Anyone doing Euro Lupus protocol? (Low dose cyclophosphamide)

[Tired-in-Toronto]

Hello to everyone out there! I’m new to the group - seeking advice from those who have undergone the Euro Lupus Protocol? This is cytoxan (cyclophosphamide) treatments by IV every other week. I understand infusion treatment takes approximately 6 hrs. Sounds very looong to me! What does one do all that time? Any ideas other than read books and check emails. (Can we sleep during this?). Also will I be able to drive home? And do I need to hire help at home or will I feel alright?

[Hidden]

Hi there, hope you are doing ok. I had 6 doses of cyclophosphimide and i just read the newspaper or watched tv during this. I was in hospital for most of them so just lay back on my bed afterwards but the times I did go home I got a lift as you just don't know how your body is going to react to the treatment as I only felt bad and was sick on 2 of the occasions the rest of them I was just tired and wanted to sleep. Hope this helps, any other questions feel free to ask.

[Finn523]

I’ve never done the cytoxin infusions for Systemic Lupus. I get Rituxin infusions twice a year which last about five to six hours. It helps me out tremendously! I was started on it due to the Lupus causing swelling around the lining of my heart (Pericarditis). It is under control.

Best wishes to you 🙏

[Bakbre]

I have Rituximab infusions every 6 months. It is a 2 part process. The first part is for 6.5 hours and the second part is a fortnight later for 4.5 hours. It is given in the infusion suite at our hospital and we are on very large & comfy reclining beds/chairs. There is 7 of us in there, some on the same as me but others are on different infusions, fortnightly ones, monthly ones etc. I mostly read or sleep. Luckily I have had no bad reaction to it apart from being very tired for about 3 days after. My husband always comes to pick me up though just in case! I call it my miracle medicine, because it has been the only thing that has worked (fingers crossed!).

Good Luck!

[Finn523 in reply to Bakbre]

I’m very happy to hear the Rituxin works for you too! 😊👍🦋