Behcet's disease and pregnancy -- Part 1

"I have Behcet's. What will happen if I get pregnant?"

It's one of the most sensitive subjects facing women who have Behcet's -- and it's also one of the questions that I receive most often through my website. I'm going to address it in a couple of parts. Today I'll cover my own experiences with pregnancy, and some of the more recent research studies done on the subject. The next post will cover the results of a survey that I did of 62 U.S. women with Behcet's who went through one or more pregnancies.

Keep in mind -- just like regular Behcet's symptoms and experiences, my experiences with pregnancy (and afterwards) may not be yours. Don't base your own decision on my situation! And as you'll see in the next post, there's a wide variety of experiences, but one overriding feeling: The majority of women who've had children didn't regret their decision to get pregnant.

My own pregnancy experiences:

I've had Behcet's for 29 years, and went through two successful pregnancies. My first pregnancy occurred when I was 33, and the other at 36. My children are now 17 and 19 years old and healthy, and I wouldn't have traded my pregnancies for anything -- even though both were classified as high-risk.

I didn't take any meds during my first pregnancy, or while I was trying to become pregnant. Of course that didn't help my problem with mouth/genital sores and occasional uveitis, but I went ahead anyway. (I've since found out that it's possible to take low levels of prednisone before/during pregnancy -- But check with your doctor first. I'm not qualified or trained to offer medical advice.)

It took almost a year before I conceived -- due, in part, to being wrong about my ovulation dates. After finally using an over-the-counter ovulation kit, I found out that I had an unusual cycle. Once that was cleared up, I was pregnant within three months.

During my first pregnancy, I was healthier than I'd been in years. I ate well, gained weight, and -- best of all -- my BD symptoms stopped cold. No, that doesn't happen for everyone.

When my pregnancy was at 30 weeks (out of the normal 40), I noticed a total change in my baby's movements. He went from being extremely active, to almost no movement over the course of three days. Up to that point I hadn't been classified as high risk, partly because I still hadn't received an official Behcet's diagnosis yet. My son started moving again, but slowly, and I was scheduled for stress and non-stress tests, and weekly ultrasounds. I still felt fine physically, though.

Within a couple of weeks, it was clear that my son had stopped growing (diagnosed as IUGR: intrauterine growth restriction). At that point, the goal was to keep him in the womb as long as possible so that his lungs could develop well; by 36 weeks, though, testing showed that he was stressed enough that he needed an early delivery. I had a C/Section the next day. My son was around 5 lbs at birth -- so tiny! He didn't nurse well, cried continually, hardly ever slept, and kept losing weight. He was finally hospitalized 10 days after birth for what was probably neonatal Behcet's disease -- my immune system caused him to have temporary BD-like symptoms. He had a fever, diarrhea, vomiting, and throat ulcers. He was fine again within a week. Other than frequent problems with ear infections and pneumonia when he was a baby, he's had no other health issues...and definitely no Behcet's-like symptoms.

[ IUGR is described in one Behcet's medical case study that's been published, but doesn't appear to be common. (Here's the abstract: http://www.ncbi.nlm.nih.gov/pubmed/9280100 )
Here are a couple of full articles on neonatal Behcet's disease:
http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=1777948&blobtype=pdf
http://rheumatology.oxfordjournals.org/cgi/reprint/36/6/700 ]

In my second pregnancy, I had a flare-up of retinal lesions at 4 months (which remained active in spite of two rounds of laser surgery), but the problem disappeared on its own after delivery. My daughter had no problems, either during pregnancy or after her birth. Except for one scary episode when she was 6 (she had a mouthful of ulcers, fever, and double vision), she's been very healthy. She's 17 now.

The issue of which immunosuppressive or anti-inflammatory meds can be used during pregnancy comes up a lot. Here are references for the best articles I've found on the subject. Your doctor should be able to get copies of each of them.

