Thursday, January 22, 2009

Behcet's disease and pregnancy -- Part 2

The following information is a summary of a pregnancy/postpartum survey that I conducted in 2005-2006 of American women with Behcet's disease.

Please note:
This survey is far from scientific, and I am not medically trained. It's presented as a retrospective review of the pregnancy experiences of 65 American women. For those people who would discount the responses of the women who relied on their memories, though, I beg to differ: Pregnancy experiences (especially uncomfortable or bad ones) tend to sear themselves on the memories of the women who went through them, persisting even years later. On that basis, I believe that this information is valuable background material for women and couples who would like to conceive.
Please speak with your doctor(s) about about any concerns or questions you might have after reading this material. Do not base your own pregnancy decisions exclusively on the results reported here.

OBJECTIVE: No studies have been published to date that focus exclusively on pregnancy in Behcet's disease patients in the U.S. For this reason, a comprehensive survey of American women with BD was conducted from November 2005 through June 2006.

PATIENTS/METHODS: American women with Behcet's disease were invited to participate in a retrospective online survey of their pregnancy experiences. The offer was extended to U.S. members of the American Behcet's Disease Association, in addition to American members of three separate Behcet's patient support groups on the Internet. 100% of the participants had been diagnosed according to the criteria of the International Study Group for Behcet's Disease.

38% of the women relied on their memories and copies of their medical records to complete the survey
58% relied on memory alone
74% of respondents were "very confident" in the accuracy of their responses
24% were "confident" in the accuracy of their responses

19 of 31 pathergy test recipients (61%) reported positive results.

14 patients received HLA screening: 3 (21%) exhibited HLA-B5 or B51.

Of 37 women who knew their blood type:
  • 24 (65%) women had type O, with 19 (79%) of those women reporting O+
  • 9 women (24%) reported type A
  • 4 (11%) reported type B

: Sixty-five women completed the survey, with a total of 204 pregnancies. This is the largest survey of Behcet's pregnancies to date in any country. There were 137 live births (67%) and 55 miscarriages (27%), although 7 women alone were responsible for 35 of the miscarriages. Because there is no way of knowing the medical reasons behind such a large number of miscarriages in these 7 women, the miscarriage rate is unreliable.

53 pregnancies (39%) classified as high-risk.
92 natural births (70%) and 40 C/sections (30%, n=132).

Please note: There is no proven connection between Behcet's disease and the development of any of the health issues or complications reported here. The reported problems can also occur in the pregnancies of women who do not have Behcet's.

Reasons given for having a C/section included:

  • Previous C/section (8 deliveries)
  • Breech position (2)
  • Large baby
  • Prolapsed cord
  • Failure to dilate
  • Premature birth
  • High blood pressure
  • Transverse position and early labor
  • Fetal distress and IUGR (intrauterine growth restriction)
  • Fear of rupturing weak/previously-hemorrhaged retinal blood vessels during labor
  • Death of placenta
  • Possible tear in uterus from previous C/section scar

While pregnant:
  • 20% of respondents reported that their BD symptoms got worse during pregnancy
  • 41% had symptom activity levels that matched pre-pregnancy levels
  • 14% had fewer symptoms than before getting pregnant
  • 13% had total remission of all symptoms

Flare-ups during 204 pregnancies included:
  • Oral ulcers (23%, 46 pregnancies)
  • Arthritis/joint pain (22%, 45 pregnancies)
  • Genital ulcers (18%, 37 pregnancies)
  • GI problems (17%, 34 pregnancies) *
  • Skin lesions (16%, 32 pregnancies)**
  • Neurological problems (5%, 11 pregnancies) ***
  • Uveitis (1%, 3 pregnancies)
* IBS (6), severe abdominal cramping (4), severe vomiting (4), GERD (3), hiatal hernia, unexplained diarrhea (2), pain/mucous with stools, duodenitis, anal fistula, severe sore throat diagnosed as strep with negative strep test, unexplained lower right quadrant pain.
** "Raised red bumps" (6), lichen planus, cystic acne (2), pustules, unexplained rashes (2), large single bumps on legs, folliculitis (3), clear fluid-filled blisters on hands (2), lesions on leg/trunk/upper arms, sores on buttocks/legs.
***Double vision, dizziness, memory loss (3), optic neuritis, coordination/balance problems, peripheral neuropathy, tremors, loss of sensation from waist down, weakness/numbness in legs, headaches (4), migraines (4).

