[helen o halloran]

hi guys
want to get pregnant saw a high risk gynie few months ago she gave me go ahead,but was feeling well at the time now my blood count very low and feeling tired and run down wondering should i keep trying,just feel like there will always something stopping me and i should continue trying leave it in gods hands.also wondering about pregnancy and immurne i am on 100mg how safe is it.
talk soon
helen

 

[Katharine]

Hi Helen,

I'm afraid I don't know very much about this as I had both my children pre-diagnosis. However, from what I can glean from the internet doctors would usually prefer that you NOT be taking imuran if planning a family. There is one exception to that and that is if they believe that the risks the mother would incur from not taking it would be too great (I presume in the context of an unplanned pregnancy).

Plaquenil, on the other hand, is considered safe during pregnancy and many people here have managed to "get around" these sorts of problems with support from a good ob gyne working hand in hand with their rheumy.

There may be a way to take something that would replace the imuran temporarily if you were planning a family.

All that said, the ideal situation is to be doing "well" for a good period of time before wanting to get pregnant.

I think this really highlights what has been said in other posts. You really need the support and guidance of a GOOD rheumatologist. It doesn't sound as if your general care is being properly coordinated at all.

Hopefully someone more experienced will be along soon with more cocrete answers.

Katharine

 

[cath]

Hi Helen,

The experts say the ideal is if you can concieve when in remission, and on as few drugs as possible.

Hoowever for many of us, that is wishful thinking and not achievable. It is something you need to have a frank discussion with your obstetrician an rheumatologist about.

Immuran is officially a category D\drug which means it is not reccomended. There are a few studies showing increased miscarriages and birth defects on mice given high doses of immuran. However, there are a lot of women who have taken immuran during pregnancy because it was judged to be necessary for their disease control. Not just lupus patients, but also those with crohns or a transplanted organ take immuran. So there are lots of case histories for its use in humans during pregnancy. The most recent data we have suggests that it is actually safe and does not cause higher rates of birth defects in humans. The miscarrage rate is a bit higher than for 'normal' populations, but it is difficult to know if this is from the immuran or the underlying disease it is treating.

Personally I take 100mg of immuran with the blessing of both rheumatologist and gynacologist and will be staying on this if/when I'm next pregnant.

As Katharine said, plaquenil is also safe, and prednisolone is also an option. It is important to be as healthy as possible during pregnancy, so if meds are needed to achieve that, they are the lesser risk in comparisson to uncontrolled lupus.

Hope that helps!

X C X

 

[cmfinnis]

hi Helen,

I'm sorry that you are feeling so tired at the moment and that your blood counts are also low. I am in a very similar situation to you and went to the St Thomas's specialist pregnancy clinic a while ago to discuss the pros and cons of both lupus and its treatment in pregnancy.

Obviously everyone as we all know is different with their own particular strain of lupus and so all I can do here is tell you my own personal experience.

When I first went to the clinic I was on prednisolone, MMF, and warfarin. I was told that the prednisolone was fine and that can be continued throughout pregnancy. However I was informed I would have to stop the MMF before becoming pregnant and they changed me onto azathioprine (imuran). I was told that azathioprine is very safe in pregnancy and if you have severe lupus, as I do, then this is a safer option than not taking it. This does not mean that there are no risks with azathioprine, however they are much lower than with other immunosuppressants.

As for the warfarin this is most definitely not safe for use in pregnancy. However you do not need to change it before pregnancy. However as soon as you get a positive test you have to change onto heparin and aspirin.

I hope this all makes sense and has helped. I know that it is a very difficult decision to make and that thinking about it can cause a huge mix of emotions. I do both hope that we are successful in our desire to become mothers, safely and healthily, in the future.

take care,
Cathy

 

[leahb133]

I am currently 5 months pregnant and I am on Imuran. They put me on it while I was pregnant to control the lupus. I dont know if its working as of yet.. I will find out on Monday.

 

[stef]

Hi there
My beautiful son was born in April. I was medication free for 3 months before concieving and feeling great. However, 2 months into the pregnancy I started to feel achey and by the 3rd month could hardly move! I started taking azothioprine and prednisolone and by the 6th months was feeling much much better. I was induced at 38 weeks and had really good labour. My son weighed 7lb and suffered no side effedts what-so-ever from the meds I was taking. The only problem was that I was unable to breast feed as the meds would transfer to the baby.
I wish you all the luck in the world