1: Østensen M, Lockshin M, Doria A, Valesini G, Meroni P, Gordon C, Brucato A, Tincani A.
Update on safety during pregnancy of biological agents and some immunosuppressive anti-rheumatic drugs.
http://www.ncbi.nlm.nih.gov/pubmed/18504282
Rheumatology (Oxford). 2008 Jun;47 Suppl 3:iii28-31.
PMID: 18504282 [PubMed - in process]

2: Østensen M, Khamashta M, Lockshin M, Parke A, Brucato A, Carp H, Doria A, Rai R, Meroni P, Cetin I, Derksen R, Branch W, Motta M, Gordon C, Ruiz-Irastorza G, Spinillo A, Friedman D, Cimaz R, Czeizel A, Piette JC, Cervera R, Levy RA, Clementi M, De Carolis S, Petri M, Shoenfeld Y, Faden D, Valesini G, Tincani A.
Anti-inflammatory and immunosuppressive drugs and reproduction.
http://www.ncbi.nlm.nih.gov/pubmed/16712713
Arthritis Res Ther. 2006;8(3):209. Epub 2006 May 11.
PMID: 16712713 [PubMed - indexed for MEDLINE]

3: Janssen NM, Genta MS.
The effects of immunosuppressive and anti-inflammatory medications on fertility, pregnancy, and lactation.
http://www.ncbi.nlm.nih.gov/pubmed/10724046
Arch Intern Med. 2000 Mar 13;160(5):610-9. Review.
PMID: 10724046 [PubMed - indexed for MEDLINE]

4: Ramsey-Goldman R, Schilling E.
Immunosuppressive drug use during pregnancy.http://www.ncbi.nlm.nih.gov/pubmed/9031380
Rheum Dis Clin North Am. 1997 Feb;23(1):149-67. Review.
PMID: 9031380 [PubMed - indexed for MEDLINE]

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And here are some of the more recent abstracts on Behcet's and pregnancy. Each link will take you to the abstract. I've included a short excerpt of the most important info from one of the studies, which reviewed the medical literature on 44 pregnancies.

1) J Dermatol. 2003 Jul;30(7):499-502.
The clinical course of Behçet's disease in pregnancy: a retrospective analysis and review of the literature.
http://www.ncbi.nlm.nih.gov/pubmed/12928538
Uzun S, Alpsoy E, Durdu M, Akman A.
Excerpt:
\\The existence and incidence of symptoms were recorded during these periods. There was remission of Behçet's disease during 23 (52.3%) pregnancies, although the disease had been in a stage of exacerbation before pregnancy. The disease became exacerbated during 12 (27.3%) pregnancies, although it had been in a stage of remission before pregnancy. There were no changes in the clinical course of Behçet's disease in 9 (20.4%) pregnancies. The most frequent manifestations of the clinical exacerbation were increases in the intensity and severity of outbreaks of oral ulcers during pregnancy. Outbreaks of genital ulcers, eye inflammations, and arthritis were other signs of exacerbation. \\

2: Jadaon J, Shushan A, Ezra Y, Sela HY, Ozcan C, Rojansky N.
Behçet's disease and pregnancy.http://www.ncbi.nlm.nih.gov/pubmed/16167908
Acta Obstet Gynecol Scand. 2005 Oct;84(10):939-44. Review.
PMID: 16167908 [PubMed - indexed for MEDLINE]

3: Bang D, Chun YS, Haam IB, Lee ES, Lee S.
The influence of pregnancy on Behçet's disease.http://www.ncbi.nlm.nih.gov/pubmed/9509914
Yonsei Med J. 1997 Dec;38(6):437-43.
PMID: 9509914 [PubMed - indexed for MEDLINE]

4: el Hajoui S, Nabil S, Khachani M, Saadi N, Bezad R, Chraïbi C, Alaoui MT.
[Pregnancy in patients with Behçet's disease]http://www.ncbi.nlm.nih.gov/pubmed/11826577
Presse Med. 2002 Jan 12;31(1 Pt 1):19-20. French.
PMID: 11826577 [PubMed - indexed for MEDLINE]

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And finally, a thought-provoking article was just published this month, saying that Behcet's-like lesions were found in the placentas of some mothers with BD:

Hum Pathol. 2009 Jan;40(1):135-8. Epub 2008 Aug 19.
Necrotizing villitis and decidual vasculitis in the placentas of mothers with Behçet disease.
http://www.ncbi.nlm.nih.gov/pubmed/18715615
Hwang I, Lee CK, Yoo B, Lee I.

My next post will cover the survey that I did of 62 U.S. women with Behcet's disease who went through one or more pregnancies.