Chemotherapy for Lupus Nephritis

Hey everyone!

I am an 18 year old girl, who has had lupus for 18 months now. A year ago, after a kidney biopsy I was diagnosed with lupus nephritis class IV, and put on mychophenolate. However after 6 months of this treatment the protein in my urine refused to come down so I was told I had to start chemotherapy! I am currently doing the euro lupus regime (6 fortnightly doses of 500mgs of cytoxan). I have completed 3 doses which I am thankful that I handle well. However the protein in my urine has not started to come down yet and I am getting worried that it won't work! Has anyone had any similar experiences, and if so how long was it before you started to see some pleasing results?

Thankyou!!

10 Replies

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  • Hi I had protein in my urine had biopsy done and found only one kidney when scans were done so started chemotherapy straight away but I had cyclosimide (not sure spelt right ).protein levels started to show improvement by the fourth dose .I still have protein in my wee but alot lower they just keep an eye on it . I hope you see some improvements soon all the best .x charmaine

  • Hey thanks for your reply and well wishes! Did you recieve your doses monthly of fortnighty?

  • Hi I had fortnightly .

  • I'm afraid that I have no experience of this so can't offer any advice but would like to send you best wishes and lots of luck as it sounds like you are having a tough time. You sound like you are handling it amazingly well. X

  • Thank you very much :) I try stay positive, I'm lucky I have great support!

  • So far, I've had fairly good results with mycophenolate. My nephrologist told me she has had good results with lupus patients on Benlysta. Not sure about stage IV. Normally Benlysta is not used on patients with severe glomelularnephritis.

  • Yes I think my nephritis is too serious to start benysta and as the results for chemotherapy are better documented as it has been used for much longer, that was the path I had to take. All the best with mychophenolate!

  • When one is found to have Lupus nephritis Dr's will hit you with everything under the sun to protect your kidneys. Corticosteroid therapy should be instituted if the patient has clinically significant renal disease. Use of immunosuppressive agents, particularly cyclophosphamide, azathioprine, or mycophenolate mofetil is not uncommon. The purpose of these meds is to protect your kidneys and get them functioning properly again. It can take some time. If they are seeing no improvement, maybe ask about putting you on an immunosuppressive dose of steroids and possibly adding other immunosuppressive meds.

    Good Luck,

    Dr. S

  • Yeah I was put on 50mg of steroids with the start of both treatments, currently I am on 25mg which is being tapered off gradually!

    Thankyou for your response :)

  • You are quite welcome..........I wish all goes well for you. I do know it takes time though. I am not only speaking as a Physician, but as a Lupus patient as well. I had to retire a little early as a Neuro-Ophthalmolgist because I was diagnosed with all 3 types of Lupus, SLE, Discoid and CNS. My fatigue was so overwhelming I could not even get out of bed at times.

    Wishing you the best.

    Dr. S.

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