Wondered if anyone could help by sharing there experiences with Cyclophosphamide?
I have SLE and now Lupus Nephritis, I have had bad illness this year first sign of organ involvement in May when bloods showed my Kidneys were leaking protein (biopsy in september showed stage 3 verging 4 damage). my methotrexate was increased to 20mg weekly, in July I saw my rheumatologist after getting migraines/nausea/sun sensitivity I have literally been confused since then! after admitted to hospital in September my mouth went numb and brain shortly shut down MRI scan showed inflammation in my brain treated with 45mg prednisolone a day with 750mg MMF (a previous higher dose of MMF was affecting my liver). my brain is functioning better since September but last week numbness in my mouth again and slurring speech new areas of inflammation showed on MRI scan. scared that I could have a stroke at any time.
now on 60mg prednisolone and Drs want to change MMF to a stronger treatment- IV cyclophosphamide fortnightly for 6 months reducing the steroids over time. Drs have informed me that this drug can make you infertile I am only 25 and have not had children they recommended that I freeze my ovaries (new drug not sure of name yet) its all a lot to take in.
any advice at all would be much appreciated