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KateKat

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 #1 

Hello everyone! I'm new here and this seems like the proper place for this type of post.

I am a 25 year old PhD student who was recently diagnosed with Lupus and Rheumatoid Arthritis. My mom has an autoimmune disease (Graves) and so did my grandpa (RA) but both of them developed their illnesses later in life. I've never been one to be patient so my disease decided to show up early [smile]. (I am also the first one to get Lupus so we're in new territory here.) 

Anyway, my partner and I married last summer so questions around babies have predictably popped up. Even before I got sick, I was adamant that I would not even consider pregnancy until my dissertation stage (another 2 years- in the mean time I am on Nexplanon both for birth control and for ovarian cysts). I am semi-ambivalent about kids but my partner is very kid-centered. We would like to have (or adopt!) one but now this illness has seemed to throw a wrench in everything. 

I'm not exactly sure what I'm looking for but I'd love to hear about how Lupus affected your pregnancy and if there are things we should do/consider as we get closer to seriously considering children. 

For what it's worth, my partner is 100% about putting my health first. He has been incredible through all of this and does not want me to attempt to go through pregnancy if it's going to put me at risk. We both come from (extended) families who fostered/adopted and that is a very realistic option for us. (But we also know how hard it can be to foster/adopt...) 

DeBartolo

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 #2 
given your age & education, my best advice would be for you to seriously look into UVA1 photherapy as a non-drug treatment option for your lupus....get that under control, then order that baby [smile]

Editorial — Light therapy (with UVA-1) for SLE patients: Is it a good or bad idea?

http://rheumatology.oxfordjournals.org/content/45/6/653.full

as Donald E. Thomas Jr. MD wrote in his 2014 book, The Lupus Encyclopedia: A Comprehensive Guide for Patients & Families,
“Amazingly, every study using UVA1 phototherapy on lupus patients has shown beneficial results.” [thumb]



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KateKat

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 #3 
Wonderful- thank you for the advice and link! I've never heard of that option (but I am very new to this!) 
meg

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 #4 
Hi Kate and welcome.  

In a way you're ahead of the game by having the diagnosis at a young age.  I had symptoms for 25 years before I got a diagnosis last June.  I have a complicated pregnancy history but in addition to lupus, I had antiphospholipid syndome (APS), which is blood clotting disorder that can accompany lupus.  In my case, the specialist I saw at the time felt that was the problem.  Do you know if they tested you for that?  Ideally your rheumatologist should be able to answer basic questions about it and possibly refer you to a high-risk OB at the point you want to start a family.  

I'm glad you have such a supportive partner. My husband is amazing and has always been there for me.

I can only share what I experienced.  They do have experts here at the LFA who may be able to answer questions and even refer you to a specialist. There is also a very helpful video posted here http://www.lupus.org/research-news/entry/pregnancy-lupus-updates-from-the-2015-ACR-annual-meeting  that I think can be helpful.

Take care!

Mary


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DeBartolo

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 #5 
you're welcome, but it's not an option that's being recognized or made readily available to lupus patients....indeed, you'll have to have your partner build the equipment you'll need & can use at home Smiley

seriously.

the places that have the clinical grade equipment are derm clinics in research hospitals 'cause it has proven very effective in treating several autoimmune skin disorders :

Efficacy of UVA1 phototherapy in 230 patients with various skin diseases.

RESULTS:

Good therapeutic effects of UVA1 therapy were shown in patients with atopic eczema, scleroderma, lichen sclerosus et atrophicus, keratosis lichenoides chronica, prurigo nodularis and with cutaneous T-cell lymphoma. Positive effects in some patients were seen in the urticaria pigmentosa and granuloma annulare group, no change to slight improvement was seen in most of the patients with rare, sclerosing skin diseases and no effect was seen in the chronic urticaria group.

CONCLUSION:
Besides topical and systemic therapy, UVA1 radiation is a good option of treatment in various skin diseases. It is one of the first-line treatments for several sclerotic diseases and it often improves pruritus considerably.

http://www.ncbi.nlm.nih.gov/pubmed/18201353


but, not many want to admit it is also great for our systemic autoimmune disorder

why?

call it money & politics  [nono]

[bernie sanders did not support this message, though he would if you asked him]


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KateKat

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 #6 
Hi Mary! 

Thank you for the welcome [smile] 

I'm not sure if I've had any testing around blood clotting. I feel like they've run every test possible on my blood (but, of course, every time I think that I get another order for 20 tests lol). I have a follow-up with my Rheum in about 4 weeks and I'm making a list of things I need to ask him so I'll go ahead and add that to my list! 

After getting my diagnosis, my Rheum tried to talk about pregnancy and whatnot with me but I just couldn't process everything at once and wanted to wait until I could bring my partner with me. (The appointment was very last minute- I lucked out when someone else canceled- so he couldn't get off work to go with me.) So that's something we'll at least bring up at the follow-up appointment. 

