Pregnancies

[Emfrenette]

Has anyone had pregnancy with Crest /reynauds ? And was is a high risk ?

[NikkiDoggett]

Diffuse scleroderma and Raynaud , 15 years ago, I was monitored every week, whenever my blood pressure was high. I was on so much medication it was crazy! I was high risk and there was hardly any information about at all. I was under the Royal Free. You should of seen the face when I told them I was pregnant? ( 😱) at 5 months went into kidney failure and my husband was told to prepare that he may well loose us both quite soon! ( I wasn’t aware I was in that much danger till much later) I was so drugged up? Anyway my son was born 10 weeks early weighing 3lb. I the delivery room at Milton Keynes Special care baby unit I had every specialist waiting. Well he was born I got to hold him. He was FINE ( our little miracle) being premature he did not have the ability to swallow or remember to breathe so that was helped by tube feed and caffeine. He is 15 and 6 ft tall and I am so lucky to have the outcome I did. I was then in a crisis and the illness got worse. But like I say I do it again in a heartbeat. Didn’t have another child as the risk was far too high what with less than one kidney functioning. To leave my boy motherless, no I we had our baby. Sorry banged on a bit good and bad news.

Hope it gives you a little insight.

[Hidden]

I spoke to my rheumatologist about this a couple of years ago. I have limited ssc. He said it’s categorised as a high risk pregnancy but as I’ve no organ involvement there’s no reason why I couldn’t have a child. He said when I am pregnant to let him know and he’d refer me to all the specialists needed to monitor. He said basically I’d need a bit more monitoring than normal and during pregnancy I’d feel much better (as during pregnancy your immune system is suppressed to avoid rejecting the baby’s foreign DNA) and then after birth I’d have a spike in symptoms for 3 months as the immune system kicks back in (perfect time to be laid up in bed!!) It really depends on the involvement you have; I believe those with kidney/liver involvement are advised not to get pregnant, but you’d have to speak to your doctor re. Your own circumstances. I have other considerations (genetic condition and medication for paresis I couldn’t take during pregnancy) which have me falling on the side of not having children after having considered all of the factors for me personally. Hope this helps

[LucyJean]

Hello there, the answer to your question is that it is more difficult than if you didn't have the condition but depending on your symptoms and blood results it is perfectly doable, it just needs really careful management and monitoring and should ideally be done with the knowledge and support of a good medical team.

Here are the main issues:

1. If you have organ involvement, especially the kidneys then this is a real risk factor as the strain on the kidneys is increased during pregnancy and if there is existing damage then you may have a situation similar to that described by Nikki below.

2. If you have an anti-nuclear antibody test (ANAs) that shows you are positive for Anti-Ro then this leads to a small risk that your baby with be born with congenital heart block and this needs very careful monitoring

3. You must not be on any immunosuppressants when you conceive or are pregnant due to the risk to your unborn baby. This is why things need planning, as you need to tell your team you are going to get pregnant, and come off the drugs. Depending on what you are on this could be as much as 6months prior to conceiving. If you are reliant on your medications to manage your symptoms then the risk is that you have a flare during pregnancy, or post pregnancy during the breast feeding stage.

I hope that helps. Basically, talk to your consultant and get everybody on board to support you!

All my best

Lucy xxxxx

[X-Woman]

Raynaud's more often than not goes into remission during pregnancy. At about 6 weeks aftet giving birth it returned again with me.

I was told I had to stop working at around 20 weeks pregnant because I was standing on my feet in a very busy job, and my BP was low and I was very light headed and fainting. I was able to stop all my meds I was taking for my Raynaud's too.

I don't have CREST or Scleraderma so don't know about that

[Emfrenette]

Thanks everyone I dont have any organ involved yet. I'm still getting stays done next week but only for my wrist and hands . So nothing too serious yet