Transplant: Has anyone tapered off prednisone after decades of use?

Hello @marilynredder2367 and welcome to Mayo Clinic Connect! Thank you for joining this discussion to share your experience with tapering off prednisone.

Can I ask how you have been monitoring your adrenal insufficiency throughout your process for new members like @lendalin @looperdolly and @tarmansbks to consider?

@guidant07 I congratulate you and @looperdolly both! My husband is a kidney recipient, a "baby" next to you at 5 years out from transplant. He is on 2.5mg per day of prednisone. Hardly a dose at all. He has been following this discussion closely, as he woud love to wean off any meds he can!
Gingert

I have to ask myself why indeed do I want to wean off. . I have R/A and don't want to take a biologic or infusion therapy. I guess the Medrol is the least damaging. My rheumatologist said I shouldn't be so apprehensive about taking it. I have postpolio sequelae and falling is a concern which I am managing because breaking a bone at my age is also a concern and I have osteopenia (two hip replacements). This is a good topic of interest to me and am glad for the participation. Thank you.

What kind of "pretty sick" do you experience if you don't mind sharing? Thank you.

I had read this article weeks ago. Mayo Clinic website is my "go to " for all things medical. Thank you for pointing it out again.

I have also been on prednisone for three years for Polymyalgia Rheumatica. The side effects are horrible even though it is a wonder drug for PMR. I recently tapered off completely at the advice of my Mayo surgeon in preparation for an upcoming lumbar fusion surgery. I had my first surgery yesterday for nerve decompression.
Of course the PMR has flared again. I need strong bones for the second surgery and they don’t want me on prednisone as it weakens bones as a side effect. I am curious as to what side effects you have experienced in ten years from prednisone. My worst ones are weight gain, gastritis and severe sweating episodes. I have also been told it usually disappears in 1-4 years. I feel for you in suffering with it for 10. People just don’t understand how sick it makes one feel. Sadly, I believe the medical professionals really don’t understand the disease nor truly know how to help us.

I gained weight this first but then took it off when The dose has lowered. I have Osteopenia and this next test will probably show osteoporosis. I heal very slowly my skin is very thin. I bleed an awful lot when I just scratch myself but I am also On blood thinners. I am not strong and are very arthritic. But I am 80 (in 6 months) inherited some of the arthritis from my parents. I am also on shots of Actemra. Nothing here to complain about. I walk with a walker and my life is just fine. I am beginning to get a custom to old age. Excepting it a little better.

I had a friend who had a liver transplant and was on Prednisone for years.. he was having serious bone and tooth problems when they tapered him off the prednisone over several months.. Another good thing was that he also lost 50 pounds after the transition .. he lived 10 years after that transition and only Covid took him in Oct of 2020.. he was 83..

Hello @lmoross and welcome to Mayo Clinic Connect. Thank you for joining the discussion to share your recent tapering experience and to connect with @marilynredder2367 to learn from one another.

How long was your taper as suggested by your Mayo surgeon and how did that go for you prior to your first surgery yesterday?

Hello and welcome to Mayo Clinic Connect, @marilynredder2367. Thank you for sharing your prednisone history and experience with the group.

Can I ask if you were on a guided taper to the point where you are now, at 7mgs?