Scleroderma and pregnancy

[Ela1]

Anyone gas got experience taking medicine while bring pregnsnt, or his scleroderma affects pregnancy?

[SarahJane926]

Hi Ela1,

I don't unfortunately but if you are looking at starting a family, you should inform the specialist and they will be able to give all the info you need

Best wishes

[LucyJean]

Hi there, there are very few medications that you can take whilst pregnant so you need to have a discussion with your Rheumatology team (and/or GP) if you are on anything to treat your Scleroderma before starting to conceive. This especially applies if you take any immunosuppressant medication. Depending on your antibody profile you may also need additional advice, support and monitoring of your unborn child as there are some blood markers that can affect the foetus, such as Anti-Ro.

I hope this makes some sense. Basically, never get pregnant without telling your Consultant so you get proper advice and support from the very start.

All my best

Lucy x

[hunkyd0ry]

Hi Ela,

I have looked into this subject recently as I am considering a second child.

I had appointments with the specialists at the Royal Free, as well as a chat with a pediatric nurse specialized in this.

So from what I understand, the following meds are save to use in pregnancy:

Sildenafil, Fluoxetine, Iloprost, Omeprazole

The following are NOT SAFE:

Losartan

I don't know about any others, so might want to check.

Pregnancy with scleroderma is possible but will be considered a high-risk-pregnancy and therefore accompanied with closer monitoring and some additional tests.

The main concerns are to do with internal involvement, specifically with the involvement of heart and lungs.

I personally don't have any internal involvement (apart from the GI tract maybe) and my heart and lung function tests were perfectly fine, so there are in theory no concerns.

What symptoms are concerned, it is likely that during pregnancy you will have a lessening of symptoms as the blood vessels naturally dilate during pregnancy.

Btw... When I was in for my 5 days of Iloprost in January I did chat to other people getting their infusions and not only once I came across a woman asking if the onset of the condition was coincidental with pregnancy. This really made me think as the onset with me was about 3 years after my sons birth.

I did ask about this and was told that with some conditions (such as RA for example) this can indeed be the case (bit of a traumatic experience for the body I guess), but with SSc this has not been proven to be true.

I also asked about the possibility of worsening symptoms after pregnancy, but this was denied - although it might seem like it for a while due to having had a long period of peace from the symptoms. In the same way as when the Iloprost looses it's magic I guess...

Good luck hdx