Anyone here have lupus?

jaymers99 · January 2011

I just got diagnosed this past week, and I thought I remembered someone talking about it back from the knot days. Anyways, if anyone has any experience with or knows anyone with lupus, I was wondering how it affected your/their pregnancy. I understand that it puts me into a high-risk category, but DH and I would really like to have kids some day. Any other insights are welcomed also as this whole thing is new for me. TIA.

Married2MrWright · January 2011

Oh Jamie, I am so sorry. But grateful you have a dx so you can begin to manage it. If I am not mistaken there's another bumpie on here who is TTC and has lupus. Hopefully she'll chime in...

Big Hugs!

kaesha · January 2011

Aw, Jamie, I'm sorry. You're thinking of Miniwheats. We talked about it over on the Nest last month.

mrspresley · January 2011

yes, MiniWheats does and was able to get PG (though I understand the risk is maintaining the PG)

FWIW my aunt was diagnosed with lupus over 30 years ago back when they hardly knew anything about it and was still able to successfully birth 2 kids. i have no idea if she had any losses along the way but i think with close monitoring and a good doctor you should be able to have kids. sorry you're having to deal w/this though

jaymers99 · January 2011

Thanks, ladies. Although it's not the greatest news, I am glad that I was diagnosed so that I can start managing it and understanding the risks before I start TTC.

MiniWheats, if you don't mind, I'd love to hear about your experiences some time...and sending you vibes for a healthy pregnancy!

MiniWheats · January 2011

Hey! Yes, it is me. First off, I am really sorry to hear you ere diagnosed with Lupus. It is a really hard disease to control as every person experiences and manifests symptoms in different ways. Also, there hasn't been a new drug approved by the FDA in over 40 years (although, they are making headway in California, thanks to Snoop Dogg....lol, his daughter has Lupus). This makes it hard to treat as one of the only real ways to control it are immune supressors which leave you open to get sick in many other ways. I would like to chat and hear more about your symptoms and how you were diagnosed etc.

As for the pregnancy, my doctor told me to prepare for numerous miscarriages. He said that your body attacks the sac much like your immune system attacks itself. It took me about 7 months to conceive after going off BC (pretty normal). I am now 12 weeks and am feeling pretty positive about it. I have not had any bleeding and the heartbeat is very strong. I am of course still worried but the longer it goes on the less I worry. As for how I have been feeling, I am shocked. Although I have had very bad MS and some bad cramping btw weeks 5-7, my Lupus symptoms have almost disappeared. My specialist thinks that the pregnancy has put me into a remission of sorts. He said this is common withautoimmune diseases but that it could go either way. Your symptoms could disappear or they can get way worse. I guess I am lucky. The Lupus symptons will reappear after the pregnancy though....

Let me know if you want to talk more. Its nice to talk to someone who is going through it I will send you my email if you do and we can chat.

xoxo

Lindsey

Married2MrWright · January 2011

MiniWheats:

I am now 12 weeks and am feeling pretty positive about it. I have not had any bleeding and the heartbeat is very strong. I am of course still worried but the longer it goes on the less I worry. As for how I have been feeling, I am shocked. Although I have had very bad MS and some bad cramping btw weeks 5-7, my Lupus symptoms have almost disappeared. My specialist thinks that the pregnancy has put me into a remission of sorts.

Wow Lindsey, this made me tear up. I am SO glad the pregnancy is going better than imagined...congrats!

MiniWheats · January 2011

Married2MrWright:
MiniWheats:

I am now 12 weeks and am feeling pretty positive about it. I have not had any bleeding and the heartbeat is very strong. I am of course still worried but the longer it goes on the less I worry. As for how I have been feeling, I am shocked. Although I have had very bad MS and some bad cramping btw weeks 5-7, my Lupus symptoms have almost disappeared. My specialist thinks that the pregnancy has put me into a remission of sorts.
Wow Lindsey, this made me tear up. I am SO glad the pregnancy is going better than imagined...congrats!

Isn't it incredible? Other than the puking...lol.... this is the best I've felt in 3 years. It's a double blessing

jaymers99 · January 2011

Hi Lindsey! Thank you for sharing. I'm so happy to hear that you and baby are doing well!

I'm still trying to get a handle on understanding lupus and how it affects my body -- it is so confusing because the symptoms are unclear and so different for everybody. At the beginning of the year, I thought I had a stomach virus, but now I think it was my first flare -- excruciating abdominal cramps, diarrhea, vomiting, fever, chills, extreme joint pain, a sore on the roof of my mouth, and fatigue. It was the sickest I have ever felt. After a couple days I was able to keep liquids down, but never got my appetite back. On top of that, the sore in my mouth made it difficult to eat. I ended up finally going to the doctor because I hadn't eaten in 2 weeks and thought that the lack of nutrition was why I still wasn't feeling better. When the doc saw my sore and heard about my joint pain, it tipped her off that there may be a rheumotological problem and decided to run tests. After a few days of running tests and getting IVs for my dehydration, she diagnosed me with lupus and sent me to a specialist for confirmation. He confirmed and ran additional tests (which I'm still waiting for the results). He started me on plaquinil and prednosone, and I already feel a million times better.

I found an online support group and have been trying to educate myself more on the disease. It would definitely be nice to chat with you more and get updates on how you and baby are doing. My email is jaymers99 [at] gmail.

lola808 · January 2011

Aw, Jamie, I'm sorry to hear about your diagnosis, but I wish you lots of good health and success when you are ready to TTC. Big hugs to you!

jaymers99 · January 2011

Thanks, everyone for your positive thoughts and for sharing stories about those you know with lupus. I feel uplifted just knowing that there are others with lupus who were able to have healthy pregnancies.

MH is really worried about the stress the pregnancy will put on my body and what it will do to me. I am more worried that I would be setting up baby for a life of health problems. With lupus, I read that in addition to an increased chance of being a preemie, baby has a chance of neonatal lupus or congenital heart disease that would cause him to need a pacemaker for life. That kind of scares me. Did anyone else have fears of what kind of health problems (not necessarily related to lupus) you might be passing on to baby?

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