Question for Cell-Cept Users

Hi Amy,

Cytoxan is a chemotherapy (immunosuppressive) drug.  It is usually give intravenously, 1500mg is a standard dosage.  If the U.S. is still doing the NIH protocol you do 6 monthly treatments which require a short stay at the hospital or at home with visiting nurse if your insurance permits that.  After 6 months you have a treatment every 3 months for 2 years.  The doctor will be sure that you have medication to lessen the nausea as well as provide you with Mesna at the time of the infusion which protects the bladder.  A long term side effect can be cystitis or bladder cancer so the Mesna helps prevent that.

There is oral cytoxan but the gold standard treatment is IV infusion.

10 years ago Dr. Burt and Traynor where doing stem cell treatments when more conservative treatments failed.  Don't know the status of that now.

John Hopkins was doing intensive cytoxan without the stem cell allowing the immune system to reboot itself, but I also don't know what the status of that is either.

I went to Germany 10 years ago for an intensive treatment with cytoxan that involved IV infusion followed by oral x 7 months, plasmaphoresis, predisone with taper to total removal and had a 10 year remission.

Ask your kidney doctor what treatment regimen he is planning, but my guess would be the standard NIH if it is your first time.

Everyone responds differently to the treatments.  Your blood counts will need to be monitored closely, especially 10 days after the infusion.

I'm still on Cell cept and having no side effects at all, currently at 2000mg.  Hope you feel better and hope this information helps some.

You are quite welcome Amy.  Yes, my kidneys have flared again however the inflammation I have now is not quite as severe as it was 10 years ago (and 18 years ago when I had my first kidney flare....after the birth of my son). 

I have been told that the aggressive treatment is probably one of the reasons; as well as me being in menopause  (because of the cytoxan).  After about the age of 30 when you receive cytoxan there is high risk that your ovaries will be damaged.  This is why many doctors are using Cell Cept initially with younger lupus patients in child bearing years. 

I do not know at this time what percentage go into remission.  Treatment free remission is quite rare, and most doctors here in the United States will maintain some immunosuppression medications.  I was looking for a treatment that gave me a chance at treatment free remission..so I went for it.  I am happy to have had 10 years free from kidney or other lupus symptoms.  Even now, aside from my kidneys flaring, I have no other lupus symptoms, I feel totally normal...which is not usual for lupus patients.

My kidney function right now is in the normal range for clearance, but my protein level is in the 900mg level.  I did just recently do another 24 hour urine to see it the protein levels are decreasing with my recent start on Cell Cept...awaiting the results.  My serum creatinine continues to be in the normal range.  I do have a low white blood cell count which I have lived with since a teenager.  Whether this is due to lupus, no one really seems to know.  The amazing thing is that I rarely get sick...but it is a concern to my rheumatologist when we begin immunosuppressive treatment. I am currently on no prednisone, only Cell Cept, and I am hoping that this alone will do the trick for me.

I have been told that I have some scarring in my kidneys,  my doctor in Germany estimated about 50%.  I do know that you want to treat the kidney inflammation as soon as possible to prevent scarring.

Continue to educate yourself.  My rheumatologist here in the States did not agree with my decision when I went to Germany for the intensive treatment.  It was an experimental treatment, but now he states that there are some treatments, at John Hopkins that do perform more intensive chemotherapy...the risks are greater...I was willing to take the risk.  I was aware of the John Hopkins treatment chose the treatment in Germany instead.

Hope this helps.  If I can be of further help, please don't hesitate to ask.