Timing of flares during pregnancy:
  • 40 pregnancies (57% of 70 responders) had first-trimester flares
  • 18 (26%) had second-trimester flares
  • 12 (17%) flared in the third trimester

After delivery:
  • 37% of women had an increase in their symptoms over pregnancy levels
  • 36% remained at pregnancy levels
  • 11% had fewer symptoms
  • 7% reported remission of all symptoms

Location of symptoms after delivery (includes symptoms occurring after miscarriage or pregnancy termination):
  • Oral ulcers (26% of 204 pregnancies)
  • Arthritis/joint pain (24%)
  • Genital ulcers (20%)
  • GI (18%) *
  • Skin lesions (17%) **
  • Neurological problems (11%) ***
  • Uveitis (3%)
*IBS (6), gastric ulcerations (3), anal fissures, anal fistula, GERD, duodenitis, severe cramps, diarrhea, blood in stool, bleeding ulcers, diagnosed with ulcerative colitis.
**Pustules (5), unexplained rashes (4), bad/cystic acne (4), lichen planus (2), pityriasis rosea (2), red nodules on legs (2), "red bumpy rash on arms" (2), folliculitis, "lesions on fingers," rash over entire body, painful red nodules on legs & groin, painful genital sores/lumps but no open ulcers, erythema nodosum, "nodules," vasculitis lesions.
***Severe headaches/migraines (8), stiff neck (3), peripheral neuropathy (3), seizures (2), coordination problems (2), short-term memory loss (2), tremors (2), optic neuritis, balance problems, numbness in extremities, "swelling in brain," TIAs, stroke, ocular migraines.

Breast- vs. bottle-feeding
  • 41 (31%, n=132) infants were breast-fed
  • 54 (41%) were bottle-fed
  • 37 (28%) were both breast- and bottle-fed.
Breast-feeding problems included:
  • No milk/not enough milk (12 pregnancies)
  • Difficulty latching on/sucking due to prematurity (4)
  • Nipples bled during nursing
  • Severe nipple irritation/infection
  • Infected milk ducts
  • Quit due to baby's health problems
  • Quit due to mother's need to use Behcet's meds after delivery
  • Too much milk produced
Infants' health problems in first 3 months:
(Please note: There is no proven connection between Behcet's disease and the development of any of the health issues or complications reported here. The reported problems can also occur in the infants of women who do not have Behcet's.)

Jaundice (30 infants)
Low birth weight / premature (16)
"Breathing problems" (3)
Pneumonia (3)
Hole in heart (3)
Projectile vomiting (3)
Mouth / throat ulcerations (3)
Born with partially fused skull (craniosynostosis) (3)
"Skin lesions" (2)
"Unknown inflammation" (2)
Fever of unknown origin (2)
Ear infections (2)
"Chicken pox" at 6 weeks
"Developmental delays"
Apnea with bradycardia
Arnold-Chiari malformation
Born with bacterial infection; IV antibiotics for 3 days
Born with high platelet count
Both lungs collapsed
Developed seizures at one month
Failure to thrive
Heart murmur (aetrial septal defect)
Hip dysplasia requiring cast
Hypoplastic left heart syndrome
Klippel-Trenaunay (port wine stain from torso to feet; varicose veins)
Low white count
One hip and knee rotated to one side
Pyloric stenosis
RSV (Respiratory Syncytial Virus)
Severe cavernous & capillary hemangiomas on face, nose, gums
Slightly detached retinas at birth
Umbilical infection
Vesicoureteral reflux

(n=137 live births; 73 infants (53%) had health problems reported by mother in first three months)

When asked if they would relive their pregnancies:
  • 42 mothers (65%, n=65) replied "Yes Definitely"
  • 12 (18%) said "Maybe"
  • 5 (8%) "Don't Know"
  • 1 (2%) "Probably Not"
  • 5 (8%) "Definitely Not"