pregnant

[gillian26]

I am 11 weeks pregnant and have lupus, partially blind due to lupus, became very ill hardly able to breath, couldn't walk or climb stairs, have uncontrollable seizures, memory loss and lose feeling in hands, now feeling better since steriods increased, I have a child of three who was premature and was in hospital constantly through pregnancy and very ill after birth but was not diagnosed with lupus at this time only diagnosed when started losing sight last year, I have felt for years that doctors believed everything was in my head until I started losing sight last year, referred to opthomologists who I have told what symptoms I have, everything has just got worse, only when I found out I was pregnant I have been referred to the renal department which I go to on Thursday, doctors are pushing me to abort child due to health risks to me, but I just can't do this, doctors keep on telling me that I should be thankful that I have one child, I feel that the baby has survived so far and I couldn't abort as I would never forgive myself, is there anyone else out there in same situation

[chlomalee]

Hi Gillian,

I can't imagine what you are going through at the moment,
I assume that you have kidney involvement too,
Maybe they might be able to give you some advice when you see them on thursday,
I'm glad your feeling a bit better now that you are on the higher dose of steroid's,
Let us know how you get on at clinic,
Sorry I've not been able to give you any answer's,
Take care,
Marie.

[cath]

style_emoticons/<#EMO_DIR#>/foryou.gif Hi Gillian,

Nice to meet you and welcome to the forum.

I'm sorry to hear that lupus is affecting you so badly. Do you know exactly how it has caused your vision loss? Is it a part of your other CNS issues or something else?

In regards to your chances of a succesful pregnancy and your own health risks, you really need expert doctors working with you and good advice. Are you under the care of a obstetrician who specialises in high risk cases?

Where do you live? Some academic hospitals have specialist units where they will have experience with women with SLE and serious medical problems. For example St thomas's in London UK has a special pregnancy unit for their Lupus and APS women.

You need to have an idea of where you are at medically. Do you know what antibodies you have? In pregnancy it is especially important to know if you are Ro positive (SSA, SSB), and if you have cardiolipin antibodies, a false positive syphylis test or the lupus anticoagulant. It is also importent to know how your renal function is. Pregnancy puts a lot of strain on the kidneys, and renal involvement will place you at higher risk for other complications such as PET/pre-eclampsia in pregnancy.

Women with organ involvement, and expecially renal impairment have higher risks that the pregnancy will fail or that they will have significant problems in pregnancy. Discuss with your doctors the risks. Ask them exactly why they are suggesting you terminate and explain why you don't want to. It is important that you develop an open and trusting relationship with your doctors and that you can all work together as a team for your best care and health. If you feel that you can't trust or work with them, think whether a different doctor would be better for you. Whilst recent advances in management mean that succes rates for pregnancies in women with SLE is much better than it used to be, the risks are still real. Do you remember why the doctors said they wanted you to terminate? I know it must be an awful decision to make, but if their arguments are very strong, you do need to listen to them and think very hard about the possible consequences of going against their advice. In the end though, this is a decision only you and your partner can make.

If we can help in any way at all, just ask.

Let us know how you are getting on...

X C X

[Maia]

I haven't been in your position, and I just wanted to offer a hug **hug**

Do what feels right to you, do as much research as you can into your own condition. The doctors
have to respect your decision, and work with you.

I have read research recently that says pregnancy does not worsen kidney issues...

gotta run, baby is up!

[datasec]

Hi<

I am 12 Weeks pregnant, 34 years old, I just became extremely during my weeks. I have had problems with Pluerisy and Heart Pain, today my left wrist joint extending into my hand became painful and is hard to use, I was just diagnosed last week and I have not been put on medication yet. Can you or anybody else comment on painful symptoms related to Lupus and pregnancy?


I am 11 weeks pregnant and have lupus, partially blind due to lupus, became very ill hardly able to breath, couldn't walk or climb stairs, have uncontrollable seizures, memory loss and lose feeling in hands, now feeling better since steriods increased, I have a child of three who was premature and was in hospital constantly through pregnancy and very ill after birth but was not diagnosed with lupus at this time only diagnosed when started losing sight last year, I have felt for years that doctors believed everything was in my head until I started losing sight last year, referred to opthomologists who I have told what symptoms I have, everything has just got worse, only when I found out I was pregnant I have been referred to the renal department which I go to on Thursday, doctors are pushing me to abort child due to health risks to me, but I just can't do this, doctors keep on telling me that I should be thankful that I have one child, I feel that the baby has survived so far and I couldn't abort as I would never forgive myself, is there anyone else out there in same situation