Moms with chronic illness

kaylaef · January 2019

Hey! Third time mother from Ontario Canada here. I have a soon to be 2 yr old and a 3 yr old. Wondering if any other moms have a chronic illness? I was diagnosed with MS at 18. Maybe we can support one another?

agpandme · January 2019

I'm so grateful for this thread. I was diagnosed in 2013 with Ulcerative Colitis. It is my biggest worry while being pregnant.

suzycupcake · January 2019

I also have MS, but I am in a remission right now. What kind do you have @kaylaef ?

telda715 · January 2019

Hi ladies! I have Crohn’s Disease, diagnoses when I was 10, so 25 years ago. (Wow that makes me feel so old!!!)

This is my second pregnancy, last was 2008. Thankfully then, and so far now, my Crohn’s chills out while pregnant. I don’t know if it’s the increased blood flow, hormones, or slower digestive track - but if I could be pregnant nonstop I would. (I had to do IVF because of all the scar tissue around my ovaries from my Crohn’s related surgeries.)

The downside for me, after I had my daughter I got sick again. Praying to catch it before it gets bad this time. Also, I’m taking a biologic that scares me. I’ve done tons of research that all is in the fence. I may not breastfeed depending on what the OB and GI say.

And... exhaustion is a ton worse being pregnant. I’m sure you all can relate! Our bodies are just doing so much right now between chronic illiness and growing a baby!

Beauxbaton · January 2019

Do autoimmune disorder count?

This is my 4th pregnancy but my first after being diagnosed with Sjogrens. I have to consult with a MFM doctor and I've never had to before. I'm nervous. I've done some reading, and while complications aren't common it can cause a heart blockage in the fetus, I think specifically with the antibody I have. But the other tests they run looked good. So hopefully everything will be ok. My OB wanted me to stop taking the medication I take to keep it in check and I can already feel the joint pain coming back. My doctor's nurse said they'd do a sonogram of baby's heart at 24 weeks and then start close monitoring at 28 weeks. I don't know what that entails. I had pretty close monitoring in all of my other pregnancies because of my thyroid. So I'm wondering how this will different.

kaylaef · January 2019

I have relapsing remitting! My ms also go into a kind if remission pregnant. But I still super struggle with fatigue. @suzycupcake

kaylaef · January 2019

Of course it counts! @Beauxbaton what's an MFM doctor?

kaylaef · January 2019

My doctor took me off work early with my last pregnancy. The fatigue go to be way too much. I also relapsed a bit after labour. Did any of you?

kaylaef · January 2019

@telda715 for ms I actually found breastfeeding helped keep my symptoms at bay. But if it means getting you back on meds to prevent getting sick, I would totally give it up. You're no good to your child of you're unwell.

suzycupcake · January 2019

@kaylaef I’m a FTM. I also have RRMS and been in remission since end of 2016. It was explained to me that the fatigue I experience now is from being pregnant. I don’t experience the MS fatigue unless I’m in relapse or if I get too hot. So far, pregnancy fatigue has been manageable since I’m used to a much more debilitating kind.

Haha with the frequent urination and cognitive challenges of pregnancy, Id think I was having a relapse if I didn’t know I was pregnant.

As far as relapse after labor, that is a concern for me too. There is a lot of research done about exclusive breastfeeding showing that it drastically reduces relapse rate after childbirth in that window.

telda715 · January 2019

Our bodies are amazing, even if we have crohnic illnesses. Haha So glad you ladies notice symptoms subsiding/remission when pregnant, too!

@kaylaef Completely agree! Especially after having my first - just isn’t worth the risk to either of us. Meds are found in breast milk. I’ll have to stop them before delivery, so I am planning to breastfeed for a couple weeks, then wean unless doctors tell me otherwise and can back it up with research.

Beauxbaton · January 2019

@kaylaef it's a high risk doctor I think.

agpandme · January 2019

My sister has had 3 kids. With the first one she got eczema, then when she was pregnant with #2 it went away. Now after having her 3rd she has eczema again. She encouraged me to get pregnant to see if it would change my issues. I switched to a new medication this summer and have been feeling amazing so I'm not sure if I will see a huge change.

deecherise · January 2019

I don't personally suffer from an autoimmune illness yet, but they run strongly in my family, and I figure it's just a matter of time for me (MS, Hashimoto's, RA, and sarcoidosis are all in 1st degree relatives).

I can offer a scientific explanation for remission during pregnancy however--it's because your body is under massive immune suppression. AIs are as you all very well know the result of inappropriate immune targeting of "self":a specific tissue (nerves in MS, digestive lining in ulcerative colitis) or even just a certain protein (gluten in Celiac's). Because your body is working to tolerate all of the foreign proteins produced by your fetus, it's essentially distracted. This immune suppression is also partially why everyone freaks out about pregnant women and various bacteria like Listeria...Listeria is something that poses no threat to us when we're fully immunocompetent.

sourlemon · January 2019

I don't have an autoimmune illness but I have a life threatening heart condition that I am medicated for. Sadly, it gets worse during pregnancy and the year after so I'll be more restricted and vigilant than ever. Even though this is my 3rd pregnancy, I was diagnosed with this issue after my second kid was born. So it's all kinda new to me.

suzycupcake · January 2019

@deecherise I’m not sure that MS can be define as an autoimmune disease yet, at least not in the classical sense https://www.nationalmssociety.org/What-is-MS/Definition-of-MS/Immune-mediated-disease

It is interesting though...I wonder if that’s why the drugs offered have such a low efficacy rate. It’s one of the reasons I refused them. Also though, I can’t understand why we’d want to turn off the one thing that is needed to fight any disease; the immune system.

