Behcets

[Rachel604]

I'm 24 currently at university study marine biology , biodiversity and conservation.

I have a year left at uni and would like to start a family after I finish

If anyone could give me some advice about their pregnancy , I would be greatful

I'm currently on

400mg hydroxychloquine

4300mg Paracetamol/dihydrocodeine

3,200unita fultium D3

900mg gabapentin

20mg amitriptyline

[jzeis]

Hi Rachel604,

I've written a couple of posts on BD and pregnancy for my EssentialBehcets.com blog. The first post is about my personal experiences going through two pregnancies, and the second post has the results of a survey I'd done of 65 American women with Behcet's who'd gone through pregnancy. You can see both posts here:

behcets.blogspot.com/search...

Hope that helps,

Joanne Z.

[Hidden]

Hi Rachel,

I am assuming you have Behcets yet your list of medications isn't typical for someone with Behcets ( no immunosupressants or colchicine etc ).

You are on a lot of analgesia. Have you talked to your Consultant about pregnancy as they are the ones best place to advise you about meds etc?

[Rachel604 in reply to Hidden]

Yeah i do have bechets, I'm allergic to colchicine , just come off Humira as it wasn't working .

I have not spoke to them about it yet , I will at my next appointment

[J2theO]

I found out I had BD at the age of 28 years. I became pregnant at the age of 30 years old. At the time I was taking a daily dose of imuran 200 mg and was able to have a healthy baby boy no issues what so ever and had a beautiful and wonderful natural delivery.

[Rachel604 in reply to J2theO]

That's wonderful , this is what I'm hoping for ☺

[Chris1096]

Hi there I'm very sorry but my name is chris I'm 41 years old with 2 children ages 18 & 20 year old girls I got diagnosed about 15 years ago with Behcets I've had lots of problems over the years I was also fitted with a superpubic catheter about 10 years ago I'm starting to see signs of both my daughters with symptoms of Behcets too but been told it's not Hereditary but I'm almost sure they have got it because they've been in hospital over the years with a lot of symptoms next time I'm at specialists I'll be discussing it with them,

I do hope you can get some advice off some of the lady sufferers on this site

Regards

Chris Ellis

[duke22 in reply to Chris1096]

i hope they dont have behcets. i am just a mother not a doctor but i think it is heridetary because my 24 year old has behcets terrible and he has the hla factors b51 and b57. both are behcets hla factors and his dad had one of them and i had the other. i dont know if it is bad luck of the draw. me and his dad do not have behcets but just carried the genes and passed them on. his biological brother that is also our biological son has neither hla factors. my kid though who is smart says he is not having kids (at this point he is too bad off) because he would not take the chance. i am sad about it but i have cried and continue to cry over this kid and i am greatful to have him but quality of his life sucks and has for so long so i can see what he means

[Rachel604 in reply to duke22]

I have the HLA B27 gene but I'm the only one in my family all the way to the early 1900s that's had behcets 😔Which is so confusing for the doctors .ive spoken with my other half about the options for us if there's a chance they can . I have no problem with surrogates or adoption ☺ asking as I can have a family

[duke22 in reply to Rachel604]

From my understanding b27 is fir ankalosing spondylitis. My other kid has that hla factor no symptoms. B27 son's dad has that hla factor and his brother (b27 kid'uncle) confirmed ankalosing spondylitis. now the uncle with ankolising spondylitis has 2 kids. Don't know there hla factors. They r about 20 years old. They don't have symptoms and one of those kids has a baby all looks good bit don't no their hla factors. I Am Sorry This Is Probably confusing. My kid that has b 51 and b 57 is confirmed behects and bad off also had cml leukemia so he us not taking chances with his genes being passed on

[nancyd]

Rachel604 Hi! My children where born before i was diagnosed. What type of specialists do you see? I am seeing a rhuematologist and I wonder if I should look elsewhere. He doesn't like to prescribe pain medicine. So I take colchicine, 900mg gabapentin.. once in a while tramadol. nancy d.

[Rachel604 in reply to nancyd]

Hello , I see a vasculitis specialist , rheumatologist , ophthalmologist and a behcets specialist nurse . Rachel T

[UKADMIN Partner Behcet's Syndrome Society]

This is the updated factsheet on BD and Pregnancy: behcets.org.uk/wp-content/u...

Best wishes.