Prednisone tapering: How did you do it pain free?

@jabrown0407
My Free Kappa Lt Chains (143.7) and kappa lambda ratio (8.21) have been way off the charts from the very beginning. I see a hematologist next week for that. 25mg prednisone doesn't fully relieve the pain in my shoulders but I'm okay with that until I find out what else is going on.

@kjoed53
From the beginning meaning before I started prednisone

@tweetypie13 my rheumatologist is the one who told me go down 1mg per week. I felt that was too quick. Ill stay at 14.5 for a few weeks. Thank you!

@kjoed53 I totally understand and I can tell you I had more blood factors out of the normal range than I had in the normal range for longer than I care to remember. It was scary as well as being frustrating because so many doctors would run additional tests and tell me the problem was not in their wheelhouse. We spent months chasing down MGUS only to have a local MGUS specialist at a teaching hospital explain why it was not MGUS. That alone took 6 months.

@mech Remind yourself, you are your own best advocate
If not doing it, best to keep a daily journal of pain level, meds, activity. Also temps and humidity if those affect you.
That really helps with decisions. 😎

@jabrown0407 and all... Thanks for the suggestions. I have serious sleep apnea and sleep on a wedge pillow using a Bipap and O2 at night. And now often during the day for breathing comfort. I have elevated my feet often - it helps some and feels wonderful. I also at times put my legs over a foam cube pillow you can now buy, I had mine made years ago before they were available, and relieve my back/hips/leg/feet pain. I drop off to sleep almost instantly when I use that cube it relieves the pain so well.

I also use a weighted blanket for RLS and anxiety. It is a Godsend! Even in Florida with the hot/warm year round weather I use the weighted blanket, 15 lb, year round, just keep it cooler in the house. It's uncomfortable to have my feet on a pillow under the weighted blanket. It causes more toe/foot pain as it presses on the feet too much. So, I choose.

I know when I can lose these extra pounds the swelling will improve dramatically. Hopefully that will happen in the next several months as I use Mounjara added to my insulin routine for diabetes control. It's amazing how the Mounjara helps the insulin to level out, even on Prednisone which causes glucose to spike terribly. My diabetes is caused by Prednisone and reacts adversely to every mg of that drug. Mounjaro works to level it all out and I use much less insulin. So far no weight loss though.

I took Oxympic for a year or so for diabetes control. It did a great job, my A1C was down to 5.1. I lost about 2-3 pounds, not on it for weight loss... But I had a complete, extreme allergic reaction to Oxympic last year that caused me to have every side effect it lists on it's websight! I was a very sick woman suddenly. Lost muscle use, weakened drastically, headaches, increased body pain, and more. Then, ended in the hospital ER with coma high glucose and thus 2025 horrors began.

I discussed the Mounjaro carefully with my Endocronologist and researched it myself before agreeing to the med. It is so far doing a good job with no ill effects. It works differently and is well tested as well... I'm watching closely!

Blessings, Elizabeth

@jabrown0407
I've been lucky so far in that each doctor in succession has referred me to a friend or someone within their professional circle of contacts. My longest wait has a been the three weeks I'm waiting to see a hematologist.

@tweetypie13 thank you so much!

@kjoed53 My specialist were also personal or professional friends of the referring doctor. It was a case of PMR inflammation being the root cause of 99%of the blood factor problems plus I also had asymptomatic Giant Cell that was not found for 6+ years. That took 4 Rheumy's. Inflammation is naughty. I have recently discovered that inflammation can be the cause of more inflammation. So inflammation can be the result of something as well as the cause of more inflammation. Vicious circle.

@jabrown0407
There's probably more unknowns than knowns with PMR. I think it's an umbrella diagnosis that involves multiple similar but different disorders that can't be separated because there is no singular test to diagnose any of them. If it's inflammation with an unknown cause and reacts positively to prednisone then it's labeled PMR, even though we all present differently, react differently and heal differently.