Lupus treatment options advice please?

[Andfiona]

Does anyone know what treatment options are for lupus if Azathioprine plus prednisolone are not controlling disease activity? (V low c3 and c4, dsdna above 120, est raised) plus ast high and Egfr low? Thank you. I will speak to rheumatologist but just wondered if anyone can share their lived experience? Thank you so much

[whisperit]

Hello Andfiona

My distinct impression is that Hydroxychloroquine is the usual immune suppressant on first diagnosis. It has a reputation for being well tolerated. Have you been tried on that? x

[Andfiona in reply to whisperit]

Thanks for replying so quickly. Yes been on hydroxy for 4 years. Currently on Azathioprine and Pred too but bloods are getting worse not better over past 6 months and now it’s impacting on work as I’m quite sick. I’m wondering what’s next if Azathioprine not doing job on maximum dose. Thanks

[whisperit in reply to Andfiona]

Ah, OK. I've only had HCQ and aza too. Melba1 used to be a fan of rutiximab - she might want to add her current thoughts? x

[Bebe76]

I was initially put on azathioprine but it did not control my lupus and it raised my liver enzymes. Eventually I was switched to mycophenolate mofetil (brand name Cellcept) which has worked well for me for the past 5 years. I was (and still am) also on HCQ and low dose prednisolone.

[Andfiona in reply to Bebe76]

Thank you so much for replying that’s v helpful.

[Melba1]

Hi, I think it’s a case of us all being so different in what works and what side effects of each drug etc that it will be probably be a case of trying something else or your rheumy upping the dose of pred or azathioprine. What doses are you on at the moment for those? I find pred a pretty magic drug but also hate being dependent on it!

The other ones lots of people are on are mycophenolate and methotrexate. I’m on methotrexate injections and I think it helps me. However, we’ve tried going below 10mg steroids several times and I’ve reflared badly each time and I think a minimum amount of steroids is necessary for some of us - at least for a while.

Depending on what organs are involved, how bad your symptoms and if you’ve tried 2 immunosuppressants that haven’t worked then your rheumy might be able to get you one of the biologicals (benlysta or rituximab). These don’t seem to have many side effects in many people and lots of people say they feel better. I’ve just had my 4 infusion and think it worked well last time. Again hard to know when you have multiple drugs at the same time which one/ combination/ all are having the positive effect - not a very scientific way of doing it all at once but the only way I suppose when you’re really poorly and need to get it quickly under control.

Do you have a good rheumy who will discuss it all with you?

X

[Andfiona]

Thank you so much for responding. Yes good rheumy and dermatologist but they often have diff opinions. I’m feeling so much better having upped the steroids I didn’t realise how ill I’d been feeling and for so long too. Tapering now to 10mg pred and 100mg azathioprine plus have been on 200 HCQ and 400 HCQ since diagnosis and still feeling better than I was! Was on 10mg pred before azathioprine though so not sure it’s adding value. How are you doing?