I'm wondering, how many of you have been on prednisone continuously since getting diagnosed? I've been on prednisone since around 1997 or so. Varying doses, for a few years i was off oral prednisone and went to the hospital to get methoprednisone, can't remember how often, a few times a week i think from breakfast to dinner. I remember that because they fed me breakfast lunch and dinner and as a poor university student that worked out well, especially considering how much i ate during that… read more
Hi. Yep I’ve been on them nonstop for 30 yrs. I’m now 67. I started first at 50mg and than also did the pulse therapy at the same time. I can’t go off now because something with my adrenal glans are produced anymore. So the lowest I could go to is 7.5mg. I’ve really not had any problems. When I had a torn rotator cuff the stitches didn’t hold. And just this yr my bone density went up a bit. I’ve also been on 400mg of plaquenil for the same length of time. Back in the old days, prednisone was your life saver. I can do anything and everything in life as before. I still drink alcohol, go anywhere I want. I’m having more problems with my back that was fused. My dr once told me that I can be here on earth for a good time, or a hard time of pain. I chose living. It’s not for everyone but this was my choice. So you must make the decisions with your dr what how you want to be treated. I never had any choice, but no regrets. Good luck with the choice you make. ❤️🙏🥰
Prednisone can do damage to organs but the alternative sometimes is more damaging. It's a matter of the lessor evil. talk to dr about it.
And your adrenal glands! I’vebeen On preds forever and recently had an Addisonian crisis with adrenal problems.
I been up and down on prednisone since 2005 when I was diagnosed with lupus, my high dose was just last November through February of 60 mlg. They weaned me off slowly and now I am at 2 mlg. Back down to where they had me.
There seems to be a fine line between help we need and what is offered by our caregivers. I’m blessed that finally my husband has stopped being judgmental and accepts whatever my day brings. Adjusting to the wheelchair has been difficult for both of us when traveling to anywhere. We have a lift in our car but is a lot of trouble. I couldn’t do it alone.
Finally I have dropped feeling guilty for everything. It’s been a very long process.
Thanks for writing. Jo