Helo everyone,
Has any one had the above chemo treatment for Lupus? Did it help? My doctor wants me to havr it. I am a bit concerned because of the side effects, bladder cancer and other csncers. How save is this? If anyone gas experience of this I would love to hear your views. Thank you so much.
Hi annben, I had cyclohosphamide 20 years ago when I had a major flare at 12 years old. They had tried controlling the lupus with 50mg of prednisolone, azathioprine and plaquenil but it wasn't working. I had one IV infusion each month for 7 months. The first was 1mg and I vomited a lot during but was OK after 24hrs, but quite a bit of hair fell out. For the next 6 doses they reduced to 0.75mg and also put me on saline for two hours before and 24hrs after and made me drink as much water as they could force into me, and this helped reduce the nausea. We also used an ice cap on my head to reduce the hair loss.
It was a bit rough but it did work and my lupus went into remission for 20years. I am right now having my first flare since then.
There are other options now though, that weren't available then. Have they spoken to you about rituximab and methotrexate?
Hi , when you were in remission did all your blood results show negative for lupus ? Have you still had to take the drugs for your lupus for 20 years x
I was still on 5mg of prednisone and plaquenil for another 8 years and mostly blood results were negative or only mildly out of range over the years. There is also some risk of infertility but I guess they work out the right dose to prevent this.
Also I'm almost bald from this recent flare so maybe I was particularly susceptible to hairloss on cyclophoshpamide. 
So remission were blood results are negative is possible then , that's interesting . My renal consultant says I am in remission from a renal point of view , he has come to this conclusion because since I have been taking ibersartan the protein has stopped leaking into my urine , he said the fact that the ibersartan has done that shows chronic kidney disease rather than lupus activity . Why would I have chronic kidney disease without lupus doesn't make sense to me kidney biopsy 14 years ago showed stage 3 lupus nephritis with irreparable damage . My results are all still positive , positive ANA , positive RO , raised dsdna and C3 so how can I be in remission ? And they say I will be on steroids for life and immunosuppressants I just don't get it .
Hi Annben I had 6 months cyclophosphamide pulse treatment last year for my lung condition which is secondary to my Sjogrens and it was ok, a few days following the dose I would feel a bit rough and tired. They should give you drugs for sickness etc., they worked for me. Best of luck 🌺
Yes I had it years ago for 3 months , they give you a tablet to take first to protect against the bladder cancer . I was fine but I insisted they give me anti sickness drug prior to treatment and I didn't have any sickness nor hair loss , i would only agree to 3 months of it though not 6 months they wanted to give . There was a post about this recently if you search cyclophosphamide you should be able to get it up .
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