Saw Dr. L yesterday. It was a good meeting, and interesting too.
He started by saying, "I'm not the same dr. I was 3 years ago, so my approach to your case will be a bit different from before." He noted that my primary concern is my eyes at this time. Most of my eye issues, except the scleritis and corneal melt have not been vision threatening. So, what he wants to do is treat my case like a new case. He wants to get very careful documentation of my eye flares and what controls them. He wants me to taper the prednisone slowly and if a flare occurs with a non-vision threatening event, then try topicals besides steroid (which is what my topicals have been primarily), before going with the "mac truck" systemic prednisone, as he calls it.
His concern about infusions is that we've tried almost every type of immune cell suppression out there, and none reset my immune system. He's worried that without "new approach" data, he'd just be winging it as opposed to being methodical (a part of his methodology changes. that was influenced by my prior physician). So, infusions may occur, but not for 6 months or so if the data supports it. His hope is that we'll strike upon something that will control the eye topically and remove the steroid that way.
My opinion: Not sure this is going to work long-term, but I'm happy to try.. I agree to help him get his data in order to give him everything I can so he can work my case with confidence. I need to do this with Dr. L because if infusion is the end result, he'll need to be my referring physician for insurance purposes and it must be done at JHMI. It would be easier if I was local, but he thinks with coordination with my Seattle Dr's and possibly a recommended Optha from JH's Wilmer Clinic, we'll be able to get the data he wants and needs. It may make things rough going for the fall, but I guess the most important part is that I can get the coverage I need based on what happens.
Next step is to get a baseline eye exam. Since all the Wilmer Eye Clinic JHMI folk were not available this week, I emailed my former Optha, Dr. T and asked if she wanted me to head back to Baltimore to see her. She emailed back saying if I could get into UW to see Sanjay, who I know from my time as her patient, she'd be more than fine with his info. That's a good thing! So, off I go to do that...need to get my baseline beore I can start my taper.
It will be interesting to see if my raw food also helps the situation. I know it won't be 100% clear because there are two changes occcuring at the same time, but if I can taper and keep flares under control, it would be an interesting combination.
On my raw quest today, I made a nice, spicy kale salad for my friends and they liked it. I also made the chocolate mousse and key lime mouse for them. That, too, was a hit. The nut dip, not a hit! haha. I didn't like it as much as the first time I made it, too. I think I used pine nuts before, where tonight, I used sunflower seeds. they were too strong a taste.
Onward and upward!
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