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I keep wondering why at first my labs looked great, and now they're back loud and I experience a lot of joint pain 😢
My UPCR went from 479 to 1603 in less than 30 days and my new kidney specialist is on it!! He said this is something we must take serious, meanwhile, the rheumatologist said "minimal disease activity". I am looking for a new one, it's just a process...
Why is it taking benlysta so long to work?
I've been on it for 4 months even though I experienced a gap in treatment.
Learn more about the drug treatment mentioned above.Answer Summary
Members rallied around a question about how long Benlysta takes to work, sharing that it can take six to eight months, and some saw... Read more
I’m also on the Benlystra infusions since 4 months now and I’m feeing the difference in my joints and hair. So we’ ll see what happens in the next few months..🤔💜💜💜
FYI, the 4th and newest option for lupus nephritis is obinutuzumab, approved just last year. So Cellcept has been used for at least 30 years, Benlysta was approved for nephritis around 7-8 years ago, and voclosporin in the last 5 years.
Hubby's nephrologist has mentioned Benlysta as a potential down the line and seeing how long it takes to work - I'm going to push for it, as long as she thinks it's still a good idea. Thank you all for sharing!
@A MyLupusTeam Member I keep hearing MTX causes a lot of GI issues, these began before the MTX which is so interesting. Also, yes that's the goal to completely go off MTX. It's just the joint pain is severe without it, and I've had so many steroid tapers.
The new nephrologist is really on top of things even with him being new. I am grateful he stepped in immediately!
I will have my endocrinologist run thyroid panels, just to make sure.
Thank you for your wisdom!
Hopefully, the MTX is the main cause of the nausea and upset stomach and goes away once you're off it (which I think is part of the plan, right)? MTX is notorious for these kinds of side effects. Autonomic neuropathy (neuropathy involving automatic functions) can occur with lupus, and it sounds like your nephrologist is really on it! That's great!
Just in case, please ensure that you've had your thyroid function checked fairly recently, Empress, as we are more prone to autoimmune (Hashimoto's) thyroid disease, which can lead to an underactive thyroid and constipation. I hope you get relief soon.💜
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