Planning pregnancy: questions to ask: Hi all, Sorry... - LUPUS UK


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Planning pregnancy: questions to ask

November90 profile image
10 Replies

Hi all,

Sorry, this is a bit of a "personal" one but I have a follow-up rheumatology appointment in a week and a half and I am trying to plan what to ask about this.

I'm 28 and my husband and I were planning (before my diagnosis!) to start trying for our first child. I had a miscarriage at 10 weeks in November '18. I've not really had any lupus symptoms except for kidney involvement and low white blood cells / anaemia, and I haven't really felt any symptoms physically at all - but the rheumatologist I saw asked if we were planning and said it would be wise to wait until things were more stable.

I'm trying to think about questions to ask in advance, and I'm wondering if anyone can think of anything obvious that I've missed!

- Is there a risk that existing kidney problems can worsen with pregnancy?

- Are continued very low white blood cell counts an issue? (The anaemia I have under control, but literally nothing seems to boost the WBC!)

- I have anti Ro and anti La antibodies and I understand that there is a risk of neonatal heart block (am I correct on that?). How much of a risk / can this risk be mitigated?

- Is pregnancy likely to cause a flare / worsening of existing symptoms and effects?

- Should we just be giving up on the idea altogether?!

Thanks for reading and sorry that this is a bit of a personal one... just literally everything I read seems to be contradictory and I want to know which Qs to ask!

10 Replies

I should try to find out what medication you might be given, as some of the drugs such as Methotrexate are dangerous for unborn babies. But there are others which are safer. Good luck in your venture. This website may be helpful.

November90 profile image
November90 in reply to

I've taken MPA (Mycophenolic acid) for lupus nephritis. Nothing else to date, but I will ask - thanks!

JoyJoy123 profile image
JoyJoy123 in reply to November90

Good morning,

Sorry to hear about your miscarriage. Regarding pregnancy and medication, I too have lupus nephritis and am also on Mycophenolic acid amongst others. I have always been advised that Mycophenolic acid is harmful during pregnancy and therefore, would need to be off them for between 6-12 months before trying. Very frustrating but better to be safe.

I wish you all the best.

Roarah profile image

Because of your history of miscarriage, you may want to ask about running a full APS panel. If they return positive twice with at least 12 weeks between testing discuss lovenox usage during pregnancy.

As to pregnancy and flares it can seem to go either way. Many improve during pregnancy while others seem to flare.

You are still young so you have time to make sure your body has properly healed from your recent flare. Good luck!


November90 profile image
November90 in reply to Roarah

Thank you, that's really helpful and I will ask!

It was actually the consultant who brought this up at my last appointment (he asked if we were thinking about starting a family and I said yes, but probably not immediately in the circumstances and he said he would advise to wait a while to get everything stabilised first, which seems very sensible). I don't mind waiting, but I always feel better about having a vague plan!

I think they did do the APS panel and it was negative - but if I remember correctly, the consultant did suggest that this one was worth repeating because of my miscarriage.

At the time I thought it was just one of those things - and I suppose it may still have been. I was quite down about it because it was so near to the 12 weeks and we had been planning to tell people the next weekend. I was just so glad that we hadn't because I don't think I could have dealt with all the sympathy!

Roarah profile image
Roarah in reply to November90

Hugs to you. I am sorry about your loss. Xo

November90 profile image
November90 in reply to Roarah

Thank you - I'm ok about it now, but it was difficult at the time! Xx

Wendy39 profile image

Hello November90

I think you are being very sensible to plan like this and get ready for this discussion.

I recently attended the Graham Hughes International Charity patient day in London, where there were talks on Lupus, Hughes/APS and Sjogren's. There was actually a talk on pregnancy with lupus/hughes.

Hughes Syndrome or APS or sometimes called "Sticky Blood" is an auto-immune illness that can cause miscarriage, thrombosis, strokes and heart attacks.

Have you ever been tested for this?

Like someone says above many drugs cannot be taken during pregnancy as they are dangerous for the unborn baby. I think MMF - Mycophenolate Mofetil is one of them. Methotrexate is too.

You can take Hydroxychloroquine in pregnancy though.

If your kidney function is not quite stable yet and you need to keep taking your immune suppressant medication, it may not be advised to try for a baby just yet.

However, years ago many woman were told they shouldn't have babies with these illnesses, but that has changed completely, thanks to research by Professor Hughes etc and now many women are able to give birth to healthy babies. You may just need closer monitoring.

But I am no expert. And every lupus patient is different. I am just relaying what I have heard.

You need to compile a list of questions for your Doctor and make sure you get to ask them all and that you understand the answers s/he gives.

Ask if they run a multi-disciplinary clinic for pregnant lupus patients, with Rheumatology and Obs/Gynae in attendance as well.

Ask how often you would be monitored during pregnancy etc.

LUPUS UK also have a leaflet on Lupus and Pregnancy, here's the link.

I hope I have helped a little. Will you let us know how the appointment goes?

My very best wishes


November90 profile image
November90 in reply to Wendy39

I will do, yes! Thank you for all the information and for the link, it is really helpful.

Regarding APS, I had to check, but I did have the test and it was negative. If I remember correctly, the consultant suggested that it might be worth repeating at the time of the next appointment.

I had blood tests today for kidney function, so fingers crossed they'll come back ok!

Wendy39 profile image
Wendy39 in reply to November90

No problem, I am glad I could help. I have everything crossed for you.

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