and then! My oxygen seemed to be holding though even with such a slow heart. It was like this for 4 days so I got depressed and prayed some more. I rested a lot and made an appointment with the GP. She was going to order me a heart moniter to wear and get me a synacthen test. Long story short before I got this heart monitor or the synacthen test my heart rate went up and I stopped feeling the skipped beats. I am feeling energetic and GOOD and so I am overjoyed!
One more note, I did exercise (walk mostly) during this whole ordeal whenever I could and lately I am even able to do some of the tough exercise tapes that I used to do. My figure is almost back and I might even get myself a little botox and some new clothes. I am saying all of this to let you know that you can have a TOTAL comeback. Oh sure I could have a relapse but I am going to live without fear daily thinking about it. I will post in a while with any updates and I am praying for all of you to get through this too. God Bless