Pregnancy questions

[luna_lovegood]

Hello! I have been diagnosed with Diffuse Scleroderma this year and have been in Mycophenolate since July. I know that it has bad effects on pregnancy so rheumatologist said to be careful. My partner and I are planning to have kids. Did anyone here get pregnant while having this illness? What are your experiences? Please let me know!

[TopCat07]

Hi Luna,

I had children prior to being diagnosed. I am also on MMF and was asked a number of times about more children prior to starting it. My understanding from what my consultant told me is that if I wanted more children an alternative medication would need to be started first. So you need to speak to your consultant/rhumey. My understanding is that MMF increases the risk of miscarriage by 50% and also increases deformities and abnormalities in the foetus. So my advice would be to speak to your specialists before you start trying for a baby.

Sending you lots of love at this time. Xxxx

[MaryC13]

heyyy I was diagnosed with diffuse scleroderma 6 years ago. I was 5 months pregnant at the time so hadn’t started mycophenalate at that point. But my pregnancy was fine…I was poorly a lot with chest infections etc but it was ok. My little boy was born small at 5lb9 but perfectly healthy ☺️ I haven’t since had anymore children as they don’t really want me to come off mycophenalate at the moment. I hope you are well and if you would like to talk or ask any questions feel free to message me x

[Nw6London]

you will need to gradually be taken off mycophenalate (gradual reduction) and be completely off for at least 6 months. We’re currently in this process at the moment, with some way to go. They will monitor the stability of the disease and see how you’re coping first. MMF isn’t compatible with breastfeeding or pregnancy, as you know. I was on hydroxychloroquine with my first and breast feed with that. (I was only diagnosed post birth.)

My disease, undiagnosed affected my pregnancy as my severe Raynauds affected the blood flow to baby’s brain and after my 22w scan, we realised wasn’t growing. So it was a managed pregnancy from there. Weekly monitoring and being uber careful and cautious. We had the best team at UCLH’s small baby clinic and whilst he was very small (2.54kg), he was healthy. After that experience, it’s clear that my body can’t tolerate another pregnancy, so we’re looking at options.

Thinking with a clear and objective mind, if we do get the chance to try for a second baby, i would also store some eggs /embryos JUST IN CASE something happens to trigger your disease and produce obstacles to you expanding your family. At least then you will have options to consider.

Good luck Luna! These conversations can be so painful and these diseases can affect our lives in so many unexpected ways. In the meantime, maybe do a fertility MOT to see if you can in fact attempt it. So many of us think WHEN we have a baby, many times it’s IF.

Feel free to PM if you have any further thoughts/comments. You’re in a great community.