Author Topic: Another new girl!  (Read 5372 times)

Kirby

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Another new girl!
« on: June 08, 2009, 11:50:35 AM »
I was actually told in 2000 that I had Sjogren's. it was blown off that it only caused dry eyes and mouth. THat Dr was more concerned with my Raynaud's. Anyway, I went to a new GP in Jan and told him some of the symptoms I had. He got all investigative (is that a word) and did blood work and sent me to a new Rheumatologist. 
OK, already knew, pos for SS-A and SS-B, astronomical rheum factor, highly pos ANA, neg Lupus stuff. You get me drift?  He puts me on Plaquenil. OH MY!!! THe first day......Where has this drug been?  It was such a drastic difference in all this pain and muscle cramps that I just thought was "normal". Not to mention, the GERD, fatigue, heat intolerance, sleep issues, chronic cough and of course dry eyes and dry mouth.  I also had a complicated pregnancy that I believe was complicated because of the Sjogren's. Which ended with severly premature twins and one passing away due to an infection/prematurity. So, if I would have known?  Treated the Sjogren's?  Who knows? 
Looking forward to seeing how all this fits together!
Kirby

Chickpea

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Re: Another new girl!
« Reply #1 on: June 08, 2009, 12:03:19 PM »
Welcome Kirby!

I'm so glad you've found us.  I can't say how sorry I am to hear that one of your babies died.  You must have been devastated, and it must be tempting to look back with all these questions and wonder 'what if'. 

It sounds as though you've got a good GP and rheumy now.  How wonderful that the Plaquenil is helping so much.  Some people find they have nausea and stomach issues while they adjust to it, and taking it with food especially yogurt can help.  It must seem like a miracle to you now you're finally being treated!

Visit often and tell us more of your story, ask all the questions you need to, and get to know your Sjoggie family.

Take care - Chickpea

TerriF

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Re: Another new girl!
« Reply #2 on: June 09, 2009, 10:10:12 AM »
Hi Kirby,

So sorry about the loss of you baby, I hope you don't mind but that has me wondering and I need to ask, I too lost 2 pregnancies before being diagnosed with Sjs, the first pregnancy I was 5 months pregnant and just found out we were to have another girl, than a little later I lost another at 4months into the pregnancy. The doctor's never knew why I lost them although with the first I did have a temp and they figured that something must've been wrong with the baby. I wondering though if Sjs does have something to do with this?  I guess I just searching for answers still.

Thank you and hpe you dont mind my intrusion on your post.

Fairy

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Re: Another new girl!
« Reply #3 on: June 09, 2009, 01:13:41 PM »
Welcome Kirby!
I am also sorry to hear about your baby. What a horrible thing to go through. You have all of our love and support here. I also had a premie baby. My son was born at 34 weeks and they did not know why. BTW, my son was fine. I was never able to have another one. My Rheumy says it probably was from SJS. I have always had vocal nodules and we did not know why until now. I also went into kidney failure at 15, again, never knew why. Evidently all of this is symptoms of SJS. I hope you check back in with us often. Great to have you!

Kirby

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Re: Another new girl!
« Reply #4 on: June 09, 2009, 04:07:59 PM »
Thanks all for the welcomes and sympathies.
I do not mind answering questions about my pregnancy and daughter. I like being able to talk about her actually!
My Pregnancy was very complicated. We used Clomid to get preg (never found out why i couldn't). I had preterm labor starting at 15 weeks. Multiple admissions to the hospital, a t-pump, Mag sulfate, bedrest.....  In my "doctor" (OK, I'm really a nurse)  opinion, since Sjogrens causes muscle soreness/irritability- I think it was a factor.
The complication that snuck up on us and delivered the babies was HELLP syndrome. Which is kinda like a bodies reaction to the placenta (auto-immune response...) Where blood pressure goes up, platelets drop and liver failure.
I have asked my rheumy if he thinks it was related, he was not positive that it was but of course not rule it all out. HELLP syndrome is so unpredictable from case to case.
So.....my babies were delivered at 28 weeks. Addison, my daughter lived for 18 days and died from an infection. Malakai (Malachi) is a precious 3 1/2yr old that is very excited that we are going to the zoo tomorrow!
I am on plaquenil now. My rheumy said if I get preg again we would have to weigh benefits/risks of contimuing the plaquenil. IFFFFFFFF, I ever got preg again, I would prob take the risk with the plaquenil (since the risk for it is "undetermined") to hopefully avoid these complications.
Shooo, that was "eye-full".
Thanks for listening.
Kirby

Scottietottie

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Re: Another new girl!
« Reply #5 on: June 09, 2009, 04:33:33 PM »
Hi Kirby  :)

Welcome to Sjogren's world. I'm sorry to hear you lost a child. I can only imagine how precious their twin must be to you. From what I've read in here the biggest risk to the baby of a 'sjoggie' mother is foetal heart block. (If I have that wrong - someone correct me please!)

SjS is so individual to each and every one of us though. The illness never seems to affect 2 people in quite the same way although there are obviously common factors.

I'm glad you're getting treatment. Too many docs seem to believe it's only dry mouth and dry eyes and this site really does suggest something a lot different!

Take care - Scottie  :)
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kimbo

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Re: Another new girl!
« Reply #6 on: June 09, 2009, 07:58:18 PM »
Hi Kirby

Sorry for the loss of your baby. 

I am thankful you have found us and feel free to share all your concerns and question.

This is a wonderful family of people who share their sjoggie journeys with much support and encouragements to one another.

So, welcome to you and make your self at home.  :)

blessings kimbo
Diagnosed March of 2007. SJS/ RA Positive at 80  International-SSA strongly positive at 811-SSB 273
ANA positive at 1:1280
Hashimoto's
Gabapentin, propanol, Celebrex, Synthroid, Cytomel, vitamin D, B complex, Omega 3 complex, and multi vitamins; At 62, I seem to be a low maintenance sjog

jonnell

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Re: Another new girl!
« Reply #7 on: June 10, 2009, 04:10:56 AM »
Hi Kirby,  So sorry to hear about the loss of your baby,  I also lost a full term baby boy, he was born stillborn, he would of been 15 in September, my heart still aches for him.  I have 3 other children 16, 14 and Jenna 4.  I wish you the best of luck, come visit me on facebook,  Jonnell Labas would like to be friends.   Hugs and Kissess  Jonnell and jenna

lynnmarie219

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Re: Another new girl!
« Reply #8 on: June 12, 2009, 06:29:26 PM »
Hi Kirby and welcome to Sjogrens World!

Thanks for introducing yourself and sharing your story with us here. Please visit as much as you are able to as you will find a lot of valuable information as well as a lot of support and some new friendships while visiting here!

I'm sorry for your loss of Addison...I cant even begin to imagine what you went through.

Give Malakai a great big hug...hope the zoo trip was enjoyed by all!  :)

Patze

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Re: Another new girl!
« Reply #9 on: June 12, 2009, 06:49:34 PM »
Hi Kirby,

Let me also welcome you to the family!  This is an amazing board with tons of topics and oodles of information to boot! 

Let me also extend my sympathies on the loss of your precious little one. 

Please come often, and I hope to chat with you soon.

Have fun at the zoo!

Take care -

Patze
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