LUPUS UK
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SLE: current and future treatments

Hi everyone,

My sister has SLE and was diagnosed around 7 years ago.

I'm a medical student and I am trying to raise more awareness of SLE, since it took a long time for my sister to get diagnosed (and I'm sure it was similar for many of you).

I am currently researching and preparing a presentation to present to my peers at my medical school on the current and future treatments for SLE. Can any of you suggest any current treatments that have helped you manage your lupus and prevent flare ups? Or have any of you been part of clinical trials for treatments that look promising?

I would love to hear from you!

Thanks!

Maria

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Hi there

My son was admitted on his 18th in September this year after collapsing at home. he gas been ill for two weeks. Turned out he had SLE with lupus nephritis grade 4. He spent a week in hospital and was very unwell. Hb 7, pyrexial, bp 80/40, weight went from 57 to 51kg

He was commenced on oral pred 50MG daily and woukd have possibly started on IV cyclophosphomide but Highland NHS don't have somewhere to bank sperm immediately ( have to book a slot in Aberdeen well in advance such is miles away) so he was started on mycophenolate half dose and after a week was at 1G twice daily. After discharge and discussion with Prof lightstone in London (lupus expert) he was given 3 pulses of IV methylpred 500MG on three consecutive days. And a few days after this got IV rituximab. Two weeks later he got another dose of IV rituximab as per guidelines.

So he pretty much got the drugs that the lupus guidelines state for grade 4 LN.

He is heading towards remission now. Not quite there but finally no blood in urine and just a trace of proteinurea. bloods improving every week

On a reducing dose of oral pred. Got down to 5MG within 8 weeks and going to get to 2.5 by end Dec.

He is back competing in his bike and gained all his weight he lost. He has no symptoms at all so the drugs seem to be doing their stuff.

Hope this helps!

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Hi,

Thanks for your reply - that's really helpful for me! I'm glad to hear he's doing much better after such a difficult time for you and him and glad to hear his lupus is now well controlled.

Thank you!

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No probs. If you want more info message me x

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