Behcets and Miscarriage : Hi Does anyone with... - Behçet's UK

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Behcets and Miscarriage

mtmunster profile image
mtmunster

Hi

Does anyone with behcets have experience of a miscarriage. I have neuro behcets. Previously I’ve had clots in the brain and lung. But since I started taking infliximab 4 years ago it has been well controlled. I was diagnosed with a missed miscarriage last Monday and I was given medication to being on the miscarriage but it caused me to get sick, severe pain and hasn’t completely worked. The hospital are reluctant to do surgery to remove remaining tissue because of my history. I wondered if anyone with behcets has had a miscarriage and how it was managed. Thanks

14 Replies

Hello, sorry to hear what you’ve been through. I had 3 miscarriages at different stages in pregnancy after being diagnosed. Each was investigated thoroughly both through the NHS & privately without any formal conclusion. I still do not understand the cause but I’m convinced they were due to Behçets. Sorry I don’t have any positive advice, hopefully someone else might be able to provide some information. Good luck 🤗

mtmunster profile image
mtmunster in reply to Juliauk10

Hi Julia,

Thanks very much for replying and sharing your experience with me, I’m so very sorry to hear about what you have been through. I do wonder if the behcets had an impact on the cause of miscarriage but as you say it’s impossible to tell. It certainly complicated the medical treatment options for dealing with the miscarriage anyway. I wish you the very best. Take care. Mary. x

Juliauk10 profile image
Juliauk10 in reply to mtmunster

Thank you for your very kind reply x If you want to have children I would encourage you to have your miscarriage investigated with any clinicians who will help and please don’t wait as I never had children as any investigations take many years which take up time from our natural body clock x

mtmunster profile image
mtmunster in reply to Juliauk10

Thank you Julia for that advice. I’ll raise this with my rheumatologist first of all. I’m sorry for the sadness and pain this must have caused you. I am about to turn 41, it was my first pregnancy so the odds are against me I know that. But I try to keep that in perspective as I am generally quite well and flare free since 2016. I do hope you are too. All the very best. Mary x

Hi, Ive had two miscarriages myself, march 2019 and august 2019. My aunt who has undiagnosed behcets also had a history of miscarriages.

I m/c at the 4 week mark exactly. It resolved on its own. Since, we have NOT been trying (we werent trying to begin with tbh, once was a condom mishap, the second my cycle was completely off (thanks inflammation) but glad we know what we know now, as we would not have known about the b vitamin deficiency.

I found out that I was B12 deficient, and the m/c confirmed that. Please look into taking a sublingual b complex. My aunt also was confirmed later to have low b12 and needs shots too. Other people who have BD, Ive talked to, are also low (anything under 400 needs supplementation).

heres a link for a cheap supplement that helped me tremendously (besides the shots).

amazon.com/Superior-Source-...

stichtingb12tekort.nl/weten...

sorry for your heartache, but theres hope ahead- xoxo

mtmunster profile image
mtmunster in reply to rooser1

Hi

Thanks very much for sharing this with me. I’m so sorry to hear you had 2 miscarriages -and in 1 year. That is very tough to bear. I do sincerely hope this year has been good to you, (despite Covid). I think you deserve it.

Thanks for this info re B12 and for sending the link. I’ve never heard of the issue re this deficiency and I’m really glad you told me. I’m going to look into getting this supplement. Really useful info thanks very much

Wishing you the very best. Mary x

rooser1 profile image
rooser1 in reply to mtmunster

Pregnancy requires higher demands of b vitamins. I think since we e are immunocompromised, there’s a higher chance of malabsorption and also higher requirements.

Def start a good prenatal now, along with vit d 4000-5000iu daily and the sublingual b complex (make it a forever daily thing).

I’m glad to have learned that what I did when I did. We want to have a family in a few years but obviously, want the body to be as steady and as stable as possible. I couldn’t imagine how hard it would be when we were ready to try and boom, m/c after m/c and had no idea why.

It already took me from Jan 2019 to basically a month ago to get stability from the first deficiency.

Time is of the essence when it comes to fertility for sure.

Good luck, stay safe, stay well. Xoxo

mtmunster profile image
mtmunster in reply to rooser1

Thanks for that. Well unfortunately at least 1 in 4 pregnancies result in miscarriage. This is the reality for all women, behcets or not or whether one is taking b vitamin or vitamin d or not. It is what it is. I have a good few friends who’ve had miscarriages. It’s terribly sad but most of the time chromosomal abnormalities are to blame. Wishing you the best with future plans.

So sorry to hear of your loss. I do hope you can access the best and appropriate treatment to avoid further complications.