Thank you so much for the link- I will check it out. 
steffaneykthomas

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 #7 
Hi!

I'm new to lupus as well but here's what I learned through my journey of pregnancy. I was diagnosed last July (34 weeks pregnant) and showing symptoms only a month before I got pregnant (so not too long compared to other peoples stories... Im thankful for a quick diagnosis!) I was INCREDIBLY sick and very stubborn to go into the doctor (whoops!.. I typically don't like such aggressive treatment that hospitals provide... the irony in that is I'm a nurse at a hospital haha).

Anyway, what my doctors have told me is that it is best to get pregnant when you've experienced 6 months of remission, but ideally a year of remission. If you're successful in doing that then your chance of staying at the same level of health as your remission is 33%, the chance of going into a flare is 33% and your chance of actually experiencing an increase in your health is 33%! Taking those odds you have a 66% chance of a great pregnancy.... but I don't know we're so good at "odds" because what was it... a 2% chance of getting lupus. :) 

I hope that helps a bit! I haven't ventured into my second pregnancy yet... my peanut is only 7.5 months old. But even though it was an incredibly difficult pregnancy and being a mom is extra exhausting with the fatigue... we are DEFINITELy talking about another! They are just so much joy!! (We are also looking into adoption and are currently certified foster care parents.) I'm thankful there are so many ways to grow a family. 

Good luck to your potentially growing family! :) 

meg

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 #8 
That is awesome Steffaney!  Great advice and good luck with number 2!
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KateKat

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 #9 
Thanks for your story, Stephanie! And congratulations on your baby :) 

CBK

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 #10 
I'm glad this post is here. I have a similar situation. Recently diagnosed with Lupus so far nothing else. My husband of almost 2 years was planning (prior to being diagnosed ) was going to wait until he finished his schooling (another year and a half to 2 years ) but now with the diagnosis and the fear of things getting worst we want to have our babies now. Whereas I am ready to pop out a baby and deal with whatever complication God may throw our way. He kindly wants to wait until we have a handle of knowing the symptoms and having an action plan or coping system.

So our plan is to wait to see how the medication effect my body. Which is gives me time to research and OBGYN that specializes with Lupus mothers. Hope my story helps.
fuschia

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 #11 
Hi KateKat,

I'm a 21 year old female diagnosed with CNS Lupus in the same situation as yourself. I have a supporting husband and we've gone through the same topic about having kids. It has sort of made the decision factors more complicated. We had a chat with my doctors and while they kept saying that getting pregnant with Lupus is not a big problem but he was firm about having my symptoms treated first. He also went on to say that some hospitals need to be equipped and capable to handle pregnancies of patients with Lupus.

I'm in the same undecided boat as you are. I always thought I'd be a mother when I'm 25 so that I could enjoy a bit of life with my husband for a few years but ever since last december when i experienced my first set of symptoms, I've been questioning myself whether I should have a baby or not. I just don't want to be too late and with a health situation that is unable to cope with the demands of being a mother. I guess I need some time clearing my head and making a decision while I follow my doctor's advice to first treat the symptoms and then plan.

My best wishes to you and positive energies from Germany.

Thank you Steffaney for sharing! Congrats on your first and best wishes for your second! :)
Bbryant

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 #12 
Hello ladies. I'm new here but this is an issue close to my heart. I'm 32 and currently 34 weeks pregnant with my 2nd. For practicality's sake my pregnancy has been pretty uneventful!! I've had several flares (currently having one) but I think that it's because this was not a planned pregnancy and I wasn't able to get my lupus under control before conception. Had I been in remission or at least been under less stress (I'm in grad school ), my experience would have been different. All in all the baby is totally fine, I'm not on meds other than occasional pain medication and I've been able to treat the inflammation with alternative strategies. I would say to plan your pregnancy and try to be in remission for a while before you conceive. Otherwise expect some challenges, but nothing life threatening. Good luck!!
meg

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 #13 
Hi Bbryant and welcome!  And congratulations!  I wish you the best of luck during the rest of your pregnancy and with the little one.  Please let us know how everything goes - when you have time of course in between taking care of 2 kiddies.

Mary



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Cakelady

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 #14 
Hi Kate and welcome. My sister has lupus and had 3 pregnancies go fine. My first one was fine my second one was h e l l but you are petty far along so just rest and keep positive thoughts. Also you might flare right after you deliver. Just make sure everyone knows you have lupus.

Also in the women's sections I believe there is a video regarding pregnancy. You might just want to check it out

Good luck.

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hikergirl

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 #15 
Hi Kate, thanks for introducing this topic! I am 34 and diagnosed with Lupus this year. My husband and I have thought a lot about having children but my recent diagnosis makes me very nervous. I would like other's feedback about maintaining energy level during pregnancy and as a parent. I have a lot of fear around fatigue and my ability to parent effectively. What are other's experiences?
Thanks.
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