I need a bit of help. I recently switch Dr. after being unhappy with my other Dr. After being on prednisone for the past 20 years and 10 joint replacement operations my new Dr. wants to try to take me off of prednisone. My new Dr. is not sure if I am getting any benifit from the prednisone anymore. I am currently on 10mg a day (5mg 2x day) My Dr. wants me to go down 1mg at a time every 6 weeks. My question is, has anyone here been on prednisone for years (5+) and came off of it?? What was it like?? Did you hurt more?? Thanks for anyones help.
Scott
No real experience to share Scott; but wanted to wish you good luck. I know of many here that struggle to just lower their predisone use and I know how hard they say it is.
I hope it will be an easy process for you.
I have been on pred for five years. I wean off it but then flare. I also develop scleritis in my eyes. So...put back on. I am currently up to 10mg. and will try to wean again. Dr. wants to get me down to 5mg but even he is not sure.
I know how hard this is. Please let me know if you can do it. i have pretty much given up hope.
Becky
good luck...hopefully it will work. Don't be surprised though if the taper ends up slower than planned. You may need to go down by .5mgs just to let your adrenals recover
Hi Bubba, I have been on Pred for 7 years and can't get below 10mg a day without big flares, good luck???? Janie. OOOPs! See other post.
I was on pred for over a year and when i came down it hit with a thud.
I had to go down the smallest bit instead of what they said. I took the 5mg pill, cut it in 4ths and then cut those pieces in half. It's the only way i didn't go into an entire flair.
Part of it will be that your body needs it (or thinks it does) so you flair up, kind of like an addiction. It took almost 2 weeks to get swelling down to normal.
I don't think you can get off pred totally.Surely after 20 years your body is is depending on the stuff. After such a long layoff can the body learn to make it own again?
Read up on alternate day therapy with predisone - it is supposed really help reduce the negative side effects.I'm really curious as to why the new doc wants you off the pred - are you having a major problems with diabetis or osteoporosis?
The longest I have been off it is a month. What bliss. Then the big flare hit. I hate the stuff. I am trying to wean down also. Currently at 7.5. I have had such bad luck getting off the stuff it is depressing. Then I saw my pred face on my new driver's license and decided I wanted to try again Roxy,I have been stuck at 3.5 for 1 year and I agree I absoloutely hate the stuff. No matter how little I eat I get fat, especially in the tummy area. Can not lose weight no matter what.
[QUOTE=LinB]Hi Scott, have been on Pred. for 4 years. Started at 40 mg. and was down to 5 mg. but I developed adrenal insuffience and had to up Pred. to 10mg. for a month. In a month I'll start tapering 1mg. at a time over a 3 month period. I may not ever get lower than 7.5 because of my adrenal problem. Sure hope you're successful. Keep us posted and if you need any support don't hesitate to post. [/QUOTE]
Can I ask how you knew you were in adrenal insuffience? I felt so awful going down to 1 mg. (my RD said my RA was out of control) that I am not sure if I would know.
Poof, I developed incredible muscle pain in all of my muscle groups. I had dark brown urine, fatigue - much worse than RA fatigue. I slept 14-16 hours a day for a couple of weeks. I was confused and had brain fog. Adrenal insuffiency can kill you if you're not diagnosed and treated. The adrenals put out about 7.5 cc of Cortisone/Cortisol into your system on a daily basis. You need this much to survive. It's a natual occuring process. When you're on steroids for a long period your adrenals don't have to work so they get lazy or stop working completely. I hope that I"ve explained this correctly. Believe me you'll know.
I talked with my internist today and he wants me to taper only .5mg per day for 2 weeks. It's going to take me longer but that's ok. I was so ill for 2 weeks that I'll do whatever I need to do so I don't feel that bad again. I may have to stay on 7.5 mg. for quite awhile.
I've been on a relatively low dose of pred for 10-years. I have tried to wean and got down to 5 mg. and "hit the wall." I may have been trying to get down too fast, not sure, but I had to go back up past my normal 10 and then back to the 10 mg.
I will be trying again very soon. Good luck.
Janis
Good Luck! After being on prednisone for 15+ yrs., my adrenals have stopped working and I was told by my RD that I'd never be off prednisone. I tried to get completely off of it about 4 yrs. ago because the remicade was working so well. I wasn't flaring from lack of the prednisone but I was sick as a dog because of it. That's when I found out that this was a lifelong sentence from my doc. I'm down to 5 mgs. a day now and I don't have the usual "prednisone face" or the food cravings. Just kind of maintaining.