Registered: 1426275079 Posts: 14
I am in a strange dilemma in my life. Little back ground on me. I'm 29 years old, have had lupus for 5 years. Haven't had a flare in 3.5 years. My last major flare was after the birth of my daughter in October of 2013. My daughter was born via C-section at 40 weeks completely healthy. Two days after her birth and while I was still in the hospital my lungs hemorrhaged and I was in a coma for 10 days. I was given IV Cytoxan and pulse steroids, my family made sure that Lupron was given to protect my ovaries. After I was extubated, I had a long recovery for about 6 months where I was weaning off of steroids and feeling not great. Oh, and we had a new born baby that needed to be loved, fed, burped, changed and bathed. It wasn't a particularly enjoyable first year for me of my little one's life. But it could be worse, right? I could have died and not been there for her at all.
Since then, other than some wonky blood work from time to time, I physically feel fine. I feel fine enough, that if you erased the 5 minutes of my life that use to take my daily medicine, I wouldn't know that I have lupus. I feel fine enough that this itching urge to have another baby and embark on a pregnancy seems doable. Crazy, right? The mortality rate for what happened to me after my daughter's birth is very high (in certain studies) This particular symptom of lupus (diffuse alveolar hemorrhage) doesn't happen to many people. See, there were a lot of what ifs surrounding my pregnancy, which may explain that itching urge to try again. What if I hadn't been in a flare when I got pregnant, would there have been a different outcome? What if I had been on a stronger medication during my pregnancy? What if I hadn't had a C-section after a full 24 hours of labor that left me exhausted? What if I had been given some steroids to cope with the stress of labor and surgery? Not playing a blame game with doctors or trying to sound like a Monday morning quarterback. I blame myself for not taking care of myself prior to pregnancy. For not getting a handle on this disease I knew basically nothing about. The short of this is- my "what ifs" can't trump the fact that no one can say for certain that this wouldn't happen again. I'm a rarity- and unfortunately that means little to no data to predict an outcome. Over the last few years I've heard a variety of different responses from different rheumatologists and ob/gyns ranging from "no don't ever try to get pregnant again", "would you like to have your tubes tied?" to "I think you could have an happy outcome with appropriate care/medicine". Talk about unsettling and confusing, and just flat out scary. So that's that. Bring in my beautiful, older sister who has generously offered over the last few years that her uterus in open for business. In other words, she is offering to be a gestational surrogate for me by using one of my husband and I's embryos, that don't currently exist. Even though this surrogacy route is extremely complicated and expensive, the idea that I will most likely be healthy when my child is born is a wonderful feeling. My questions to put out there is.. Has anyone ever done this? Or more specifically has anyone ever undergone IVF? I'm young and fertile, so I'm pretty sure my eggs are in good shape. I'm wondering if anyone has gone through this with lupus- how did the hormones affect you? Did they try lowering the amount of hormones that were administered to prevent disease activity? Sorry for the story book- I can't find a lot of information out there on lupus patients who have undergone this.
Registered: 1490230191 Posts: 148
I know one of the doctors at Hospital for Special Surgery (HSS) in NYC specializes in Lupus and pregnancy- Jane Salmon. She has lead a study called
PROMISSE (Predictors of pRegnancy Outcome: bioMarkers In antiphospholipid antibody Syndrome and Systemic lupus Erythematosus) Study. There may have been work she has done on IVF and the hormones and process that goes along with that. https://www.hss.edu/physicians_salmon-jane.aspI don't know of your proximity for a consult, but they do online consults as well. https://www.hss.edu/econsult-second-opinion-how-it-works.asp
Senior Contributing Member
Registered: 1418249911 Posts: 4,712
Pregency brought out my lupus but my sister who also has lupus her lupus got better
__________________ The bond that links our true family is not one of blood, but one of respect and joy in each other's life
Registered: 1444322970 Posts: 30
My OB has said based on my previous two pregnancies he would expect me to be fine but likely have a flare right after. I managed pre-diagnosis but now armed with information he feels we would be okay.
However, it does make me pause and wonder if I really want a third. I know I wanted a second for sure.
Registered: 1426275079 Posts: 14
Tigger1219 It's a tough call.. Pregnancy was tough by itself and add on a chronic illness on top of that. But if your doctor feels pretty confident and understands that you might flare after you have a baby, that would make me feel better. No doctor I had told me that a flare was probable after birth. Sounds like you have an intelligent doc looking out for you. @upstater I've been to HSS. They were 1 of the 4 opinions I sought- and were definitely the most positive in terms of me carrying a baby. On a side note- I turned 29 today.. hearing that clock tick :-P
Registered: 1452908045 Posts: 465
I just wanted to let you know that I went through this process for my sister, however, it was a few years before my official SLE dx so IDK how much help I can be. [I was symptomatic though and should have been in a rheumy's care years before I actually made it in. Had I gone in during this time, no doubt, I would've at least had UCTD dx.] The month-long process with the numerous, tedious fertility clinic visits & blood draws, along w/ the daily injections for both my sister and myself was hard on us both, but it was a success. She now has two beautiful daughters, after thinking she would never have children. They harvested 14 of my eggs to pair with her husband's sperm and implanted the embryos in her. I, too, had offered to carry the baby, but was relieved that they only needed my eggs --especially now since my next pregnancy was when s#!t hit the fan for me (w/ progression of SLE). My experience was awful, but I was determined to help my older sister. If you do it, make sure you and your sister have space to breathe... and a referee (lol) as the hormones can make you feel pretty emotional and cranky --like PMS x 100! I did suffer from intense migraine-like headaches, sweats & chills, and a surge in pain. I saw your post many days ago and have been thinking a lot about this experience, and debating on whether I wanted to share such a personal story in reply. Bottom line: your sister is Awesome and I hope you show her sincere respect and gratitude. You do have a child already --and lupus, and are very fortunate to be in remission and have a lovely family so think long and hard if you want to even possibly rock the boat. Only you, your specialists and family can make this decision. I wish you the best!!! <3