We've been posting about my recent problems with tapering while also, starting to change dosage to twice a day. Two serious Flares within ten days. While dropping from 18 to 17, made the mistake of adding another variable...using an enteric capsule. To keep this relatively short...believe a total of 10mg flushed through my system over a period of less than two days. Made two trips to the hospital, eight days apart. The first time, extreme head pain, nausea, body pain, etc., etc. Received 125mg Medrol, Dilaudid for pain and Zofran for nausea. Next day via phone South Carolina Rheumy ordered 60 mg for one week, 40 next, 30 next then 20 until we see him when we get back home...June. Did as was told, was only feeling somewhat better but dropped to 40mg....woke up in the middle of the night....same type Flare with constant vomiting added instead of usual nausea.
Today, saw a Rheumy we've seen a few times while in Florida for after hospital care. Try not to see him....are not sure of his judgement or knowledge. He's the only Rheumy in the area. I had already gone back to 60mg for the three mornings since hospital visit. Asked for his advice at this point. immediately said to get off 60...drop down to 20.( ?????) If it didn't work when I dropped to 40, I'm afraid to try it again. Certainly afraid to drop to 20. Just afraid to drop while still having such severe symptoms. At this point, will add...I have Fibro ( diagnosed 15 years ago). I would not describe it as a terrible case. Have NEVER had headaches with it. In fact, until the last fifteen months....rarely had a headache. He acts like I'm enjoying this very tough life of GCA/PMR....perhaps wanting me to believe it's Fibro. Suggesting another drug, perhaps Lyrica. Even seemed reluctant to refill 20mg Prednisone tablets. Does anyone choose to be on Devil's Drug ????. Other quick facts... #1-.my lab markers are always fine.#2- Lost some vision and some hearing on left side originally after going without Pred for 54 hours....a mix up last year during the Holidays.#3 Next visit is to be in one week, supposedly agreeing on 40mg at this time.
I'm feeling desperate and confused. Don't believe this would be the advice of original Rheumy. However, at the moment....he is on Spring break. Would appreciate any ideas or suggestions.