Posted 5/9/2014 4:55 AM (GMT 0)
Hi all,
First, the good news. I have completely weaned off Lyrica and Topamax completely and I can think again! I can concentrate on work! It's pretty awesome. Now I'm trying to get off the Gabapentin without bringing back the chest pain too significantly.
My respiratory issues have also cleared up now that I'm 11 weeks out from my last Remicade infusion.
That said, as I've been removing meds, my GI symptoms have grown much worse. Daily abdominal pain, constant nausea, night sweats, severe fatigue, weight loss/lost appetite, constipation (unless I take stuff and then I swing the other way, which is pretty new--I only recently started having strong reactions to the laxatives).
I started Lialda last week--not sure if it's making things worse or not. I agreed to give Remicade one more shot because it's pretty clear at this point that it was helping, but if the respiratory issues come back I'm going to switch. I'm also having a gastric emptying study next week to determine if I have slow motility, which my GI thinks might be causing the nausea.
The mental clarity has made dealing with the GI pain much more tolerable, although I was really hoping that the fatigue would drop and it hasn't. I have three work trips (two domestic, one international) in the next five weeks, so I'm really hoping for something to start kicking in. I'm tempted to ask my GI doc for prednisone to try and get things under control, although she is very against it.
Anyway, I'm rambling at this point so I'll stop. :)
Thanks for this space for me to get everything off my chest!