Beauxbaton · January 2019

@suzycupcake most drugs for AIs don't turn the immune system off, it attempts to surpress it enough to stop being overactive and attacking itself.

suzycupcake · January 2019

Of course I know they don’t turn off the immune system completely @Beauxbaton but only used to treat MS specifically do suppress it enough to render it useless and from what I’ve researched, MS cannot be defined as an autoimmune disease yet because in autoimmune disease, immune system attacks itself. In MS, it attacks the central nervous system, specifically the myelin sheath in my brain. It’s a neurological disease.

suzycupcake · January 2019

Those same drugs have a 30% chance of working. Obvi something is being missed.

deecherise · January 2019

@suzycupcake immunologists (partially what I'm training to be) define MS as an autoimmune disease. To us autoimmune disease is not just "the immune system attacks itself" (if that were the case, only lupus and lymphomas would qualify). Our definition is much broader in that we view any immune break in tolerance (the act of your immune system leaving things alone) as an autoimmune disease/disorder. So by our definition, MS is an autoimmune disease. One of our faculty members actually uses mice with the mouse equivalent of MS to study how autoimmune disease is passed on--did you know that women are much more susceptible to AIs than men?

Edit: I read the link you posted and I respectfully disagree. Just because an antigenic basis for MS pathophysiology hasn't been identified, doesn't mean it doesn't exist.

suzycupcake · January 2019

@deecherise Disagreeing with the National MS Society is like disagreeing with the ALS Association or the American Cancer Society. All leaders in research. Of course you are allowed to disagree with any of them and I don’t claim to be as educated as you or more than, but I will point out that just because an antigenic basis for MS pathophysiology hasn’t been found, doesn’t mean you can just define it as a disease as such.

So for now, I will keep defining my disease as a demyelinating disease like all of my MS specialists and MRI reports say.

It is the current hypothesis that it’s high levels of Estradiol that is causing a pregnant woman’s body to go into remission from MS. Several years ago, I was asked to be a part of the research by my local chapter and I declined because one of the requirements were that you cannot be TTC.

Anyway, I think now the data has shown that Estrogen treatment has helped MS patients avoid relapse. Not sure if they were able to find a correlation for during pregnancy.

Edit because paragraphs were non existent.

Beauxbaton · January 2019

@deecherise me and my husband both have AIs so our kids are probably screwed. Lol

deecherise · January 2019

@suzycupcake that's fair. Scientists disagree all of the time on hypotheses, regardless of their institution. Rising levels of estradiol make immunologic sense--sex hormones in general have a skewing effect on cell-mediated immune responses. I now have some fun questions for my faculty, so thank you for the information.

@Beauxbaton, not necessarily! AIs can be inherited from germ line mutations, but they can also be due to environmental factors, like infections. For instance, the most recent research shows that one potential cause of Celiac disease is an infection with a common enterovirus during childhood. This virus performs something called molecular mimicry--it produces proteins that look similar to proteins produced by the human body. Due to the molecular mimicry, a break in immune tolerance occurs, and Celiac disease develops in the individual.

suzycupcake · January 2019

@deecherise And I hope you continue on this path. The world needs more specialists in that field, especially ones who will listen to a patients and investigate. I'm sure you know how freaking long it can take to diagnose a lot of this shit. Most of us get told that we are crazy or it's all in our head for years.

@Beauxbaton Al contraire, if your child does end up with an autoimmune disease (and I hope that he/she doesn't), he/she will fair better having a family that not only loves and protects, but understands what it's like. There's nothing better than being able to commiserate with someone who gets it.

Beauxbaton · January 2019

@suzycupcake this is true. And I'm probably over sensitive to noticing small things. I actually had my husband pegged for Hashimotos years before he was diagnosed. And he is new to the hypothyroidism stuff and I can usually tell his levels are off before he can. Hopefully if anything is ever off with my kiddos I can detect it before it's a huge problem.

kaylaef · January 2019

I am loving the constructive conversation here.
@suzycupcake I am also not medicated for my MS . Neither is my mother. Who is now 62, and still mobile might I add.
@Beauxbaton I find such comfort in the fact that my mother also has Ms. It provides me with a support system many others dont have.
@telda715 formula is incredible. I would risk your well being without very definitive research that's for sure.

kaylaef · April 2019

Hey ladies! Jusy checking in! We should all be just over half way here! How are we doing. How are our symptoms? Ive been in relapse the whole pregnancy and seeing my neurologist with my OB. I have come to terms with the fact that i may not be able to nurse my third boy, if steroids are needed. Healthy mom formula fed baby is certainly better then a sick mom and a breast fed baby. Have my next set of MRIS book for thr end of August to see if there as been progression. Happy for the level of care im receiving from both my specialists!!

Beauxbaton · April 2019

@kaylaef I've been in a Sjögrens flare for a while. but feel like I'm coming out of it. I've read so many stories of people going into remission or being symptom free during pregnancy. Makes me jealous

Anyway, mostly ok. Thyroid is looking good. Sjogrens flares seems to be calming down. Ultrasounds every week. Baby's heart is looking good still. I think I have 4 more ultrasounds before they so a more in depth scan of baby's heart, and then after that I start with weekly biophysicals on top of the heart scans, but it's still just one weekly ultrasound. I will say I've noticed a rise in the amount of anxiety I have and that's nice fun.

agpandme · April 2019

I'm not on any immunosuppresents or biologicals, thankfully. I refused to take them. Instead they started me on an anti inflammatory and it seems to be working as well as I hoped. I have been having a bit of trouble lately but I'm not sure if its due to the pregnancy or not. I generally get ill when the seasons change (fall most often but sometimes spring) so its not surprising I'm a little off. I am very concerned with giving birth in August and then potentially getting very ill in the fall. My body seems to get ill after it has been run into the ground all season and then crashes when the weather changes. We will see what happens and I will definitely do my best to take it easy.

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