Well, I went to see my rheumy today, as I expected the news wasn't too good ! I had done my lab work last week and had it faxed to my doc, the day I went to have it drawn I felt absolutely horrible, I got to the lab and thought I was going to pass out. I started sweating profusely, shaking and had a horrible pain in my upper abdomen just as I went to check in. Of course the receptionist wanted to verify all my information and what not, I just looked at her like “lady, this is not the time.” I guess she noticed something was wrong and just told me never mind and to have a seat. It took a good 10 to 15 minutes for this to pass. about that time they called me back to have my blood drawn, I still didn’t feel too great, but at least I wasn’t shaking and sweating and what not. So, my doctor walks in, looks at me and says "I'm worried about you, your labs are not good at all!" Really, I wanted to say, "that's probably way I feel like CRAP!"
Anyway, I really like my doctor, he really is very caring and I know right off the bat how our visit is headed because he usually says something like that or "your looking great." So, needless to say, my counts are all over the place, my liver counts are off the chart, my platelets are off the chart, my WBC and RBC are low. So, at this point we re-did the liver profile in hopes that it comes back down, if it does we'll up the Imuran, if it doesn't he's referring me to a liver specialist, last thing I need! And he wants to switch me to Cellcept. I am to the point were I just don't know anymore, this is the 3rd immunospressant in less than a year. Is it worth it anymore? I really thought I was seeing improvements with the Imuran, but now it seems to be affecting the liver, so much for that.
Have any of you heard of or tried antibotic treatment for lupus? A friend of mine is about to try this, I just now learned about it and have no input what so ever about it, she just shared this with me today. I am going to start researching it and see what it is all about then depending on what I think talk to my rheumy about it. At this point I figure if it sounds half way decent I might give it a try if my rheumy is willing, I am so feed up with the normal medicines. The website she sent me is http://www.roadback.org/index.cfm/fuseaction/home.main.html
If any of you are interested.
He said there is no way I am ready to return to work, which is what I have been thinking, there is no way I can work 8 hrs a day at this point. My doc keeps telling me things will get better. He tries really hard to keep things positive for me, but I just don't know, it's been over a year now of this flare and I just don't see it getting any better. Is it just the nature of the beast? Or is it the medicines? I really do try to maintain a positive attitude because I know that helps quite a bit, but I am really bumbed about my appointment.
Lupus - 1997 Fibro - 2001 Sjorens - 2007 Raynauds - 2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis