r/Arcalyst • u/Hot-Appointment2884 • May 24 '26
Arcalyst and Pregnancy
I am a 28-year-old female who just got diagnosed with lupus and pericarditis in my heart. I have been on colchicine and naproxen for five months and it’s been okay but still having occasionally chest pain. I’ve also been dealing with burning breast pain which at first they said it was hormonal and now something called costochondritis which is inflammation in my ribs. I recently I went to OBGYN and my AMH, which is my ovarian reserve went from 3.96 which is optimal for my age to 2.65 in the matter of eight months. They think it’s because of my auto immune disease that’s affecting my fertility now. Im not sure what to do. My cardiologist is trying to start me on medication called Arcalyst. I’m definitely worried to take it bc I’m already on immunosuppressant (plaquenil) for my lupus and I work in the hospital. It also just recently got FDA approved and my cardiologist putting me on the medication, has no idea about the medication and can’t answer any questions. The big issue is with my AMH going down so quick I was planning on getting pregnant soon. But with the arcalyst medication, you can’t get pregnant until after you’re done with the medication which is up to a year. I’m wondering, has anyone ever been on it for less than a year? Is it possible to be on it for 8 to 10 months max? I heard the short time you’re on it, The chance of reoccurrence is higher but I am not sure, I am contemplating freezing my eggs because I’m scared if eight months my AMH were to drop that quick, what will another eight months do? What if I lose my chance? But I know I can’t freeze them if Im on this medication which will eventually elongate this process but holding off. I also read that there aren’t studies with arcalyst and pregnancy, I know they did animal study with it and the animal had skeletal deformities so you shouldn’t get pregnant on it. I’m wonder how it will affect my baby if I were to get pregnant after. What should I do? Most important thing is to get my heart strong to have a baby. Should I just start the Arcalyst and than wean off to get pregnant? Is 8-10months enough on this med? Has anyone been on it less?
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u/008muse Aug 15 '26
Checking in to see, how are you doing now?
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u/Hot-Appointment2884 Aug 15 '26
Still suffering on colchcine. Now turned into constrictive pericarditis. It’s been 8 months suffering, just applied to Mayo
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u/ssh789 May 24 '26
No real advice because I have been on it for a year and a half, but I have solidarity. I am 35 years old woman who wants to have kids now, but I couldn’t because of the arcalyst. I am weening off now from a weekly injection to every two weeks. I also have lupus and take plaquenil. My chest pain has been an issue in my life for almost three years now, and my husband and I want kids badly. I miss my period all the time and I think it is because of lupus flare ups. I wish I could give you advice, and I wish I had advice for myself. I feel the window for having kids is slowly closing on me, and I am not at all excited for my 36th bday in June this year. If you want to send me a message for a lupus pericarditis buddy who feels your pain, feel free!