Lupus?

laxdixdar · July 2015

Anyone have experience while pregnant?

Long story short.... 3 weeks before I found out I was expecting I ended up in the hospital with severe joint pain all over my body. I tested positive for the flu and although I had no other symptoms they attributed it to that. When I say joint pain I could not ove without nearly blacking out. Since I was released from the hospital I've had pretty bad reynauds that has progressed from my hands, to feet, to even Lips now.

K Fast forward. My labs came back 6wks ago, but my specialist pretended like they were nothing until yesterday where suddenly she was concerned if I was on aspirin. Which I am (thankfully my ob put me on it as a precaution after my last loss.)

I guess I just wondered if anyone had experience. How was your pregnancy? Did you have ongoing joint pain? How was conceiving after your diagnosis?

Thanks in advance, I've Googled... I just wanted some first life advice.

karynste19 · July 2015

I have lupus as well. It sounds as though your flare up was pretty severe. I haven't experienced pain like that. I was diagnosed around 8 years ago. I haven't had any complications since I've gotten pregnant although it is something I have worried about.

Obviously I wouldn't change your care without consulting your dr but my dr said there is very minimal help that aspirin provides when taken daily. Esp when looking at the negative consequences. I'm also pretty sure you should stay away from any aspirin products while pregnant. I would review with your dr that you should be on aspirin during your pregnancy and understand why. I have a much higher tendency to clot (tied to lupus) and they have strongly suggested that I don't take it during pregnancy or after. Your medical situation might be different from mine and they could say it's essential but I was really surprised to read the aspirin piece in your post.

Like you I have raynaud's. Although that diagnosis is really not an issue.

ChrissyD1203 · July 2015

I'm sorry I don't have anything to add--- I have raynauds, every doctor I have met has thought I've had lupus but I was tested and it came back negative, everyone in my family has several autoimmune disorders. I was so fortunate that I didn't having any trouble conceiving (unplanned), but I was told between my autoimmune, PCOS and endometriosis it would be difficult (which is why I wasn't so good about sticking with birth control). I have not had any complications so far which I am beyond words appreciative of. Having the flu sucks (I had the stomach flu in February). I hope you feel better so soon! Get some rest and relax xoxo

skfg · July 2015

I am sorry to hear you are dealing w/a flare on top of being pregnant. I have polyarthritis - in short docs not sure if I am more lupus or RA symptomatic. I have displays of both. I've been fortunate that pregnancy tends to mitigate my symptoms. I was told I have higher likelihood of miscarriage bc of autoimmune stuff along with a higher likelihood of clotting. I am on baby aspirin. This is my 2nd pregnancy and I remember with this and the last I had a joint pain flare a few weeks before I found out I was pregnant. I also had a flare when I weaned DS from b'feeding. I hope you feel better soon!

ChrissyD1203 · July 2015

If there is a higher risk of clotting with autoimmune, does anyone know if that will show if I get the thrombophilia work up?

laxdixdar · July 2015

I feel fine now. The reynauds is pretty annoying, but doesn't effect me that bad. I'm just concerned about joint pain as I move along. Since that flare and since this pregnancy I only have minimal joint pain. Elbow for a week, knee for a week.... but nothing like the flare. I'm just a worry wart. I also have Hashimotos and I know it's not uncommon for autoimmune disorders to group, but the lupus is new to me.

@karynste19 My high risk doctor made it sound like she thought the aspirin is what made the success of this pregnancy versus my loss in Jan. I guess I will learn more as we progress, but they definitely both want me on it. (Her and my main ob)

skfg · July 2015

@ChrissyD1203 - I know certain autoimmune conditions do have risk factors for clots and I am by no means an expert. As far as tests, the one I know of is the lupus anticoagulant. My hematologist tested for it after I had minor surgery and clotted when there was only a 10% chance. I don't think I would have been tested otherwise. It took about 6 months of testing to suss out that I did not have the clotting gene (due to some other things going on). I will say it was an intense and charged process for me.

@laxdixdar - do you take a fish oil supplement? I find that helps alleviate the intensity of my joint pain. I also get acupuncture regularly and that works better than meds. Only drawback is that it is pricey.

anniyas · July 2015

I don't have a definitive diagnosis of anything beyond fibromyalgia as of yet (but lupus runs in my family as does Reynaud's), but it is definitely frustrating that there is not a lot of information about dealing with these issues while pregnant. My first pregnancy, I was in remission until 4 months post-partum. This pregnancy, I cry when I have to stand. Everything hurts... all the time. My sciatica is also already through the roof with this one. I am on an anti-inflammatory diet with limits to gluten, lactose, and nightshade vegetables. It seems to help most days. I don't have any real advice to share beyond this. On a flare day, rest easy and know you're not alone.

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