Monday, February 25, 2008

Diagnosis Day

Well today was the day that I've been waiting for - Diagnosis Day. It's kind of anticlimactic to be honest.

I have Lupus Nephritis mixed class III/V. I'm still not exactly clear on what that means, especially with this mixed class thing - if anyone out there understands this more than me please share. To start with, I'll be on an increased prednisone dose of 40 mg per day for about a month. In addition, I'm continuing to take high blood pressure medication and a diuretic. My doctor is also starting me on Cellcept therapy to see if it works. If not, then I guess he'll try Cytotoxin (or Cytoxin).

I'm not exactly sure how to feel about all this. I guess this diagnosis is not a surprise and certainly not the worst case scenario, but it still feels kind of scary. I know what to expect from higher doses of steriods - nothing good definitely but at least it's somewhat familiar and I can kind of plan for the side effects. I am NOT sure what to expect from the Cellcept therapy. Again, if anyone has any experience with Cellcept please share it with me.

Mostly, I'm trying to plan for the next few months and to try to figure out how this will all work with a job, doctor's appts., medication adjustments, etc. How do people do this? Maybe it won't be as severe a change as I'm fearing. The thing is, I really would like to change my job (desperately in fact) but right now seems like a bad time to do it. Of course, I also have a job interview scheduled for this afternoon, maybe not the best planning strategy.

I just feel a little stuck in situations that are not ideal mainly because of this new diagnosis and it's soooo frustrating. Also, it seems although I've received a diagnosis and initial treatment plan, this is still a wait and see game - not something I do particularly well. I want someone to say "You have X and if you do treatment Y you should expect a Z outcome." Unfortunately, that's not the case here - I have to see if Cellcept works and if I tolerate it, possibly test other medications, and still there is now guarantee that the nephritis will go into remission.

I think my new strategy is to trust in my doctors and just do everything that I can to take care of myself. That's it for now.


Julie said...

I don't have any knowledge or advice about your treatments. Sorry. I AM thinking of you. And I think it is good to trust the doctors and Move forward with your life. I guess its the balance. I think its great you applied for a new job! I HAVE learned you cannot predict life and NOT to try.

freegirl said...

Butterfly Girl-
I hope very much that your upcoming treatment with Cellcept is sucessful. I have been on the max dosage of this med for about a year and a half. My lupus has improved greatly during this time period; mostly, i believe, due to the addition of this drug to my daily pill regimen. Be hopeful about this medication, i've heard that it has shown much success in the treatment of nephritis. I personally have not had kidney involvement, but by what my labs indicate, could definetly face problems in the future. I send the best of luck your way, and dont have to much fun with your prednisone increase! (At least your hair will get thicker!) Mine is looking like crap right now. Try to keep things in perspective.

Fadia said...

Hi Butterfly Girl,

I have had Lupus Nephritis twice. Once when i was 14 and once right after i gave birth to my daughter. The first time i was put on cytoxin and the second time we tried cellcept and it was wonderful for me. Cellcept has MUCH fewer side effects than cytoxin. If your doctor suggests trying cellcept before cytoxin, i really recommend it. Cellcept is a sort of chemo but compared to cytoxin it was a breeze. I didn't lose hair and I was able to quickly taper off the prednisone.

Give it a shot and more importantly, remain positive and happy. Being depressed and stressed makes things worse. Get lots of rest and keep your spirits up and God willing you will get better.

Annie said...

Hi there!

Just stopped by and wanted to say your site looks great so far. I have class IV lupus nephritis and I went through the whole Cytoxan treatment and am now on Cellcept and it's been a lifesaver for me. I've also been on about 20 other meds over the past few years and dealt with a bunch of kidney related stuff. If you ever have any questions don't hesitate to email me at I know all the kidney stuff can seem overwhelming but it can get better. I promise :) Hope you're doing well and good luck!