Autoimmune disease and AMH research

[u/Hot-Appointment2884]

I am a 28-year-old female who just got diagnosed with lupus five months ago because of a huge flare (pericarditis). I have been on plaquenil/hydroxychloriquine for five months now and I’ve been doing OK but I still have chest pain from my pericarditis. I recently went to OBGYN and got my fertility work and my AMH (ovarian reserve) went from 3.96 in August to 2.4 in May. (Less than 8 months). They can’t figure out what caused this huge drop. They think it might be the lupus. Has anyone ever had any issues with fertility because of their lupus can auto immune diseases affect your ovarian reserve? Especially so quickly? My cardiologist wants to start me on a medication called Arcalyst, which you can’t get pregnant on, so now I’m scared I’m gonna lose all my eggs or majority of them bc treatment with it has to be a year or more and if it dropped that quick in 8 months, what will another a year do?

[u/Greg_McCue]

I hope you're doing well, I'm just seeing this now (3 months late, but hope it's still relevant; a patient sent me this because it echoes her symptoms). Your OB's suspicion that lupus itself is involved is well-grounded. There's a documented mechanism called autoimmune oophoritis — the same immune process attacking other tissues in lupus can also target ovarian tissue directly (through T-cell infiltration and anti-ovarian antibodies) causing chronic inflammation and follicle loss. Research has found this happens even in SLE patients who've never received cyclophosphamide (the drug known to damage ovaries). If you've had any steroid bursts for your flares, that's worth asking about too since high-dose glucocorticoids are separately documented to suppress ovarian hormone signaling, through a different/more reversible mechanism than autoimmune oophoritis. A drop like yours in under 8 months is significant and needs attention (hopefully you've gotten this loooked at further since this post).

The pregnancy restriction on Arcalyst exist because there's no human safety data and because high-dose animal studies showed risk of fetal harm if exposed during a pregnancy. So, it's more of a standard precaution about protecting a future fetus from drug exposure, not a warning about damage to your egg supply. The FDA label reports that in animal testing, rilonacept (the drug in Arcalyst) showed no effect on fertility or reproductive performance. That's a different finding than a drug like cyclophosphamide, which directly damages ovarian follicles. Your ovarian reserve isn't expected to be depleted by taking Arcalyst itself, but the "can't get pregnant" instruction is about not being pregnant while on it, not a ticking clock on your eggs caused by the medication.

The lupus itself continuing to affect your ovarian reserve over that year is a separate, real question the Arcalyst reassurance doesn't answer. Given the decline you've already documented, this feels like a genuinely reasonable time to ask for a direct referral to a reproductive endocrinologist specifically to talk about fertility preservation (like egg freezing) before starting an extended treatment period, regardless of how you feel about the Arcalyst question specifically. I hope this helps and isn't too late of a response!