Advice about autoimmune disease.
TW: living child
TLDR: seeking advice about how to understand when autoimmune disease is under control before trying
I have been going to doctors with autoimmune symptoms since 2011. Mostly they all dismissed me as being too stressed. Some even suggested I was a hypochondriac or depressed. I listened to them and worked on my mental health and stress management. Then in 2023 we began to try for our second child. We have lost so many pregnancies. Two were 9-10 week losses and confirmed to be genetic (trisomy 22 and partial molar) and the other five were 5-6 week losses, assumed to be implantation issues. They all happened in about 14 months and the only thing they could find was a high positive ANA. I was sent to a rheumatologist who wouldn't treat me because I wasn't a serious enough case and because at the time all antibodies came back negative. I convinced my OB to prescribe plaquenil and heparin. We started to try again for a couple of months this spring and so I found another rheumatologist and got more testing done. Turns out I have a strong symptomatic case for sjogrens and I have antibodies for lupus and rheumatoid arthritis and borderline positive APS. editing to add: i haven't been officially diagnosed with any of these as you need two positive tests I over 12 weeks, but the results along with my hustory were clinically significant.
I've read we should wait until the "disease is under control", but I'm 38 and time isn't really on my side. I ovulate pretty much like clockwork, but the genetic issues we've experienced make me think my ovaries may be affected by the disease. I'm honestly scared of losing another one or going longer.
Does anyone have experience with this? I've heard that autoimmune diseases can kind of start like roulette until they settle on one disease that ends up dominating, but I can't understand how to navigate this.
Any advice on how to do this safely would be appreciated.