Hi Marge2.0. I don't know if anyone has welcomed you to our forum, so I'll just say Welcome! Last year during March I was in hospital twice (pneumonia then sepsis or
lupus pneumonitis) so they were giving me 300 mg pred daily. I feel your pain Sister
Anyway, I did the 40, 30, 20, 10 thing and rheumy said to decrease 1 mg per month and maintain at 5 mg. So, 9 mg, 8 mg, and 7 mg were okay. The adrenals are supposed to kick in below 7 mg of prednisone. Well, I've had lupus almost 10 years and I've been on pred many times for months or years at a time. When I tapered from 8 mg to 7, it was tough with lots of pain and fatigue, but the drop from 7 to 6 and then 6 to 5mg it was brutal.
I've been on 5 mg for almost 1 year, and I have pain almost every day (various joints) and terrible fatigue Recently I developed shortness of breath. Benlysta made me even more fatigued, so that was a wash. Last week my rheumy told me to increased my Cellcept and he put me back on Celebrex for the pain.
I have an appointment with an endocrinologist in July to see if my adrenals are still working. Rheumy asked me to see a cardiologist so I can get a full cardiac work-up to address my shortness of breath. And so it goes. I truly hope that since you're relatively new to lupus, you are able to stabilize at 5 mg. In previous years I was on a 5 mg maintenance.
Oh, for the dry mouth you can suck on sour candy or candy sweetened with xylitol. Brush your teeth with Biotene toothpaste, use only non-alcohol mouthwash, and you can try Biotene Oral Balance before bedtime. Dry eyes, if not supplemented with eye drops can cause permanent damage. Well, I hope you were able to read all this- I can get long winded which is really funny since I'm short of breath. Let us know how the taper goes, okay? Love, Butterflake