I was wondering if anyone has found that their current complications are due to the long term use of their SLE meds? I am not able to get off these meds because whenever I have tried, I get into a bad flair. I feel I am stuck between a rock and a hard place.
Unfortunately it is a choice we are forced to make- some of us cannot survive without our medications and we have to accept the lesser of 2 evils You can treat the long term effects of these medications albeit unhappily but you can't treat death as the worst case scenario or organ failure due to inadequate treatment. You just keep your head down and keep trudging on One thing we all seem to forget is that any long term illness has long term ill effects- diabetes has horrendous long term complications with or without medications as an example.
I have been on plaqeunil, prednisone and other drugs for 12 years. I had the brilliant idea of trying to get off of some and ended up in the hospital for almost a month. Sadly, your body WILL shut down without their help. It definitely was not worth it!
You have certainly helped me to put things into perspective, I am grateful and thank you. Your replies hit home, and I will take to heart
Blessings
I have always tried to take as less medication as possible for SLE, so therefore I took Prednisone and hardly anything else with it for 20 years or more. Some of that time early in my diagnosis, I would always do whatever I could to come off the Pred, and would be successful maybe 12 months on and 12 months off. A stress free lifestyle was my other alternative and that worked well for me also. As of three years ago I got really sick and found out that I had been on Pred. for so long that I had become immune to it. I still have to taper off the Pred. until Im off completely. Im taking Imuran along with the Pred. I have never experienced the kind of craziness with my body ever until a year ago. My body is addicted to the Pred although its not doing me any good. Maybe Im just at another phase of life with lupus. Gotta find the right combination. Im scared of a bunch of pills but I gotta get over that and do what I have do in order to find comfort. I always knew that there was a dangerous side to Pred. but Im thankful for all the years of a life without pain that it gave me. Good luck managing your meds and your SLE.