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-   -   Scared...Was just diagnosed with Lupus (http://www.justmommies.com/forums/f379-autoimmune-diseases-and-disorders/1991345-scared-just-diagnosed-lupus.html)

Adrienne214 May 27th, 2010 04:49 AM

Scared...Was just diagnosed with Lupus
 
I'm 9 weeks pregnant and have just been diagnosed with Lupus. I have suspected I had an autoimmune disease for a couple years but have never even considered lupus. My MIL has it and she is really sick and so I thought "I'm not that sick, so I'm sure it's not lupus". I'm still in shock and kinda in denial. Now that I look closely I can see the butterfly rash on my face :(.

I'm really scared. I don't want to be like my MIL. She is on so many medications and is always in pain. I'm scared for this baby. I developed pre-e with DD and I'm afraid I will get it earlier with this pregnancy.

I'm hoping someone on here has lupus and leads a normal life.

Celena May 27th, 2010 12:01 PM

Re: Scared...Was just diagnosed with Lupus
 
:welcome: to Autoimmune diseases board!

I'm sorry that you're so afraid right now, but it is a blessing to finally have an answer!!! They can treat you safely during your pregnancy with a number of medications and from what it sounds like you may be in the very early onset of the disease. It's wonderful that you have been able to carry a baby to term and will more than likely have a similar pregnancy as your little girl, but now that they know you have lupus they can possibly prevent PE this time around.

I've done some research on lupus for personal reasons... so I'm not just blindly giving you hope.

:dothug:

Welcome here Adrienne

Adrienne214 May 27th, 2010 06:30 PM

Re: Scared...Was just diagnosed with Lupus
 
I feel hopefull about this pregnancy. What I'm really scared of is the future. Some things I've read say that lupus tends to stay mild if it starts mild but I don't know how true that is. I don't want to miss out on raising my children and spending time with my husband when we are older. I hope that talking with the rheumatologist will help me feel more hopefull but I'm afraid they will tell me the worst possible outcome since many doctors are afraid of lawsuits.

I'm waiting on the results of my C3 and C4 (I think is what its called) to determine whether my lupus is in an active or inactive state. My kidney blood work looked good but I have to do a 24 hour urine to make sure my kidneys are okay. I should know all these results by Monday I hope.

They weird thing is that I feel fine. I can say I've ever had a flare. There have been nights where I feel achy like I'm getting the flu and I wake up fine, but the pain is so minor I've never even brought it up to a doctor. I've been tired for a couple years but not to the point where I can't work or have a normal life. I just sleep more than most people. I feel fine but the doctors are telling me I'm sick, it just doesn't make sense.

AliP May 29th, 2010 03:41 PM

Re: Scared...Was just diagnosed with Lupus
 
Hey! You are so not alone. I have been having symptoms off and on for about 2 years, but nothing drastic. I went to the doctor 6 weeks ago and confirmed an autoimmune disease with bloodwork. They are highly suspecting lupus, but I won't find out for a couple of weeks. BUT the thing is I found out 2 weeks after the doc appointment that I was expecting. I'm now 8 weeks and still don't have any answers. I really do feel your pain! *hugs*

Adrienne214 June 9th, 2010 06:37 PM

Re: Scared...Was just diagnosed with Lupus
 
I had more blood work done and things look good. They aren't sure if it is lupus now. It looks like whatever autoimmune disease it is, it is inactive right now. My kidneys look good and I'm feeling a lot better than I was with my first pregnancy. I'm still supposed to see a perinatalogist and rheumatologist but it is taking forever to get an appointment for some reason.

Good luck to you Ali, I hope you get some good news soon :).

mmllhh June 14th, 2010 09:03 AM

Re: Scared...Was just diagnosed with Lupus
 
Hi Hon, HUGS. I too have lupus. I also work for a Rheumatologist, so i get to see the worst of the worst. Freaks my out everytime i see someone limping in. Having said that, I have had the total work up for Pregnancy related issues. I assume that you have had all the blood work to if they were able to diagnose you. Please feel comfort that you will be able to have a healthy pregnancy. From what my dr has said, it's a 30/30/30. Meaning, 30% of people with Lupus feel better during pregnancy, 30% feel the same, and 30% feel worse.
You will still be able to take some meds during pregnancy. they have been deemed "safe" as you run a risk with any drugs that you take during pregnancy. If you are currently on Plaquenil, most doctors actual prefer that you stay on it, as it can control flares. If you do have a flair, you can go on prednisone, there is some increased risk of cleft pallet if taken before week 14, however the risk is only1% higher than someone not on prednisone.
I hope that this helps you feel a bit better. and know that Lupus does not have to be as life altering as it was years ago. Medicine has come a long way.
PM me if you need to chat or want any more information. I'd be happy to share.

Celena June 22nd, 2010 07:19 PM

Re: Scared...Was just diagnosed with Lupus
 
Quote:

Originally Posted by Adrienne214 (Post 20478853)
I had more blood work done and things look good. They aren't sure if it is lupus now. It looks like whatever autoimmune disease it is, it is inactive right now. My kidneys look good and I'm feeling a lot better than I was with my first pregnancy. I'm still supposed to see a perinatalogist and rheumatologist but it is taking forever to get an appointment for some reason.

Good luck to you Ali, I hope you get some good news soon :).

That's GREAT NEWS Adrienne!!! Sometimes autoimmune disorders go into remission during pregnancy and sometimes they flare up, but you would have had some symptoms already. My perinatologist & rheum both said this with slight variation... glad you got a great update to share on your appt!


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