Rituximab for SLE inflammation on the brain, please help not sure whether to accept???

[KerrieB]

Hi all, my mum is being offered rituximab for her brain inflammation, she has SLE and is on steroids along with mycophenelate. She also has vasculitis. She doesn't seem very different in terms of brain function, maybe a bit more confused now days but it's hard to say. I'm worried about whether she should take the new drug, it's not licensed for SLE yet. We havnt been given an alternative. I know she's fed up at the moment. Has anyone gone through having inflammation on the brain and/or taking rituximab. Thank you so much for your time.

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I get to hear about IVIG and/or plasma exchange helpful in some CNS Lupus.

[joannebond360]

Hi.

I don't have inflammation on the brain as far as I know but I am on rituximab.

I was also apprehensive about taking it, infact I was petrified! I was so poorly that I didn't really have much choice, tried all the other usual immune suppression meds and had side effects and reactions to them.

Had two infusions at Christmas time and I have got to say I am feeling pretty good! Reducing steroids and definitely feeling the benefits. I will now have another one in June.

In my clinic alone at my hospital there is about 40 people on it and they have all been fine. It's reading about it that scares the life out of you.

Good luck to your mum and yourself.

Jo

[Sallyk21]

I haven't been on it myself but I'm currently in hospital where a 'stream' of people come and go after having the infusions. I was chatting to some of them and they said the infusions really made them feel better and especially when inflammation in the brain is involved. Like I said I don't have actual personal experience but I've been sat here for five days watching one person after another having the treatment x

[zzcat]

Yes Kerrie, I have vasculitis, RA as well as Lupus and APS. I have been on Rituxan for more than 2 years and call in my wonder drug with excellent results. It is not for everyone and is a very strong drug, having said that, if it works for you as it did me, it can be life changing. I have been able to reduce all my other meds. I get an infusion every 2 weeks, then off 3 months, then every 2 weeks, and so on.

The effects are so strong that I can tell when I am a month out from needing an infusion.

Good luck to you and I hope you have as good a result as I have. Any other questions, feel free to ask!

Susan

[Maureenpearl]

I have cerebral vasculitis and mixed connective tissue disorder (lupus) with lung involvement (pulmonary fibrosis).

My consultants tried to get the funding for Rituximab but I was turned down each time. I even went to see my local MP but he did not do anything only agree with the funding people after I left him.

The consultants (Respiratory and Rheumatologist) were trying for the drug for the lung involvement. The last time I saw them four months ago they did say they would try base on the pain I'm in and the vasculitis but I still haven't heard anything yet.

I have an appointment for tomorrow so praying for a good result. I do use ambulatory oxygen and I am fed up of that, its like having your'e picking up your shadow and carrying it around.

Hope you are able to decide whether to have the drug as I was trying to say that it's not been offered to all because its still on clinical trial and quite costly.

Hugs and kisses