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Thread: Hello...!!

  1. #1
    Join Date
    Aug 2008
    New Zealand
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    Default Hello...!!

    Hi there,
    I'm 22 and was diagnosed with lupus in may last year and have just found out that I also have stage 4 lupus nephritis. I have just started my first round of cyclophosphamide and will need at least 5 more before I will know if this has helped. I would love to hear from anyone else that is or has undergone similar treatment and how it went for them?
    I was not keen to start the treatment because of the many side effects, one being infertility, however my doc told me about an injection that puts your ovaries into a sort of 'sleep' state which is thought to protect them. has anyone else heard of anything like this?
    Hope to hear from you!

  2. #2
    Join Date
    Jun 2008
    Thanked 1 Time in 1 Post


    Hi Emily,
    Welcome to the forum. This is a great site with a lot of good folks that come in here. They have a lot of imformation and they are very understanding.

    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

  3. #3
    Join Date
    May 2007
    Thanked 169 Times in 95 Posts


    Hi Emily...

    Welcoming you with open arms...How are you treatments going? Sorry, I missed reading you earlier...

    I have no experience to share though, but I think maybe the drug used to suppress your ovaries is Lupron.

    They use that drug for Invitro too. I tried Invitro two times, wasn't successful..sigh. Lupron was apart of the process to control my ovulation...then Gonal F to lay the eggs. Cluck, cluck...

    Again about the boards, do a search..maybe one who has the same procedure may have not seen your post yet.

    Be well....hugs,

    I just a quickie search and here is a post from our Dear Saysusie regarding reads...

    Class III (and even Class IV) lupus nephritis has been successfully treated with Prednisone alone and patients have gone into remission after treatment, so it is a bit premature to feel that there is no hope with Class III nephritis (be it proliferative or diffuse) and some patients have had no recurrence of nephritis during follow-up periods of 30-40 years!!!

    The initial treatment of Class III and IV, focal and diffuse proliferative nephritis, is usually with prednisone, 1 mg/kg per day or equivalent, for from four to twelve weeks. If you show significant response with reduction in proteinuria, leukocyturia, hematuria, anti-DNA levels and resolution of hypocomplementemia, the amount of steroids are tapered at one to two week intervals by initially 10 and then 5 mg increments. When your renal disease becomes stable, you will then be monitored for any recurrence of active lupus renal disease. Should you relapse, your doctors will again treat you with additional courses of prednisone. If you do not show significant response with the prednisone, your doctors may consider using cyclophosphamide. Sometimes, with Class III and Class IV, doctors will initiate treatment with cyclophosphamide and Prednisone simultaneously, especially if your biopsy shows an elevated level of chronicity. Cyclophosphamide is administered at a dose of between .5 and 1 gram per m2 of body surface monthly for six months. Each subsequent dose is gradually adjusted upward or downward by 10-25% to achieve a nadir (low point) white blood cell count at 10-14 days of approximately 3,500 per cubic millimeter.

    As I said earlier, using prednisone and/or cyclophosphamide and led to remission of proliferative nephritis

    It is also notable that the effectiveness of cyclophosphamide is best when used in patients previously treated for their renal disease with Prednisone.

    Prednisone and cyclophosphamide therapy for proliferative lupus nephritis is usually effective in between 60 and 90% of patients. However, there will be patients who will prove unresponsive or relapsing and will present withr hypertension and active urinary sediment. These patients will require intensive treatment with monthly dosing of cyclophosphamide, the addition of higher doses of glucocorticoids which can consist of either 1 mg/kg per day of prednisone or equivalent, or pulses of methylprednisolone such as 1 gram per day for from one to three days. The combination of methylprednisolone and cyclophosphamide on a monthly basis in these patients has proven to be very effective.

    Alternative approaches to patients with proliferative nephritis would include initial therapy with prednisone plus azathioprine, prednisone followed by azathioprine, or prednisone plus cyclophosphamide during the six month induction followed by maintenance with azathioprine.

    In any scenario, it appears that no matter the seriousness of Lupus Nephritis, treatment has proven to be successful and many patients do not relapse. Do not lose faith, assist your doctors in treating your class III nephritis vigorously so that you can attempt to be one of those who achieves remission and remains that way for 30-40 years!!!
    I have Lupus. So *^#@! what.

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