Does anyone have any experience of being treated with cyclophosphomide for lupus nephritis please?

[largesse]

[sylviaweller_79]

Hello. Yea I took that and I felt fine but I had allergic reaction to it and it wiped all my white blood cells out and I got 2 very painful blisters, one on my finger and one on my neck. Sorry I can't help.

[largesse in reply to sylviaweller_79]

Thanks it's good to know how different people react to it

[ijeasike]

Yeah, I had that 2 years ago, it helped keep my kidney under control. I didnt really react to it just abit of sickness feeling few days after the infusion. U may loose abit of hair, but it will grow back. take care and God bless.

[largesse in reply to ijeasike]

Thank you. It's my daughter who is about to have the treatment. Her consultant said she wouldn't suffer hair loss, just hope that's true. Hope you're keeping well x

[Leewon]

I've had the treatment twice now, 10 years apart. It is much better now and a much shorter course. Makes you feel a bit sick but you should be given anti emetics that should counter these side effects. Hair does fall out but not like the old regime as this dose is much nicer and calculated on weight rather than dosage alone. Gave me an itchy nose and a strange feeling headache without the pain. Makes feel like you need to sneeze. It also makes you feel knackered and washed out. Receiving it however, is straight forward. Needle in the back of the hand, 1 hour in fusion, a short infusion of stuff that protects your bladder and it's done. I think it was 6 doses 3weeks apart. You need regal bloods to monitor your white cells and kidney function. It's not as bad as it may seem and hope it all goes well for you, take care

[largesse]

Thank you Leewon. Hopefully my daughter will come through it fairly well. All the best to you x

[MandaM]

Yes I had 5 months of IV Cyclophosphamide on an Oncology unit back in 2000 when I was diagnosed with SLE/first stages of kidney failure (Glomerulonephritis). I can remember feeling week and had a metallic taste and smell. I felt a bit sick too but nothing else. I should have had 6 doses but got fed up with it and refused the last dose. It seemed to slow things down with the kidneys until I was desperately ill, but still working, refusing to give in with createnines at a level of 1600! That took until Jan 2005 when I gave in to dialysis and the following year a transplant from a friend. 2014 still going strong. Your daughter will get through it all ok i'm sure, especially with your help when she's feeling a bit tired. The only time I've had off work through all this upset was at the beginning of dialysis having the ops for this to be possible & for a few weeks after transplant and even then I worked at home, I couldn't stand the boredom. You just need a strong mind to cope with what Lupus throws at you and try to carry on even if you feel like you're on your knees. My motto is to kick the backside of Lupus! x

[largesse in reply to MandaM]

Hi MandaM thanks for your answer. I'm sure she'll be ok. More worried about hair loss to be honest. She's been so through so much - like most of you. Good luck for the future

[MandaM in reply to largesse]

Hi I didn't experience any hair loss through the treatment. Although I have lost a huge amount of hair once I put this down to the anniversary of a grandsons passing. One year it was little patches, next year again little patches and the following year, mega amounts. Although I am EXTREMELY hair fixated it didn't bother me, I shaved off the rest to a grade 1, bought lovely wigs mostly from Trendco and had fun with different styles and colours until my hair grew back. I even used the wigs to grow my hair into a feminine style as I'd been short and funky/spikey for years and could not get pass certain stages of growing without chopping it all off again. I have lovely hair now. It's just a case of taking it in your stride, thinking there's nothing I can do about it and celebrate the freedom from having to wash, blow dry and style your hair every morning. Boy do you get out of the house quickly AND an extra hour to be had in bed ;0D

[JenniferZhou]

Hi,

I had 6 doses at the end of 2012. I was 19 at the time and in my second year of university. The cyclophosphamide itself i tolerated pretty well for the first 3 doses. Just nausea, hot flushes and dizziness during the infusion (which only took about 10 mins) and for about 15 minutes after. My last 3 doses i didn't tolerate as well, and felt pretty awful afterwards for a couple of days. Kinda flu like symptoms and a lot of fatigue. I've been relatively symptom free since then (about 18 months) apart from some ongoing proteinuria which i've just had a biopsy to investigate further. Overall, the meds weren't as bad as i thought they were going to be, and i don't think it really affected my life/uni too much as i'll be graduating next week with a first class honours!

I hope your daughter responds well to the meds and wish her all the best

[largesse in reply to JenniferZhou]

Thanks for that Jennifer. My daughter had to drop out of uni because she was so ill but is hoping to do a part time degree soon. Well done for getting your degree you must be so proud. I wish you every success for the future