If in the UK you could request your local obstetrician consult with, or refer you to see, Dr Catherine Nelson-Piercy who has experience of caring for Behçet’s patients. I know she looked after a Behçet’s buddy who was also on Infliximab in 2 Successful pregnancies.

My main question would be how effective your infliximab is eg have you had the levels checked and is it possible you developed antibodies to infliximab ? Mine stopped working around 18-24 months so I switched to Humira. Your Behcet’s team should be able to review all this, especially as Caution needed with pregnancy when on anti-TNF (I recall signing lots of Consent forms Mentioning the risks when starting the infusions)

I am not sure about the clotting as I have the opposite problem and bleed easily so that happened to me in both my pregnancies, but went on to term and delivery ok. So I guess you should be under obstetric care from day 1, to oversee your clotting and bleeding, your Behcet’s and in view of your past history of miscarriages as may be something unrelated to their Behcet’s. As our fertility really does reduce after about 34, some expert input would be advised. I know plenty of women who had babies in their 40s but almost all were with ivf so counselling on your choices and how much of your heart and body and money to invest may also be a good idea for any couple starting out in their 40s.

Whichever you’ll need time to recover and hope it all goes well.

mtmunster profile image
mtmunster in reply to Legomum

Hi

Thank you very much for taking the time to reply, that’s a good point re antibodies/effectiveness of infliximab I will definitely raise that with my rheumatologist. I am living in Ireland and was due to be under the care of the national maternity hospital and st Vincent’s hospital Dublin (who I attend for behcets) combined. Of course, my first appointment with the consultants was due to be in 2 weeks time but I didn’t make it that far. Completely agree with you re investment of time, money and emotions- it a really honest thing to say to me. This was a spontaneous pregnancy, which followed a failed (1st cycle) of IVF last October. So yes now at almost 41 years old that is something my husband and I are discussing. I do feel I want to give it all another go but I don’t think I have the stomach for 7 or 8 years of trying. I admire the women who do but after being so ill with the behcets for a few years , I don’t know. Anyway I am so glad for you that you were able to go to full term with behcets and wish you all the best. Mary.

I am so sorry for your loss. I have neuro behcets and have had multiple miscarriages. After feeling very sick and in pain for several hours, I was rushed to the hospital. I found out that the miscarriage didn't fully pass. This resulted in an emergency surgery because of internal bleeding. I recovered without any problems. However I don't have blood clots.

mtmunster profile image
mtmunster in reply to Guna1003

Hi,

Thanks for much for sharing this with me, I am so very sorry to hear of your miscarriages.

Your experience of the miscarriage not passing sounds almost identical to what happened to me. As you’ll know having neuro behcets, our pain thresholds are pretty high so if we identify the pain as severe, it is definitely bad. I had a D& C since I posted my first question, on Wednesday and it went fine. The hospital were reluctant to do it at first but after I explained the behcets again and they consulted with maternal haematology, they went ahead.

Can I ask you if the cause of the miscarriages was investigated and if it was ever linked to neuro behcets? If you would prefer not to disclose/discuss this I completely understand.

Sending you my best wishes, Mary x

Hi. I had a miscarriage at 9 weeks about 22 years ago but as I hadn't been diagnosed at that time and also have pcos it has never occurred to me that it could have been related to the Behcets until I read this. I have always blamed the pcos and at the time doctors told me my ovaries were so bad I would be unlikely to conceive again. I already had a son so just accepted what they said and you can imagine my delight 18 months later when I gave birth to a daughter. However the birth was full of complications and almost resulted in the pair of us not being here. This was the start of my health deteriorating and eventual recognition of possible Behcets. My daughter also has Behcets and pcos. She has just turned 19.

I would ask about the possibility of being referred to a specialist hospital / surgeon for surgery as it can't be good to leave the tissue behind whether you want to conceive again in future or not, because it might cause future complications.

I hope you manage to get this sorted and my heart goes out to you x

Hi, My first baby died in-utero at 25-26 weeks pregnancy. I was 21 and had been afflicted with all-over body rashes and also walking difficulties due to a very painful hip at the time. Back in those days (1984) it was recorded as a ‘missed abortion’ which was quite painful to hear as I really wanted the baby. I had to go in and have labour induced.

I later went on to have four other children, but during the pregnancy of my first son the consultant was concerned because there’d been no explanation for the previous interuterine death. I continued to have the skin and joint problems, and was later given a tentative (wrong) diagnosis of Lupus. The rheumatologist said that interuterine death was something that sometimes happens with Lupus. I was only given the Behcets diagnosis in 2017, and it may explain why my first baby died inside me.

I hope you’re recovering as best you can from your miscarriage.

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