I saw Dr Seo today and got good news, bad news and answers to a lot of our questions. He's such a kind and compassionate doctor, so patient. I arrived in a pool of tears and spent the entire appointment crying, but he took time to answer my questions, explain everything and reassure me. I'm unbelievably lucky to have him. This week is my 4 year anniversary of being dx'ed, and I had hoped to be in good shape to celebrate it.
The good news: The rtx is working very well to contain the Wegs. His plan is to repeat it yearly, and he doesn't think I'll need to go on another immunosuppressant in the meantime. I thought he was going to put me back on Cellcept until the next round of rtx, so this was great news.
The bad news: When I dropped the pred below 1mg a few weeks ago, my adrenals couldn't kick in and I was in seriously bad shape. It took me several days to realize it (there were other things going on that confused the picture), and I've been bumping it back up ever since. I'm at 1.5mg but I still feel awful and have been pretty depressed the past several days. I couldn't figure out why I felt great at 1.5mg before but feel awful now. And I had no idea what to do about it.
Dr Seo explained that when you drop pred too low for your adrenals to kick in, you have to increase the dose all the way back up and leave it there for 6 months before trying to taper again. I was totally shocked to hear this.
Even though I started at 4mg, he wants me to go back on 3mg. I felt awful on 3mg, so he's willing to let me increase it slowly from 1.5mg to see if something below 3 works for me. He said that when I first noticed the 0.75mg was too low, if I had increased it to 1mg within 2 days I could have avoided this increase. Waiting 5 days was too long.
Fortunately, the pred drop did not wake up the Wegs. It just zapped my adrenals. The fact that I'm under constant high stress made it even worse, and may mean I can never get below 1mg. This didn't surprise me.
Now listen up, fellow taperers. The first sign I had that the pred dose was too low was a sudden feeling of extreme sleepiness in the afternoon the first day of the lower dose. It felt like someone gave me anaesthetic and wouldn't ease up. It happened the 2nd day, too. By the 3rd day it was constant. Dr Seo explained that when you get to these very low doses you might need to split the daily dose into morning and evening. The low doses of pred don't last long, so by the afternoon your adrenals are getting nothing.
As far as my future, Dr Seo said there are 2 areas to control: 1) Get Wegs under control and 2) Get adrenals functioning (off pred or on a dose that makes them happy). For 4 years we haven't had either area under control The Wegs is behaving and now we just need to get my adrenals happy. Then we'll be at "Ground Zero" and I can begin-- for the first time-- to get stronger. Through a lot of tears I asked if he thought I could ever work as a chiropractor again, and he said "Of course." That was so amazing to hear, because I really couldn't see how that could happen again.
I'll share the tons of info he gave me about Wegs and the drugs in the next post.
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