Managing autoimmune diseases during pregnancy

Hey everyone 🙂 ,

I'll try to keep this quick. So, basically... back in 2003, I had this massive health "episode." All my joints just locked up out of nowhere—mostly my hands, fingers, and then my ankles. Even the simplest little things felt impossible, like just turning a key in a lock, it was a total nightmare 😁 .

They ran every test under the sun for autoimmune stuff, from MS to lupus, before finally landing on a "suspected" case of sarcoidosis. It wasn't even a definitive diagnosis because my levels were just barely hitting the threshold...

I was put on some corticosteroids as a trial, and they actually worked pretty well; eventually, things started looking up. After a few months, the pain just vanished...

Since then, I've been seeing Dr. Sentić every six months for checkups. I was just there in August, and they did more bloodwork for all sorts of things, and everything came back totally fine (thank god).

But, there's always a "but." I'm five months pregnant now, and about a week ago, the joint pain started creeping back in, mostly in my hands. My fingers feel almost completely stiff in the mornings.
I don't really know what to do. I feel stupid calling the doctor again since my labs were perfect just last month, so I guess maybe something is brewing in my system, though you'd think it would show up on the tests by now...

I'm kind of panicking here... it's not nearly as intense as when I first got sick, but still... I'm worried.

I don't know if this is just normal because of all the body changes during pregnancy, or if everything is about to get complicated again...

Has anyone else dealt with this? Any experiences?

Thanks in advance for any help....😘

Amy Jones20 said:I’m honestly stuck on what to do next. I feel kind of silly calling my doctor again since my labs were perfectly fine just last month, so I can't help but think something might be brewing in my system—but surely that would have shown up on the tests already...

It’s not silly at all, give them a call!
It really depends on which specific tests you had done; it's totally possible for something to be "brewing" without showing up on those results yet.

My own experiences have been great (knock on wood!), but please keep in mind that everyone's body reacts differently, so my results don't guarantee yours will be the same.

For example, my autoimmune issues flared up for the first time during my pregnancy, and they haven't let up since. Pregnancy was clearly the trigger for me, even though I know some women actually see their symptoms improve while they're expecting.
If I were you, I’d definitely go see a doctor.

Amy Jones20 said:Hey everyone 🙂 ,

I’ll try to make this quick, though honestly, it's kind of a lot. So, basically... back in 2003, I had this massive "episode" where my joints just completely locked up on me. My hands were the worst—wrists, fingers, everything—and then my ankles started acting up too. Even the simplest little things felt impossible, like trying to turn a key in a lock, which was a total nightmare 😁 .

They ran every single test under the sun for autoimmune stuff, from MS to Lupus, before they finally landed on a "suspected" diagnosis of sarcoidosis. It wasn't even a definitive thing because the results weren't even positive, they were just sitting right at the upper limit of normal...

I was put on a trial of corticosteroids, and thank god, I responded really well to them, and over time things actually started looking up. After a few months, the pain just vanished...

Since then, I've been going in every six months for checkups with Dr. Sentić. My last one was just this past August, and they pulled my blood for all sorts of things, and thankfully everything came back totally fine.

But, there's always a "but," right? I'm five months pregnant now, and about a week ago, these joint pains started creeping back in—mostly in my hands. In the mornings, my fingers feel almost completely stiff.
Now I'm stuck wondering what to do. I feel so stupid calling the doctor again when my labs were perfectly fine just a month ago, so I keep thinking maybe something was brewing in my system that should have shown up on those tests by now...

Honestly, I'm panicking a little... it's not nearly as intense as when I first got sick, but still... I'm not exactly thrilled about this.

I don't know if this is just a normal part of pregnancy and my body changing, or if everything is about to go sideways on me again...

Has anyone else gone through anything like this?

