Posted 1/16/2008 8:22 PM (GMT -7)
Hey everyone... been reading quite often - but not posting...guess I feel like my situation isn't nearly as bad as others - so I shouldn't complain. I live in Northeast Ohio and I am six months into the lupus ride. Trying to keep educated about symptoms, treatments, etc., as well as keeping tabs on my labs and drugs.
The November MRI turned out fine. And, the neuro hit it right on the head (no pun intended...lol), I was having rebound headaches caused by the Darvocet I was taking for joint pain. No more narcotics for me! The bummer part is that because I'm allergic to sulpha, can't take any of the "migraine" meds. He gave me Keppra to help with them. And, in the worst case scenario - if they last too long, I just go to his office for a little "IV cocktail". Was on topamax to help keep the migraines away - but I've decided THAT drug is from the devil himself! I had SO many of the nasty side effects...I couldn't take it, so weaned off of the topamax. Ended up with a kidney stone (probably from the topamax). Had an ultrasound of my kidneys. No stone was visible - but they said I had "mild hydro-nephrosis". Have an appointment with the urologist next week to see what that is about. Checked what my latest blood creatinine level is - but it is within normal range.
Currently, trying to wean off of prednisone. Was at a high of 30 mg/day...now down to 12 mg/day and dropping one mg per week. Funny thing is...I was hoping as I dropped the dosage of prednisone that I would start seeing some of the face bloating subside...but it seems like it is getting worse, if anything. I "lovingly" refer to my face as being the size of a satellite dish...trying to keep a sense of humor. Yesterday it was like I could feel puffiness around my eyes just sitting there. Having tolerable joint pain... think it is just going to be a part of life.
Went for my three month visit to the rheumy. My labs are improving slightly. My anti-dsDNA finally dropped some...down to 193 from >300. Still showing significant lupus activity and inflammation, tho. The one thing I talked to the rheumy about was this itching that I get sometimes. Like...it drives me CRAZY! To the point I scratch until I bruise myself. Doesn't happen all the time, or in the same place. He doesn't seem to think it is lupus related, but, I think it is.
I also think I have a bit of the malar (sp?) rash. However, it is not raised & bumpy or bright red. It is more of a pink color. Seems like it gets worse in light. But - he doesn't think that it is a malar rash. Whatever... he frustrates me sometimes.
Probably the thing that is the worst is the fatigue. Can't seem to get a grip on that. Haven't quite got the "pacing" thing down yet. Had a couple good weeks around Christmas...didn't need to nap on Sunday afternoons for two weeks in a row! LOL...that was a BIG DEAL! But, seems like the fatigue is back in all its glory. After working eight hours a day, don't feel like doing anything when I get home...so end up eating dinner, cleaning up and sitting in my recliner doing sudoku. I really need to start doing some walking...just can't seem to work up the energy for it.
Have my six month check-up at the opthalmologist tomorrow to make sure the plaquenil isn't screwing up my eyes. Need to breakdown and fill my prescription for glasses tho.
Well, that's about it...
Take care everyone and hope you have a pain free day.
SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil