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March 2016 Moms
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Any Momst to be dealing with RA or other auto-imune diseases?

rosieschmozierosieschmozie member
in March 2016 Moms
Hi all,

I was wondering if there where any women going through a pregnancy whilst having an auto-imune disease like I do, RA and Sjogrens syndrome. Every docter told me that my inflammation should be very low as most women go into remission when they're pregnant. Well... I'm not one of those women. I currently have such a bad swelling of my foot joints that I can't walk and I am very nervous because if it's active, it's only gonna get worse and I can't use the heavy meds like metothrexate, prednisone or biologicals.

So, if you're like me out there dealing with an auto-imune disease; share your stories!
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Re: Any Momst to be dealing with RA or other auto-imune diseases?

  • ACleanLife24ACleanLife24 member

    1) Your doctor lied... its 30% better, 30% worse, 30% the same

    2) I had a few of my meds changed... if you aren't on Plaquinel it is safe for pregnancy and may help but will take a few weeks to kick in.  I can't take my pain meds or Amitryptiline so pain at night and sleeping has been an issue.  My hips and middle back have been particularly bad but I have been trying to take things slow, use heat and ice (gel ice packs and hot water bottle) and not over do it on Tylenol since it doesn't really work that great (high dose naproxen is the minimum to take the edge off). 

    3) See if you can find a specialist... I am seen by a team of OB/Rheumy once a month.  They required extra blood work for antibody panels and will start weekly scans at 28w due to concerns with the placenta development as my auto-immune condition effects connective tissues.


    Have you tried getting into a pool? Getting some exercise may help with the clearing of swelling from the joint.  Also prednisone is totally OK to take if its the typical 7-10 day course... chronic use is more of what the are concerned with.


    FYI I have MCTD and currently my sicca, joint pain, fatigue and random rashes seem to be the issue... although I am nowhere near a full flare

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  • ldvisldvis member
    I have lupus but I am one of those lucky women (so far!) who is in remission during pregnancy. I feel the best I have in years as far as lupus symptoms are concerned! Epsom salt baths, swimming, avoid fatty foods/gluten. Stay on top of doc appointments, be very honest on symptoms and don't sugar coat. Prednisone is okay during pregnancy, methylprednisolone is not.
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  • FutureMrsCaesarFutureMrsCaesar member
    I'm so sorry you are feeling so awful. I have family members with both RA and Lupus, such awful diseases.  I have Grave's disease which was in remission for my last pregnancy but flares up badly around 2-3 months postpartum.  I was still treating that last flare up when I got pregnant with this baby 18 months later.  So far I have been able to avoid meds in the first trimester but my levels are falling so I'll likely have to go back on.  Best of luck to all of you.
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  • rosieschmozierosieschmozie member
    Thank you for your replies! I just moved to a different country so the medical stuff is all new to me. I am on Plaquenil and Salizoperine. I'm seeing an OB next Friday and will try to move my appointment with my reumatholigist up a bit (its now set for mid Oktober). I do keep quite active if my body lets me. I try to walk at least 45 min to 1 hour a day an I cicle regularly.

    I'll try the epsom salt baths. And for as far as pools go, I have not been in a while, but I might if they have a heated section because the cold water isn't very good for me.

    I hope everything will go well for you guys. Do you have any extra help or a plan for when baby arrives? Thanks again!
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  • rosiegirlie23rosiegirlie23 member
    I have psoriatic arthritis/spondyloarthritis. Definitely not better now that I'm pregnant! I was diagnosed shortly before finding out I was pregnant so I never started treatment. Not being able to take NSAIDs is killing me. Not comfortable taking Tylenol constantly so I'm trying to grin and bear it but really I'm in a lot of pain and I'm sure it will only get worse as the pregnancy progresses.
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  • cmerriburycmerribury member
    I'm headed in tomorrow to meet my new rheumatologist for the first time. About 8 years ago I was going through the process of being diagnosed with whatever was ailing me, but doctor after doctor kept leaving Hopkins and I got frustrated because I felt like I had to keep going to new doctors and starting over, so I gave up. 

    After my second loss in February my OB ran some test and my ANA titer came back positive and homogeneous. She referred me. I've been feeling OK so far this pregnancy, but I think something was wrong after my last miscarriage (I don't know if it was a flare or what, since I still don't know what I have) but I felt awful. I hope the new doctor tomorrow can help...
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  • ldvisldvis member
    cmerribury said:

    I'm headed in tomorrow to meet my new rheumatologist for the first time. About 8 years ago I was going through the process of being diagnosed with whatever was ailing me, but doctor after doctor kept leaving Hopkins and I got frustrated because I felt like I had to keep going to new doctors and starting over, so I gave up. 


    After my second loss in February my OB ran some test and my ANA titer came back positive and homogeneous. She referred me. I've been feeling OK so far this pregnancy, but I think something was wrong after my last miscarriage (I don't know if it was a flare or what, since I still don't know what I have) but I felt awful. I hope the new doctor tomorrow can help...
    Good luck! Getting diagnosed is tricky. Have you had antibody tests done? (Such as SSa, etc) Some of my antibodies can be harmful so I have close monitoring of the baby, and am on a blood thinner. I had miscarriages before I found out about my lupus. I'm hoping the best for this baby, and enjoying every minute. Even if I try not to get "too attached" the pain of loss will still be there, so I try to love while I can.

    Also vit d is really important, high levels can stop further progression of the disease. Most people have low vit d, and my rheumy recommended 6000 iu of vit d per day (most vitamins only have 400 iu of vit d).

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  • cmerriburycmerribury member
    edited September 2015
    Thanks, @ldvis. On the antibodies, not yet. I'm assuming he will run them (or at least order them) tomorrow. I'm taking 1,000 IU of Vit D a day per my OB, I was low, and she hasn't asked me to up it, so I assume it's ok? I feel like this isn't an ideal time to try to get a diagnosis since my body isn't exactly "itself" right now, but my OB didnt want to risk it with the ANA results. We shall see what the rheumy says.
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  • Jen&MACJen&MAC member
    My ROC said I needed 20,000 iu daily of vit D because of my deficiency and autoimmune diseases. Good luck, do your tests, and feel better... 1/3 of pregnant women go into remission because the body reprioritizes and releases its own form of immune suppressor.
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