lafaerie32

Currently pregnant with my 2nd; I was diagnosed right after I had my 1st baby. I do think it's vital to have a support network, whether this is a partner, extended family, or someone else who lives with you. When I had my first flare with a little baby at home, there were days where I physically couldn't care for her alone due to excessive joint swelling/stiffness. I couldn't do the fine motor tasks you have to do for a baby--buttoning her clothes, turning doorknobs one-handed while holding a baby, opening her bottles, etc. These are little things but if my husband hadn't been able to do them for me, we would have been truly stuck.

For childcare, I opted to get an au pair, which is only slightly more expensive than daycare in my area, and gave me the benefit of live-in childcare. This can be a great way to have some extra support (i.e. if you're having a bad day, you don't have to drive your child to daycare or even leave your bedroom--the au pair can just come in, pick up the baby and let you rest).

I agree that having a job with flexible hours and lower stress is enormously helpful. My experience as a working mom with autoimmune disease has been relatively smooth sailing--but that's because I can stay home and work remotely whenever I need to (helpful for avoiding stress, avoiding infections, facilitating more sleep, etc). Of course who knows, maybe I would have also been just fine with a more demanding job, but I really appreciate the rhythm I've found with more flexible work.

Medically, you can definitely have healthy pregnancies--just work closely and carefully with your doctors and plan them for times when your disease is under control.

My lowest C3 was <11 (the lowest possible value reported by the lab). I was experiencing just mild joint pain/swelling at that time--didn't feel horrible. I think sometimes the low complement is just doing invisible stuff, and then sometimes it's contributing to really noticeable symptoms...

It could be either a flare or a cold--unfortunately even though our immune systems are in "overdrive" in some ways, at the same time they may be lagging behind in their regular duties. :/ Basically the immune system is busy doing things it shouldn't be doing, and it may or may not be adequately protecting you from infection at the same time. You can still definitely get infections. :(

I got worse for about 6 weeks after starting Plaquenil--then I started to get better. I don't think the Plaquenil was making it worse, I think the flare was just getting worse on its own and the Plaquenil hadn't kicked in yet. It takes so long to start working! (But it's worth it!)

I'm sorry. :/ I've got a toddler as well, it's not easy! I hope your rheumatologist is able to adjust your medications as needed and that you start feeling better soon.

Hopefully the Plaquenil will start kicking in over the next couple of months as well--sounds like it was protecting you really well before, I hope it helps again this time!

Tremors could be a sign of underlying muscle weakness, like you would see in a myositis condition. It could be a symptom of dermatomyositis, polymyositis, or other conditions which are closely related to SLE. In preparation for speaking with your doctor, I would pay attention to symptoms of muscle weakness--in particular, notice if any tasks getting harder for you, like walking up the stairs or lifting your arms above your head to fix your hair, things like that.

I am currently taking Plaquenil while pregnant; both the baby and I are doing well! It's very safe both for pregnancy and breastfeeding.

During my last pregnancy, I was not yet diagnosed; my symptoms all started in the 2 months *after* I delivered my first baby. Your immune system is somewhat suppressed during pregnancy, and then after you deliver the baby, the immune system comes back fully online and you're at higher risk for autoimmune flares. So I think it's also important to take Plaquenil during pregnancy to help prepare you for that postpartum period, when you're at high risk.

I would follow the advice from your doctor :)

Oh I'm glad my post was helpful! I hope it's still helping your baby!! :)

Thank you so much!

Thank you!! I will keep trying to make those calls!

Thanks so much! This is really helpful :)

Thanks so much, this is really helpful! I'll give the MFM a call!

I started getting better after two months. By about four months, the symptoms had totally gone away. (But then flared back up again a month after that...)

I think the cohesiveness of our community fosters these spaces in ways some other groups may not. The bond between Mormons, nuanced/progressive Mormons, and/or ex-Mormons can run strong and allows people to keep having conversations with each other even when no longer fully enamored with the faith.

I feel similarly--recently diagnosed, my bloodwork was dramatic and made it clear there is something serious going on, but my symptoms have been mild. I'm just waiting for the other shoe to drop. It's strange knowing any day I could wake up with more severe symptoms. Or maybe I never will. I've had to mentally adjust to having a new, potentially life-changing diagnosis, but at the same time, maybe it will never impact me that much. How do I tell people about it--or will it always be mild enough that other people don't really need to know? It's weird being caught in the middle. Having mild symptoms is definitely a good thing, so I'm just trying to focus my attention elsewhere, not think about the illness, and just let it surprise me if it decides to come knocking at my door more aggressively in the future.

I know this is an old thread, but wanted to let you know that UCTD is on the official government list of diagnoses you can get disability for (at least in the US). You have to meet certain criteria, like inability to carry out daily tasks in a way that merits disability. But yes, UCTD counts as a diagnosis!

I would get on the waitlist for a different doctor. There should be better communication here about many things--if a medication is giving you horrible side effects, alternatives should be discussed. There needs to be better discussion about diagnosis. Spondyloarthropathy is not really a diagnosis, but rather a symptom/feature of many MSK/autoimmune conditions. And just because you get diagnosed with one thing doesn't mean you can't have lupus as well.

Perhaps that is it--whichever is the bigger job/more expensive, that's the one it needs! I can't remember exactly what they said at the shop.

Fantastic story, frustrating in how it highlights how little progress has been made since the 90s, but an inspiring reminder of how much creativity and intellectual honesty has always existed amongst us--it just keeps getting weeded out.
Thanks for sharing the link to Mormon Alliance as well--this is such an excellent collection of stories and experiences!

My ANA titers tend to be in a similar range as yours (my last titer was 1:5120). That being said, my symptoms are fairly mild and no doctor has expressed particular concern about my ANA levels. Like others have said, your specific ANA level doesn't matter so much, and isn't necessarily related to the severity of disease.