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

It was 10 years up and down and so I decided to guide myself I needed a slower taper and I needed Actemra. I am still on Actemra every other week plus the 7 mg. The shots take care of inflammation and the prednisone takes care of the adrenals. I hope that makes sense

Hello looperdolly: First, I wish you all the best with your journey toward better health. Too, I encourage you to work closely with your doctors to make sure you are progressing safely as you and your doctors work to help you decrease and cease with your medication.

I was diagnosed with 4th stage sarcoidosis in 1977. My doctor had me take Prednisone for 9 years; during that period, he eventually lowered the dosage over time until he permitted me in 1986 to cease taking the Prednisone. I am now in remission and have been off Prednisone for the past 35 years; my doctor did not require any further testing, etc., and I have not been diagnosed with any complications related to Sarcoidosis.

Hello! I too was put on prednisone for an acute episode of sarcoidosis in my eye and lung. I was weaned off after 5 years - and then took methotrexate and/or Imuran for the next 6 years. The sarcoid reached my heart and I needed a heart TX. My docs are concerned that the sarcoid could return - 50% chance- so they prescribe prednisone for the rest of my life.

@guidant07 thank you for your reply. It certainly is a tough risk/reward analysis to make. I've not yet ldata on this either. Before endeavoring down the taper path, it would be good to know whether the adrenal glands (which reside on top of the kidneys) are likely to be intact or whether they are likely to have atrophied to the point of no return. No point in doing a prednisone taper if the adrenal glands are so far gone they will not be able to fill in the gap.

Wow, so many responses to my original post. Thank you, each of you! The types of side effects that I'm trying to manage (with the assistance of my medical team, of course): Cataracts and lens replacement surgery in both eyes at the age of 45 (Posterior subcapsular, I think), osteoporosis, multiple bone breaks, arthritis in shoulders and knees (at a young age), shoulder replacement attributed due to long term prednisone use..., multiple skin cancers (a gazillion...), moon face, extra tummy weight, etc. I'm 55 presently, and we are working on a plan to protect my kidney (of course) and the rest of my body for the next 30 years. I am physically active, and of course I count my blessings every day of my life for this amazing gift.

Hi estrada53: I am wishing you all the very best.

Stay strong, looperdolly! We are pulling for you to get better and better!

Thank you! You are kind! I am doing quite well!

I was on Prednisone for a good portion of my life for Crohns Disease. I then developed a bad case of osteoporosis and my bones became quite bad even though I was a runner and fitness leader and exercised so much so they put me on Prolia injections twice a year when it first came out and that shockingly not only helped stop the osteoporosis it actually laid down some new bone .Imagine that! They ever so slowly tapered me off Prednisone once they knew the Prolia was a success for my bones and I went into remission for Crohns as well around that time. I have to be on Prolia and Imuran the rest of my life. I was so thrilled to get off Prednisone in as much as it is a wonderful wonder drug it is bad for so many other things in your body if you spend years and years on it as I did..