Lupus Medication: I have had lupus for 16 years and... - NRAS

NRAS

36,995 members45,714 posts

Lupus Medication

littlemissp profile image
4 Replies

I have had lupus for 16 years and have been struggling during this time with different drugs and their side effects. I have retinopathy caused by Chloroquine so cant take that. I am getting really worried as I am quickly running out of options. My rhemy is now suggesting Rituximab and Ciclosporin. Has anyone had experience of these drugs and what side effects did you have? I really want to stop all meds now but am so scared of how I will be without anything !

Written by
littlemissp profile image
littlemissp
To view profiles and participate in discussions please or .
Read more about...
4 Replies
bubblyalex profile image
bubblyalex

No idea I’m sorry but I did a search when I was asking about side effects of Sulfasalazine in the search bar.

HappyD34 profile image
HappyD34

Hello, I’m sorry I can’t help you I have no experience of these drugs but chat through with your rheumy it ask for apt / tel consult with your consultant. The fear of the unknown is very unsettling, I wish you all the best , big hugs and stay strong x

Lolabridge profile image
Lolabridge

Hello. I have Truxima infusions (a biosimilar to Rituximab) and they have been a game changer for me. I have R.A. but had bad reactions to the usual DMARDS. I’ve not had any adverse reactions to the Truxima (that I’m aware of) and am longing for my next infusion which has been postponed because of Covid. I hope others will reply and reassure you too.

Summerrain14 profile image
Summerrain14

Hi, I have RA and lupus too but I’ve not needed these medications so can’t help I’m afraid. May be worth posting on the Lupus forum of Health unlocked to see if anyone has any experience of these meds. Hope you get some useful advice. Take good care. x

Not what you're looking for?

You may also like...

Stills disease or other arthritis pain

Adult onset Stills disease diagnosed aged 17 in 1979 now 62 and not on RA drugs just pain relief...

Methotrexate and adalimumab

I have been using adalimumab for 3 years for my Ankylosing spondylitis and it has been great for my...

Hydrotherapy pool?

Hi. I'm lucky enough to be going on a cruise, as I can't fly now as it causes too much pain, and...

Alendronic Acid

I have been taking the above for 5 years and until a visit to my Dentist to have a loose tooth...

Olive oil

Having watched the session on inflammation and diet I have started on Olive Oil 10mls daily....