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cellcept clinic clinic appointment dialysis hemoglobin kidney disease kidney transplant lupus flare MMF Mycophenolate Mofetil rheumatologist

I miss my old Rheumy

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The other day was my first rheumy appointment with the doctor taking over for my previous rheumatologist.  I almost always have mixed feelings when I have to see a new doctor. It worries me when someone that I am not familiar with wants to make changes to my “regular” routine.

Anyhow, I went to my clinic appointment today and say the fellow first.  We discussed everything that needed to be discussed, including my hip replacement, kidney transplant, etc.  After the fellow examined me, he left to go and get the doctor.

Much to my chagrin, my new doctor was doing a presentation or something elsewhere and was unable to come and meet me for the first time.  He did, however, tell the fellow that he felt that it was unnecessary for me to remain on the drug mycophenalte mofetil (cellcept).  The fellow explained that this medication is meant to help the kidneys, and since I am on dialysis, it is essentially redundant for me to take it.

Don’t get me wrong; whenever I can remove a medication from my repertoire, I’m all about it…ESPECIALLY cellcept.  It’s the most expensive drug I take and it gives me the most trouble to receive money back when it comes to receiving reimbursement for it.  But I guess what I find worrisome is the fact that a doctor wants to stop this medication so quickly and (in my opinion..I could be wrong) without a THOROUGH investigation/review of my chart.  My previous rheumy is a very smart and reasonable doctor who knows me very well.  I think that if it were in my best interest to stop this drug, he would have recommended it (or at least suggested it).

I’ve said it once and I’ll say it again.  The weeks just prior to me having to start dialysis all over again in 2004..I was being discharged from the hospital.  A doctor that I had never met before came in and told me to stop taking a bunch of medication that I was on.  At the time..I was thrilled!  Less medication must mean that I’m getting better!  He told me to stop taking furosemide, rampril…and a few others.  He said that they weren’t “good for my kidney”.  I found this odd, because I had been taking these medications for several years and I seemed to be fine for all of those years (more or less).  It also seemed…strange that doctors would have prescribed all of these different medications to me if they were supposed to be “bad for my kidneys”.  Long story short…I stopped taking those medications and was once again in complete renal failure about 2 weeks later.  So as you can imagine, I’m hesitant to just “stop” taking things, especially when someone I am not familiar with is the one who suggests it.

Anyhow, my answer to this was that I wasn’t going to stop taking this medication…at least not yet.  I emailed my old doctor to see what his opinion is.  I hope he responds.  I have my transplant coordinator Julie working hard to get me my transplant.  I don’t want to do anything that’ll make me sick and put my transplant on hold yet again…!

Other than that, at the moment, my hemoglobin is 105! (or 10.5).  Yay!!

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