Reply To: Experiencing Low Protein Levels

Thank you GH and Lori for your responses.

My GP just ordered a 24 hr urine on me which I will do this weekend. His theory right now is that the Cellcept perhaps may have caused damage to my kidneys and could be the cause of my issue.

But I did some investigating of my own and gathered all of my labs from medical records when I was hospitalized in addition to the specific date and dosage I had started taking Cellcept.

My protein levels had already been on a downward trend and was only 6.4 (the lowest in the normal range) a week before I had even started taking Cellcept. That’s not to say I don’t have any kidney damage, but it’s not a result from Cellcept.

To answer your question, GH, I guess I don’t want my neuro to mess with my meds because I haven’t had any setbacks since my hospitalization 3 1/2 years ago and it is the only treatment I’m getting for CIDP.

My neurologist told me when I started on it that it would take 6 months to work and in the meantime I would need monthly plasmapheresis treatments. If I was taken off Cellcept completely tomorrow and suffered a regression a year from now, I would be forced to start that cycle all over again. He would put me back on Cellcept and go through another six plasmapheresis treatments until the Cellcept took effect.

That is why I don’t want my neuro effing with my meds. It was lowered from 1500 MG a day to 1000 MG a day about 9 months ago. I don’t want him to fix what isn’t broken and I’m not willing to take that gamble. I love my active life too much to put that in jeopardy.

That may sound like illogical reasoning, but that’s how I feel about it.