I hope you are feeling well today! I should have done this sooner but I just haven't had the brain power.
I see the rheumy tomorrow and I need to discuss a number of things. I have primary SS and it seems to be out of control. Since Janurary I have been in an almost continuous flare. The latest has been mainly my ATN. I have never had it this bad! For days I had screaming,crying pain that caused me to collaspe. I have spent most days in bed. Since Friday I've been on 50mg of Prednisone (up form 5mg), 1200mg of Oxcarbazepine (up from 600mg) and Gabapentin 2400mg (up form 1800mg) and Dilaudid for pain. This has helped but I still am debilitated from the pain and effects of the meds. My neurologist said there is nothing else she can do, it is from the SS. I cannot put into words how awful those words made me feel.
This has to stop. I now believe I have no choice but to try biologics. I am also on the usual cocktail of SS meds (Plaquenil, Lefludimide, Restasis) but they are no longer controlling the disease.
My question to all of you is: What do I ask and discuss with him? I am quite out of it so I'm afraid I won't think of everything. I usually make a list but even that is hard right now. Can you help me organize my thoughts so I ask the right questions? My husband will be with me but this has to come from me.
Thanks so much!