Does it depend on something? Age? Length of time on prednisone? There where a lot of people that were on prednisone for a long time and still got able to get off prednisone completely, so I was wondering is there any rule? And how often does it happen with wg patients?
I have been on and off prednisone for 30 years. But this time it is a little more tricky...my body is not liking the fact that my prednisone is being lowered. I am on 7 mg of prednisone and hoping to wean down to 5 mg of prednisone. I am already feeling a little more sinus stuff coming on......even thinking about increasing my prednisone to 8 mg. OH NO!
I really think weaning from prednisone has to do with how active your wegeners is and damage done to the lungs, sinuses...ect
The way I see pred is that when you start giving it to your body in pills, it decides that it doesn't need to make any of it's own anymore. Dropping pred slowly is a way of tricking your body into making its own again, I think normally your body makes about 5mg of pred. So when people try to drop lower than 5mg they often encouunter problems because their body refuses to start making its own cortisol again. I think a lot of it depends on how long the body has been allowed to skip this job and whether it can remember how to do it again.
I might be wrong but I also think your adrenal glands are with your kidneys, so if you have kidney damage you might have more trouble when trying to get off pred. Don't quote me on that though!
I know at least the first part of Luce's post is exactly how my doctor explained it to me. Even though I hadn't been on pred (and 4 mg a day for 15 days at that) for a year, they gave me a higher dose of pred than normal during my surgery simply because they couldn't be sure that my adrenals were up to the task.
There are no hard and fast rules, Katarzena. One thing is for certain: If you've been on at least 20mg pred for 3 weeks, your adrenals stop producing their own cortisol.
There's no way of knowing whose adrenals will become permanently dependent on pred. If someone has been on higher doses for longer time, then it's more likely that they'd need to stay on some dose below 10mg--even just 1mg. However, some people have never been on very high doses but their adrenals become permanently dependent regardless. It reflects our biochemical individuality.
After my difficulties with the tail end of my pred taper last month, Dr Seo told me the longer you've been on pred, the slower you have to lower it when you get below 10mg.
Even though I was off pred for 2.5 years, and then only on 4 mg for almost a year, he viewed that as "long-term." Our conversation was funny. I'd suggest an example of a slow taper and he'd say "No, much slower." Then I'd say a much slower one and he'd say "Much slower." It was hilarious, but showed me that most of the people on here are trying to go way too fast.
Elephant, maybe you can get enough relief if you bump it up by 1/2 mg (or something very small) and sit there for months. That's the kind of plan he suggested.
Thanks Sangye, I really needed that encouragement...I have been going back and forth in my head ..do I increase the prednisone or wait another week to see how I feel or start a different antibiotic ( which I have in hand)...so I decided to take the antibiotic today to see if that would work ...but I think I will up my prednisone too. My Rhuemy does not get hyper if I increase it a little.
The joys of WG