IV infusions and CNS Lupus

[Queenie70]

Hi,

I haven't been on this forum for many years after my lupus symptoms settled down on hydroxychloroquine. Unfortunately since the end of last year I have had a flare that has caused problems with my central nervous system. I didn't tolerate Methotrexate, Azathioprine and got a rash with Mycophenolate. All this time I have been up and down the steroid ladder - and have been taking 30mgs for sometime now. I now look like a chipmunk with chubby cheeks and want to cry every time I look in the mirror. I had no idea I was this vain!

The latest plan is to have a course of IV steroids and start IV Cyclophosphamide in the rheumatology day unit in Bath. I just wondered if there is anyone else out there with CNS lupus or anyone who has had biologic infusions that would be happy to share their experiences with me. I'm feeling a bit lost and although family are kind, no one really understands this 'hidden illness'.

Many thanks in advance

Lisa

[Jmiller623]

Yes. I have a few cranial nerve neuropathies and dysautonomia. Immunosuppression never really helped me. I went on IVIG for multifocal motor neuropathy and it seems to have helped. I don’t have seizures or anything. Everything is peripheral for me. I also have horrible brain fog.

I feel you on the steroids. I went through something similar. Gained 30 lbs and still working to lose the last 10 and it’s been 2 years since I I’ve touched high dose steroids. I don’t have any personal experience with cyclophosphamide but I’m hoping it helps you.

Sending hugs. ❤️xx

[gmm55]

Dear Queenie, I’m sorry to say that I chickened out of taking Azathioprine as I was very uneasy about all the nasty side effects it can have. However, I see my Gastro Consultant in April regarding my Crohns colitis and, having had several severe flare-ups, may well give a try. I’m not happy with having to take steroids every time I have a flare-up. I’m very sorry not to be of further help to you. I wish you good luck with your health issues and hope you have a Merry Christmas and a Happy and Healthy New Year 🎄🎅🏼🤗