I was diagnosed with SLE and Discoid Lupus about 8 years ago. The first four years were eventful but in the fall of 2001 everything changed. In October 2001, I was hospitalized because of an infection. Since then, I've just been getting worse. Two years ago, I had to stop working and go on disability. I've tried a lot of different medications (imuran, dapsone, cellcept, methotrexate, enbrel, thalomid, plaquenil, and now cyclosporine) So far, predinose is the only medication that helps with my symptoms.
I've been fortunate to find really caring doctors, but lately, I've been having a hard time coping with it all. I know that things could be worst, but I don't find any comfort in knowing that. I'm trying to hold on, but I feel so tired of all of it.
I'm thankful for this site and the opportunity to reach out.
Hi, I feel like I just wrote that. Stay Strong. We have good days sometimes!!
My symptoms seemed to get worse after a bad infection, too. I was having a procedure done for my gallbladder which involved an endoscope. To make a long story short, I developed pancreatitis. They said my infection required the strongest antibiotics they make. Then they pulled out two different antibiotics, when the first two didn't work. I was in the hospital for 27 days. I've had this tongue/mouth rash issue ever since. It used to be off and on, but now it's on more than off. I wonder since we already have messed up immune systems if some how an overload like this really messes it up. Another weird thing is I used to get fevers all the time. I haven't had one (even when I've been sick) since the hospital stay. Lots of things to ponder...
God bless you (I know we all need it )
I know what you mean about being frustrated with having had a bad infection. I had hip surgery in Jan and then 3 wks later came down with a staph infection. I spent 2 weeks in the hospital and have been going to wound care for over 2 mos. My surgeon thought I possibly got the staph because my immune system was supressed due to Cellcept (I had also just finished 6 mos of Cytoxan therapy). I had a bad flare in the hospital and broke out in a terrible rash on my face. Since then I've had major problems with joint/skin/mouth sores. My rheumatologist put me on Plaquenil in addition to putting me back on Cellcept.
I'm also having problems with arthritis in my hands and a cyst that needs to be removed in my right foot. It's terribly frustrating and not a day goes by that I'm not in pain. My wound care nurse and my doctor try to get me to slow down to heal properly from the hip wound but who's going to pay the bills? My husband can't do this alone.
What puts this in perspective for me is I have a friend who has terminal breast/brain cancer. She's gone through pure hell. So I know it could be so much worse!
I definitely can relate. I don't have any known organ involvement yet and when I read what some of you guys are going through, I stop feeling sorry for myself (for a little bit anyway). I hope your wound heals soon and they find a cure for all of us. I'm seriously considering trying acupuncture. My understanding is that it works through your nerves to send your body messages. I want to give my body the message to work right!