Behcet's Disease, can I pass it to my unborn child?

[Kellsbryant]

I was diagnosed with Behcet's Disease in 2015, and recently found out that I'm pregnant. Being in the US, I haven't been able to find many physicians who are familiar with the disease. Does anyone here know if I have to worry about passing this to my unborn child?

[Stacey-]

Hello I have Bechets and a seven year old son. I am in Scotland. My experience was my medication had to change through pregnancy and after ceseriation delivery my son was monitored for a week. My specialist stated they would know if he had Bechets as he wouldnt feed as ulceration would be in throat. He arrived four weeks early at 5 pounds 11 ozs. Tiny but fed every hr 1 or 2 onces and soon gained weight. Today he is a healthy tall strong typical 7 year old boy with no Bechets symptoms. Thankfully!!! Good Luck with the pregnancy.

[Jacbar in reply to Stacey-]

Hi,

I am in Scotland and provisionally diagnosed with Behçet’s. My partner and myself want to have a baby but I’m scared what the medications would do to the unborn baby and what would happen to me if I stopped them to have the baby.

I have my rheumy follow up in 6 weeks and I will bring it up with him but I’m scared he will think I’m crazy for even wanting to have a baby when I’m so ill right now 😩

So glad to hear a positive story x

[Stacey- in reply to Jacbar]

Hi there I take Humira injections to control bechets but as it was a fairly new medicine 8 years ago no research had been done with regards to effects on an unborn child. With my specialist guidance i switched to prednisolone stetiods. I had regular growth scans and support from specialist all the way. He even came to the delivery room as my son arrived to weeks earlier than he was planned to get delivered. I had a really postive experience. As soon as he arrived I went straight back on my regular meds. I think if you discuss with hospital / specalist and once you are well enough they will support you Good Luck.

[Stacey- in reply to Stacey-]

steroids

[Kellsbryant in reply to Stacey-]

I didn't know that there was medication that could help with the Behcet's. Since diagnosis I've been on my own dealing with it, it's hard to even find a doctor who knows what it is. I've developed fibromyalgia due to the BD, and so far have been treated with Lyrica, and morphine, but they're not safe during pregnancy, so I'm in constant pain.

[Stacey- in reply to Kellsbryant]

I have fibromyagia aswell just diagnosed in Nov last year. Struggling to find a medicine that works and doesnt flare up my Bechets. I myself are in constant pain. I know how you feel. There is definately medication for Bechets just trial and error to find a combination that controls it. The only dr i have seen in the past 14 years that understands Bevhets is my eye specislist the rest of the drs i have seen. Only read about it in their medical journals when training. I hope you get some medication that helps you soon as you need all you energy to grow your little one.

[Legomum in reply to Kellsbryant]

Sounds like you need some good medical care as morphine should not be a treatment in a young woman. The good news is that the Behçet’s often improves in pregnancy. The risk period for a flare in mums is in the first couple of weeks after delivery. I was given iv steroids just after my babies had been delivered to protect me from Behçet’s flaring and it worked well both times.

[lesleyg in reply to Stacey-]

Hi Kelly

I put in an SOS for some information and TonyWT gave two excellent links - the second is much easier to read than the first and should answer a lot of your questions (it does speak about pregnancy but not passingly it on). I thought the ladies below answered the question beautifully. Over the years I’ve found out that often we work a lot of things on our own and often it is an article or comments like these on the web that ‘validate’ what we’ve found out. Hope it all goes well. Lesley

[Frogge]

I have three children who I had while dealing with Behcets. Never had any problem with any of them and none of them show any signs of Behcets. They are 29,26, and 24 now with no symptoms whatsoever.

[Legomum]

Congratulations on your pregnancy!

A time to be excited but I can understand your worry too...I have been there.

Most cases of Behçet’s disease are sporadic, which means they occur in people with no history of the disorder in their family. A small percentage of all cases have been reported to run in families; however, the condition does not have a clear pattern of inheritance. More cases are seen along the Silk Route than UK or USA where Behcet’s is a rare disease.

Having said all that, I’m White British ethnicity and my Behçet’s was diagnosed aged 24 and our 2nd child was diagnosed aged 4. The amazing thing is she has access to a national children’s Behçet’s clinic and early symptom identification and relief that was not available for me when I had symptoms as a young child. I feel confident that current research investment into genetics, treatment, new biologic drugs, etc will

reduce risk of her suffering and a cure will be found in her lifetime. Seeing as I was able to live a “normal” life, play sports, graduate, marry, enjoy a career, travel the world with Behçet’s, have children then I see no reason why our daughter will not grow to enjoy all that and more alongside having the diagnosis.

There is helpful info with recent statistics available in Joanne Zeis’s book on Behçet’s which is available via Amazon.

It is very rare for a newborn to present with transient symptoms of Behçet’s. Here is a link to a factsheet on Behçet’s in pregnancy written by UK medics behcets.org.uk/wp-content/u...

And finally here is the response to my own questions about inheritance from Graham Wallace, an immunologist in UK working on Behçet’s disease (BD):

“BD is not regarded as an inherited disease as several components have to come together before an individual will get the condition. However one of these components are genes and gene mutations and these can be passed on from either parent to their child.

However given the complexity of the genes/mutations involved in BD (greater than 50) it is not a simple passage from parent to child. What does occur in BD is known as familial clustering which means that, not surprisingly, genes/mutations are maintained in families as they are passed between generations.

There is another level of complexity in the "environment" can alter genes ie switch them on or off, in a process called epigenetics. This is just beginning to be addressed in BD.

At the moment there is no test that can define the combination of genes/mutations/epigenetics that will lead to BD or determine which manifestations of the condition they will have. Parents should not blame themselves for their child developing BD as there is no way to avoid a particular combination of genes/mutations from both parents that would lead to disease"

Hope this helps you and is not information overload. Hopefully you can get recommendations on this site for a doctor near you with some experience of Behçet’s and pregnancy, or at least a doctor willing to get clued up to help you!

[Soph19]

I’ve got a 6 week old baby and she is absolutely fine. I’m taking azathioprine and my dose was lowered to 50mg from 75mg and was monitored closely. I had to do Clexane blood thinning injections as the doctor said I’d be high risk of blood clots having behcets.

[lillw17]

When I became pregnant with my first child, my daughter, my doctor assured me the risk of having a child with Behcets was extremely low. I took a very low dose of Prednisone throughout pregnancy to minimize my symptoms and was followed closely by my doctor the whole time. However, my daughter started showing symptoms around age 1. She was diagnosed not very long after. She has had great doctors and because of my long battle with Behcets over the years we knew what sort of treatments worked and what didnt. She is now 13 years old and is currently doing monthly infusions of Remicaid which has made an incredible difference for her. She is involved in sports and able to lead a very normal life without symptoms. My second child, my son now 9, has had no symptoms at all so far. I wish you luck.

[Jaxxi]

I have suffered Behçet's symptoms from as far back as I can remember. I have 3 children now in their 20s and 30s and none of them have shown any signs of Behçet's.

[Guna1003]

Yes. I have NBD and my 15 year old son has BD.

[SCMW]

Hi, Behcets can be genetic but equally you can have it without this signature gene. Do you know if you’re HLA B51 positive? Even then there is no guarantee of inheritance. I have it without the genetic background. Best wishes

[2106]

When I had my children they hadn’t a clue about Behcet’s. I had 4 healthy children the first in 1986. None of them have been diagnosed with BD. All the best with your pregnancy, try and enjoy xx