Behcets in pregnancy

[MaisieGo]

Hi guys, I’m 32 and been diagnosed with behcets back in 2011. I’ve been on colchicine since and prednisolone when I have flares. I found out a while ago that I was pregnant (on colchicine) and my gp freaked out and asked me to stop the medication which I did immediately. A few weeks after had a miscarriage with blighted ovum. Currently I’m recovering from that event and I’m still off of my medication with no apparent symptoms. I can’t seem to find any useful advice on what is best to do on the next pregnancy or if this episode had anything to do with being on the medication. Doctors may seem to think I should take aspirin for the next pregnancy? Any thought about how am I gonna proceed please?

[Legomum]

So sorry to hear about your loss. Take time to rest and recover. This info leaflet may be helpful behcets.org.uk/Documents/we...

[Legomum]

I had 2 successful pregnancies. I did not take aspirin in pregnancy, and I have no history of clots/ DVT. I was on prednisolone and Azathioprine and was given some iv steroid around the time of delivery as highest risk of Behçet’s flare is after the birth. Your doctors could consult/ refer to Dr Catherine Nelson-Piercy for advice. She is a professor in obstetric medicine at Guys Hospital London and offers pre-pregnancy counselling for those with pre-existing medical conditions and also wrote the guidelines on reducing risk of clotting in pregnancy. She advised a friend with Behçet’s who was taking Infliximab and went on to have 2 healthy children.

[magician]

Sorry for your loss. And my apologies for responding though I have no “wisdom” to offer.

I just wanted to share that I had a miscarriage in my early twenties. I was not under medication. The doctor did not give me information as to cause of miscarriage. I was not yet diagnosed at that time for BD (diagnosis was in 2007), but had symptoms since childhood.

Take care

[Frank22222]

Im sorry for your loss....i had 2 successful pregnancies best time without flares....after birth flared i could only breastfeed for one month with first due to flare(i didnt want baby jace to get prednisone) second i pushed through to 2 months breastfeeding(baby nemya i didnt want to get prednisone through breastmilk) both healthy happy kids 6 and 4 you can and will get through but asap finding out i was off exact meds but with jace...1st preg i found out at 7 1/2 weeks off meds instantly...i didn't go back on except prednisone for flares...my choice best luck

[rooser1]

Hi. I am 31 and am medication free for the past 2? Maybe 3 years. I control my flares using diet, plenty of sleep, and controlling my activity and stress levels.

I too, have had two miscarriages recently. But also have been found b12 deficient. I just started on shots in May. First mc was in March, the other was August. Both were from b12 vitamin deficiencies (missed my August shot). Chronic inflammation and colchicine deplete b12 levels. My hematologist (he’s new since Jan) was pissed at my rheum for not catching it earlier. I was tested for b12, folate. Parietal cell antibodies and intrinsic factor (these are tests for pernicious anemia). It’s a simple blood test. Please look into it

Best advice to give is to have your b12 checked, anything under 400(the level goes from150-2000) needs supplementation. There are fantastic sublinguals from amazon super cheap. I use the now brand, methylcobalamin 1000mg. The bf also uses them (he’s normal) and noticed a difference for himself.

Miscarriages happen a lot more than people realize, doesn’t make them easier especially when we’ve got something a little more complicated going on in the background, but please know it’s common- your little rainbow will be along soon enough.

[MaisieGo]

Thank you everyone for sharing your experiences, means a lot!

[cpops]

Yes aspirin sounds like a good approach. I know that other diseases such as APS cause clotting issues and miscarriages so perhaps that is where your doctor is coming from.

When you get pregnant again the good news is that your body produces natural steroids in pregnancy which will make you feel better than expected. However the danger period is postpartum as your hormones will take a nosedive. However your fetal medicine specialist or Obstetrician can start iV steroids after delivery to cover you for this. My FMS (Lorin Lakasing) did an MD on this subject.

Good luck

[Legomum]

If you are in the UK, I have just seen there is a talk on pregnancy in Behçet’s on Sat 19th October at the charity Behçet’s UK annual meeting. Dr Sofia Tosounidou listed as the speaker that afternoon.