I got a call from my nephrologist's office this morning because my lab results came in from last week. I was SOOOO excited at my last rheumy appointment because for the first time EVER I didn't have any white blood cells in my urine, and we figured it was because we increased my Cellcept to 750mg twice a day. So she let me go down to 7.5mg on the prednisone. Well, that eff'ed it all up. She didn't get into specific numbers, but the assistant who called said that the WBC's were back and my kidney function had "slightly" declined. So now I'm back up to 20mg on the prednisone and 1000mg twice a day on the Cellcept. Seriously, can I catch a break? I am thisclose to faking sick so I can go home, cry, and watch Lifetime movies. I WANT A NEW IMMUNE SYSTEM!!!
Rant all you want! I have a strange question for you. Is there some way you can support your immune system? A place to start researching can be found in my list below.
Thanks Joe. It's not so much that my immune system is weakened that bothers me, it's that my immune system is attacking my kidneys and forcing me to keep taking more and more of these drugs.
Erin, I wonder if there is an auto immune disease that attacks the kidneys. Maybe some thing like "IgA nephropathy". Check it out on the web and see if it fits.
Joe,
All of my kidney problems are related to Sjogren's. My kidney stones are caused by distal RTA, which is common with Sjogren's. The inflammation in my kidneys is from the Sjogren's as well. CKD developed at some point due to a combination of these problems. I had a kidney biopsy last spring that ruled out lupus and other diseases, thankfully.
I think my biggest frustration is that I lost 5 months of tapering off the prednisone in 10 days. I would honestly rather be in pain than on this drug at this point, but unfortunately my pain levels have nothing to do with it. I guess at this point all I can do is hope the increased Cellcept does the trick and I can continue to taper off the pred in the coming weeks.
Erin,
I understand your frustrations. I've been on prednisone for 2 years now and finally am tapering it down myself because doctors r refusing to do so. I just can't take anymore of the side effects of this drug. Mostly the weight gain and round face, not to mention the diabetes it's given me which led to kidney problems as well. They first put me on it for my ra and once that subsided i had to stay on it cause I developed scleritis . Now my scleritis has subsided and it attacked my intestines and now my skin and lungs. but the prednisone was not helping anyway and my doctors r very slow in getting me to switch to another med. After switching ra doctors for the fourth time i finally have one that is going to put me on cellcept. Before going on it, they want to perform a endoscopy and colonoscopy . Any way , thank u for listening . this was me ranting ;D
I have been on pred or something similar since 1984.
Hello Erin;
How are you doing now? I know a couple months have passed but I thank you for posting your info. I have Sjs and I am having kidney pain which docs cannot figure out. Was the cellcept able to help with your kidney issues? Were you able to beat the inflammation down with the meds? I sure hope all is going well with you.
Red