Hi I have SLE with Raynaud's Phenomenon, I am also trying to get pregnant right now. With that in mind my Rhum took me off of my Nifedipine since it is a class C drug and can cross the placenta. I was doing well for a while on the meds but now that I'm off my hands and toes are getting bad again. My question though has anyone here experinced or known someone who has experienced Raynauds while pregnant? Did it get better for a while or did it escalate? I know all our… read more
I didn’t have Raynaud’s but I did have a lot of inflammation and my arms and my legs would fall asleep if I stayed in one position. At the time though I hadn’t been diagnosed with lupus yet, even though my lab work and I can’t remember the names of it right now where very elevated so I was made a high risk pregnancy. They monitored my fetal heart tones weekly until week 28. And since my daughter didn’t develop the heart defect they said I was in the clear. About 4 days after she was born she developed a rash all over her face and heard. We went to the pediatrician 5 times and no one could tell me what was wrong with my baby. Finally I made an appointment with a dermatologist who took one look at her and diagnosed her with neonatal lupus. No one ever told me this could happen to my baby and no one knew anything about it because it is so rare. I wish I had been diagnosed with lupus before I was pregnant because I think I would have been better prepared. Even after all the abnormal blood tests no one thought to refer me to a rheumatologist. So after all that my biggest suggestion is to learn everything you can about being pregnant with lupus and how that will affect your baby.
JRayRN, thank you. I'm sorry they weren't able to help you more before your pregnancy. Im try to do as much research as I can and my doctor says I'm in a good position with my lupus to try and get pregnant, i just with there was more info on secondary Raynaud's and pregnancy. Thanks again 😊.