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!!
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Lilly25
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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
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
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.
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.
Hi lilly! My son was diagnosed 2 weeks ago and has a grade 4 too. He got the 50MG orally initially for a few days then whacked with 500MG IV methylpred, 3 doses as per protocol.
Now on 25MG pred.
He was started on mycophenolate and now on 1G twice a day. He started on IV rituximab last Tues and getting another after two weeks. Last urine dip looked less protein but it needs to be sent for protein creatinine ratio to very more accurate. Also not sure what his creatinine in his blood is. Will find out Tues. It's good to read of another young person cos I feel fin is on his own a bit being so young (and also a boy!). I think his youth means he is insanely positive about it all!!
Were you considered for rituximab?
Are your kidneys scarred?
Best wishes for a good recovery lily. It's a hideous disease but very individual. So I pray that you control it rather than it controls you xx
I too had Cycophosphmide, again not sure of spelling. It was 20 years ago so don't remember the frequency. Used to say in hospital for 24 hours whilst they administered it.
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I try stay positive, I'm lucky I have great support!
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