I was just diagnosed with lupus about two months ago. They have started me on plaquniell and steroids (mainly for my kidneys) my kidneys are finally down to high normal but everything else has seemed to have stayed the same and we havent seen any progress. There are now talking about upping the steroids and adding CellCept, I am wondering who out there is on it and what there experiences are with it. My doc mentioned something about it and being pregnant?? I am only 20 there is no way I will be having kids in the near future but will it later affect my chance of having kids etc.... I do want to have a family one day,,,,,
You need to ask your doc about the future and pregnancy, but other than that we could be having identical treatments.
My kidneys were bad enough that I was nearly in kidney failure within weeks.
My Rheumy started me on a low dose of prednisone, Plaquenil, and CellCept. The side effects of the CellCept are normally stomach upset or diarrhea. This didn't work initially so we have lowered the CellCept and I am on a higher dose of the prednisone to as she put it "put the smack down" on my flare. CellCept can take months for patients to see improvement, but after 7 months I am seeing some, especially in cognition but the Prednisone is finally starting to be weaned.
Take good care of your health.
Thanks! I have been on prednisone now for 2 months...they started me at 60 for a wk then 40. 20 then 10 they then were going to take me off of it but my kidneys actually worsened so they put me on 2 days high dose IV steroids, i am now down to 20 mg a day. I am better than when I was first dx, but not what I was before. I am still trying to adjust to this and accept this is how my life will be.My mom is the best support system she is the only one that truly understands what I am going through. as to everyone else around I look just fine. It has affected my right side (giving me stroke like symptoms), and lungs so I cant go shopping or long distances without a wheelchair or scooter. and as my sophomore year of college is approaching I am struggling with what I should do..... my inflammatory markers are way down but i am still feeling everything it finally inst constant pain but it comes and goes through out the day. some days are easier than others but i am slowly adjusting and accepting what is going on.
I have had many of the same issues.
Brain fog, miscarriage, stroke, TIA's, pneumonia, seizures and of course the kidneys. I was only diagnosed last November so I think it is very good that you have your diagnosis so that you can concentrate on keeping your health. As to the rest of your family, give them some time. As hard as this is for you it is also hard for them. You are grieving the loss of your "old" self and in their way they will have to also.
As to continuing college, I really believe that your "brain fog" will start to get better, much as mine did although it will still be around the corner just when you least expect it. The CellCept will start helping, but can take 8-12 months to be truly effective. In the meantime you should talk to the Disability Administrator at your college to see what accommodations can be made for you.
You are strong and courageous and already from reading your posts I can tell that you are willing to do what is necessary to be the best version of your self.
I am so anxious to see what you conquer next.
Thanks for the encouraging words!!! :)