I really need your help. I have lung disease caused by lupus. currently my lupus is not under controlled and my lung capacity is diminishing. I am currently on prednisolone and hydroxychloroquine. The docs have advised me to have IV Cyclophosphamide, however I am very anxious about this as I have previously been on Mycophonolate and Azathioprine, both of which are chemo drugs and have had very bad reactions to them. With Azathioprine I was in and out of A&E because it caused my blood pressure to constantly rise above 220 with a pounding heart rate rising above 130bpm and I could not function. I am hypersensitive to drugs and can only take certain brands of the ones I can tolerate . in view of my past experience with previous chemo drugs, my fear is that I will have a severe reaction to it and cause damage to myself. once the drug is in my system if I have a bad reaction I cannot get it out. The docs hope the infusion will kick my lupus into remission, although there is no guarantee of this and it may only be a short term fix. The other alternative is to increase my pred, but it may not reduce lupus and there are long term consequences of doing this.
I would really like to hear from anyone with experience of having Cyclophosphamide, the side effects and any alternatives they found helpful. I would also like to hear from anyone who may have any insight into my situation.