I have been in a nasty flare for 3 months now. I have had 3 EL visits tests after tests doc. Appointment after doc. Appointment. I have been unable to eat and have lost almost 25#. They are unsure why I can’t eat and even did an upper scope. The ER visits were from severe kidney pain and bloody urine. My labs showed high red blood cell levels. The one visit to the ER showed an inflamed kidney but no stones so they couldn’t figure out what the problem was. I was seen by a urologist and they did a cystocapy (sp) and found renal papillary necrosis. He connected it to the cell cept as well as possible interstial nephritis. I had only been on it for about 2 wks. Before this all happened. He looked it up and 1 out of 11,000 people had this side effect. I am now off the cell cept and waiting for the next step. Any one else heard of this?? Thankfully they put me in for observation and are giving me solu medrol 40 mg. Every 6 hrs. Hoping it will kick this flare.
I hope you are better soon. Hopefully this will help with the flare and can tell you the next steps in your treatment. Try and get a little rest. Keep us posted on how you are.
Sorry you're not doing well. Maybe this will help you.
Take care.
Well I was discharged this morning and now I’m being re-admitted. … I’m just thankful for one amazing primary doc.!
I am so sorry to hear you’ve been in this frightening flare! So now your life is on hold again. I hope and pray that the medrol does the trick. My new nephrologist told me the cellcept wouldn’t have hurt my
kidneys, but clearly it can. At least sometimes. I lost weight on it, not as much as you, because it changed the way food tasted and only fruit and ice cream were edible. And I got nauseous sometimes. Get better, we’re all rooting for you!!