Well I’m back to trying to get off the prednisone. I got down to 3mg before being put back on 10mg for a flare. I will go down 1mg every 4 wks. I’m nervous I’m going to flare again. I see my docs. Again next week and I’m hoping for some more answers. Every time I go down I feel sick, by the time my body is adjusting it’s time to go back down. Ugh!! Worse thing is ill be going through this while trying to go to school. I went down Sunday and I could already feel my body not liking it. It doesn’t help I’m also trying to recover from over doing at my brothers wedding. I just really hope my kidney doctor will finally see that I do have lupus and what I’m feeling isn’t just from the prednisone and once off of it I’d be magically better. I know he’s not going to be to happy with everything I’ve had to do but there’s nothing I can do. I told my doc. I have to do something so I can actually somewhat live a normal life besides being in bed 24/7. I’m tired of saying no to my friends cause I’m sick not being able to simply run to the grocery store or go to church. I am trying to find a great rheumy. But it’s very hard to find one where we live, without going all the way to mayo which is a 7 hr. Drive and lots of $$$…
I use prednisone as a rescue drug, if I am having difficulty breathing only. There Are negative Long Term Side Effects To Prednisone use. Discuss the rescue option with your doctor see if it is best for you.
Sorry to hear the struggle of finding a good Dr, it took me a while to find a good one. I am having the same old prednisone problem also. I went on benlysta thinking I could get off from it, but not so far. And now I am back up again in a flare. I have my daughters wedding and moving this month, and would like not to be all bloated, irritable, and or in a flare. I am so grateful for this site, I feel rather alone in all this.
The prednisone does have some long term side effects, I went back on it short term, I felt worse than what I did without it, was glad to be off of it, doctors think I should be on a 2mg per day maintenance dose, I declined explaining that I feel better without it, but if I get into trouble again I would consider it short term only, I have significant lung disease from lupus, along with kidney, liver and heart, so I'm with unshoreandscared, use it only if I absolutely have to, and for the shortest time possible. As for the rheumy's good luck, I've been to mayo clinic and while they are very good, I didn't learn anything I didn't already know and yes it is very expensive, my insurance only covered 80% and they wanted the other 20% upfront, I paid it, but came away with nothing different than what the local doctors had already told me. To my way of thinking it was a huge waste of money and time.
Yeah! I have been diagnosed with the Cushing syndrome from the pred. So that’s why they want me off. It’s currently the only thing I’m taking for the lupus besides my seizure and blood pressure pills and a few pain meds. I wish I could feel better off of it but I don’t. I’m not sure if it’s just cause my body is so used to it or what. But as I got closer to 5mg. The worse I got and by 3mg. I was in a full flare. I started to feel like I did when I was first diagnosed and spent 3 wks in the hospital. So I just don’t know if I’ll ever get off of it. My doctor did hint I may never get off of it. They almost put me on methotrexate but the rheumy I saw said I didn’t have lupus cause my labs didn’t match hers so she didn’t want to put me on it. Needless to say I have not been back to her and looking for a good one now.
Ever hope I know the feeling! I had just started to get my face back and lost the full belly look and bam. Right before my brothers wedding I started to look like a chipmunk! I hope you can rest well and avoid a flare! Although Im paying or doing so much at my brothers wedding I’d do it again! Some things are worth the price!
Hopeful I’m sorry you didn’t have good experiences with mayo. We have a very small town clinic and hospital so after I got so sick and they didn’t have enough of the technology and stuff to find out what was going on I was sent to mayo. We spent 3 wks out patient there before being diagnosed. I had great experiences with all the docs. Except the neurologist. They didn’t make us pay upfront and once we met the deductible everything was paid for. Although my doc. Couldn’t diagnose me as he didn’t have all the confirmed labs and testing. He knew from the beginning I had some auto immune disease and wasn’t one bit surprised I was diagnosed with lupus. If I could I’d do all my doctoring with him!
Louters- my rheumatologist is Dr Esperanza Cleland at Valley Bone & Joint in Grand Forks, she is amazing!
Mari, I’m glad you have had a good experience with her. I haven’t and have chosen not to go back.