Thanks in advance for any help....😘

I deal with an autoimmune condition myself and am actually getting ready to conceive, but I know I need constant monitoring. Seriously, just call your doctor and explain what's happening. She won't think it's weird at all; if anything, she'll expect it...👍 :top

A friend of mine dealt with similar symptoms, and things actually took a turn for the worse once she was pregnant—she’s got rheumatoid arthritis, if I recall correctly... though honestly, don't take my word for it, I'm hardly a doctor.

Honestly, don't even overthink this... you should definitely reach out to your doctor right away.
Autoimmune issues can be such a struggle, and yeah, I guess they really do have a tendency to either flare up or settle down during pregnancy...

I actually deal with an autoimmune condition myself!!

So please, just give your physician a call.😘

Bringing this old thread back to life—anyone else dealing with autoimmune flare-ups after pregnancy? For me, my hypothyroidism and diabetes were actually totally chill during my pregnancy, but now? Managing the blood sugar is a whole different beast, even though it’s been almost five years since

Ashley Cooper52 said:I'm digging up this old thread because I was wondering if anyone else here has dealt with their autoimmune issues acting up after pregnancy. For me, my hypothyroidism and diabetes actually stayed totally chill during the whole pregnancy, but ever since I had my little one—which was almost five years ago now—trying to get my blood sugar back under control has been such an uphill battle.

If you want the long and short of it, it basically works like this:

While you're pregnant, your immune system kind of goes into a sort of suppressed mode (to put it simply, it just doesn't react as aggressively).
Think of it as a bit of an evolutionary tweak to how our bodies work; since a mother is carrying a baby that’s part her and part the other parent, her immune system has to dial things down. If it didn't essentially "calm down," the body might actually treat the fetus like some kind of foreign invader—sort of like a virus or a bacterium—and try to reject it, which obviously wouldn't end well for the pregnancy.

That specific mechanism is why people often see their various autoimmune symptoms seemingly vanish or settle way down while they're pregnant.
But once the pregnancy is over and everything returns to normal, the immune system basically hits the reset button, going right back to its original factory settings and reacting exactly the way it did before the whole thing started.

Could hormones actually help calm things down?

My doctor told me straight up: don't even think about taking birth control pills with estrogen. Apparently, they make the condition worse. I did some digging into lupus and estrogen, and there are studies showing that for a certain group of women, spiking those estrogen levels can trigger a flare-up.

It just makes sense to me, though. Like, why does everything seem to settle during pregnancy? It’s because estrogen levels drop while progesterone climbs, which seems to stabilize the disease. Then, once you give birth and those estrogen levels skyrocket again, the symptoms come roaring back.

It’s pretty undeniable that hormones play an absolutely massive role in how any human being’s immune response functions.

The whole way we talk about different "systems" in the body is really just a teaching tool—it's basically just a way to make the subject matter easier to digest in a classroom setting.

In reality, you can't even begin to wrap your head around the immune system without looking at it alongside the endocrine, hematopoietic, and other systems...

Just a little warm-up question for everyone.

Take the thyroid, for instance (it pumps out certain hormones and responds to others).
Thyroiditis (inflammation of the thyroid).
Is it usually an autoimmune thing?
Are there things like anti-TPO antibodies?
Of course there are.

And here's another thought.

If our immune response relied strictly on hormone levels—like, just the interplay between them—then doctors would have figured out how to treat all autoimmune diseases with nothing but hormone therapy a long time ago, wouldn't they?

So, a quick side note—corticosteroids are used to treat a huge variety of autoimmune conditions.
And that part is true.
But tell me, which chronic autoimmune disease has actually been "cured" by corticosteroids? 🤔

The immune system is this brilliantly designed "machine" or "program" (though, obviously, a genius idea doesn't always execute perfectly in the real world), and it's incredibly finely tuned. But much like a high-end violin or a grand piano, it sometimes needs a bit of "tuning" after playing enough notes.

And the truth is, we (the scientists and doctors) aren't quite skilled enough "piano tuners" yet to know how to get such a complex instrument back to perfection once it goes out of tune.