Cyclophosphamide

[Vrainbird]

Hi I am Vasculitis. Peripheral Neuropathy, and Auto Immune Encephalitis

My Immunologist and Neurologist put me on Cyclophosphamide for two years and without this I wouldn’t be here as well as I am today.

It can be tablet or via infusion. I had both as didn’t live in the same city as my medical team.

I hope this helps.

[Barnclown]

Yes, it does help, thanks.

Hope you don’t mind me asking:

Are you still having IVIG?

(Cause I saw you were on your previous post 3 years ago)

If you are still on IVIG, @ what frequency & is this a neuropathy dose (ie higher than an Immunodeficiency Disease dose: 25-30g IgG serum 3-weekly)?

(For what it’s worth, I have simultaneous autoimmune & connective tissue comorbidities + panhypogammaglobulinaemia & chronic intestinal failure. My lead clinicians are @ Rheumatology’s lupus&vasculitis clinic + Immunology’s PID clinic + Gastroenterology Feeding Issues clinic and am on exclusive enteral nutrition for a CTD/AID/PID-related neuro/vascular GI enteropathy)

Wishing you 🍀, with ❤️, Coco

[Suzym2u Moderator Vasculitis UK]

My husband John was given both...IV and oral Cyclophosphamide. I hope you were given medication to protect your bladder. ??

[Mon82]

Hi there’s not very many information online regarding this topic.

I have recently been diagnosed with Vasculitic neuropathy and started on a course of Cyclophosphamide. I have just had the the 2nd round. I feel awful with body aches. I have a few questions:

1. When does it start to work?

2. Did it stop your period?

3. Did your hair fall out

4. What areas did the vasculitis affect?

I’m just in the dark at the moment

[lesleyg]

Hi, I have Behçet’s disease and was given six months of intravenous cyclophosphamide, and didn’t lose any hair at all. In fact I had very few side-effects. Lesley