So I was super prepared for this and left my notes in the Dr's. office.......DOH!
It went really well, spent about an hour or so. Went to the Chron's and Colitis Center in Boston at MGH. The Dr. I saw also has knowledge of the Kidney's and will be speaking to some kidney Dr.'s.
For my UC, at this time he feels that I am doing well and is more concerned about my Kidneys. I am at 10mg of pred and not flaring, he says that I can get on Remicade, Humira or Cymzex (I forget the spelling) there if needed. He agree's w/my other Doc's that it would not be good for me to try 5ASA's again (b/c that may have caused my MCD) and not sure what would happen to my Kidneys if I did.
He did say that he has not had someone like me before with UC and MCD and would be interested in doing a case study on me w/my Nephrologist to see if Remicade would put my MCD into remission.
This all hinges on what my next lab's say on 9/8, if I am in remission or headed that way, then I will stay on the same course I am now.....the azathioprine. I am not completely confident that aza is working for me (I am doing well now on 10mg of pred.).
There are 3 options:
1. If my MCD is in remission - stay on aza and see how it goes.
if MCD not in remission
2. Go on Cellcept and off aza - possible flare up
3. Go on Remicade and off aza - possible flare up and do I really want to be on this, instead of aza (which I don't even know if it's working or not). I'd prefer to take pills than get infusions every 8 weeks, I think??? Also insurance wise, if I ever lost ins. for whatever reason it would be easier and cheaper for me to be on aza.
Also, I emailed him to get clarification on a couple of questions I had but forgot what he said. If I go on Remicade and then I stop the Remicade, can I go back on it?
He was very good, did not rush me, really listened, confirmed a lot of things I already knew and is my key to Humira and Cymzex if I need it. I feel good to have that connection established.
We talked about pregnancy and surgery, pretty much stuff I knew already and what others here post. Pregnacy, could be good, bad or in the middle. Surgery, could be a possibility but there are other meds I can try. I brought the pic's from my last colonoscopy on 4/08 and he was very pleased with those and thought my colon looked really good.
I am still trying to remember it all. Thanks again everyone for all your help!
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 10mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs. Do you have edema? If so, check your blood protien level!