my boyfriend and i have been thinking alot recently about the future, and we both really want babies soon (ie in the next few years) but my lupus is really bad at the moment as some of you have read...needing dmards, pred, plaquenil and nsaids every day and not with huge success currently. so what happens if i can never get the lupus to go away? ive seen how much it flares up when i stopped methotrexate..how am i ever going to get off of these things for long enough and be healthy enough? has anyone got pregnant even though their lupus is active and how did things go? thanks for the advice! xxxxxxx
what if remission doesnt happen?
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Hello there Mooks,
I'm afraid I really can't answer on the active lupus thing and being pregnant as I was dx after I had my kids but just wanted to give my view on this.
Wanting to have kids can be a real adventure no matter what we might or might not have wrong with us.
So many "healthy" people will just take it for granted that they'll have kids when they decide to but then, when they try, it doesn't happen. I have seen couples torture themselves with their desire for children and others work through it and decide that, at the end of the day, the most important thing to them is "them" and if they can't have children that's fine as they are still together and still love each other.
What I'm trying to say here is that some people have been destroyed by an all consuming obsession to have children. I can understand the strong desire to have children (of course) but think that it is very important, although you may be planning for that, not to lose sight of every day, just taking things from day to day and being happy in the present...
Not sure if you're following me here. Not sure if I'm following myself...but anyway, that's how I see it.
I'll leave the brainier and more techy answers up to those who do that better. Obviously, I hope that this will all be irrelevant and that you will go into a nice long remission, have loads of kids and live happily ever after
hugs :hug:
Katharine
I'm afraid I really can't answer on the active lupus thing and being pregnant as I was dx after I had my kids but just wanted to give my view on this.
Wanting to have kids can be a real adventure no matter what we might or might not have wrong with us.
So many "healthy" people will just take it for granted that they'll have kids when they decide to but then, when they try, it doesn't happen. I have seen couples torture themselves with their desire for children and others work through it and decide that, at the end of the day, the most important thing to them is "them" and if they can't have children that's fine as they are still together and still love each other.
What I'm trying to say here is that some people have been destroyed by an all consuming obsession to have children. I can understand the strong desire to have children (of course) but think that it is very important, although you may be planning for that, not to lose sight of every day, just taking things from day to day and being happy in the present...
Not sure if you're following me here. Not sure if I'm following myself...but anyway, that's how I see it.
I'll leave the brainier and more techy answers up to those who do that better. Obviously, I hope that this will all be irrelevant and that you will go into a nice long remission, have loads of kids and live happily ever after
hugs :hug:
Katharine
The recommendation to be in remission is the "ideal" situation. It is definitely desirable to attain the 6 months remission before conception with only needing pregnancy safe meds to get you by (and no major organ involvement either - especially the kidneys). However, the 6 months remission rule is not an absolute necessity if you have non-organ involving lupus and are reasonably stable on the safe for pregnancy meds.
Of course talk to your doctor, talk to a high risk OB-gyn if possible, so they can look at your particular situation and discuss the what-ifs with them. It's impossible to truly advise you on this... so remember I'm only giving my opinion, my doctor's opinion in my particular case, and my experience!
I had about 4 months of feeling "pretty good", 3 of them with no prednisone, when I got pregnant. I wasn't in complete remission. Still had some fatigue, some joint pain, but it was very manageable to work full time and take care of my home duties. I felt I was well enough to be able to care for a young child even if I never got any better than that so we went for it. That was my thought process and my rheumy agreed with me that a pregnancy was pretty safe for me given I only needed Plaquenil, low dose aspirin, and occasional prednisone & I had no kidney involvement in particular.
The high risk ob-gyn was a little more leery, even in my case. I think they are paid to be that way though given the huge malpractice risks they take on these days!
Good luck to you.
Of course talk to your doctor, talk to a high risk OB-gyn if possible, so they can look at your particular situation and discuss the what-ifs with them. It's impossible to truly advise you on this... so remember I'm only giving my opinion, my doctor's opinion in my particular case, and my experience!
I had about 4 months of feeling "pretty good", 3 of them with no prednisone, when I got pregnant. I wasn't in complete remission. Still had some fatigue, some joint pain, but it was very manageable to work full time and take care of my home duties. I felt I was well enough to be able to care for a young child even if I never got any better than that so we went for it. That was my thought process and my rheumy agreed with me that a pregnancy was pretty safe for me given I only needed Plaquenil, low dose aspirin, and occasional prednisone & I had no kidney involvement in particular.
The high risk ob-gyn was a little more leery, even in my case. I think they are paid to be that way though given the huge malpractice risks they take on these days!
Good luck to you.
Hi maia
We are looking to get pregnant and it is a bit daunting. I have a 2.5 yr old who I cherish but I would love to give her a sibling. However my lupus is quite flared and has been since I had her and I am allergic to azathioprine and plaquenil. I take 7.5mg of pred daily plus aspirin and amitrypline, folic acid, calcium etc.
I was very honest with my rhuemy about wanting more kids and he feels that it's now or never for us as the next lot of meds could take away my fertility :-( With that in mind we went yesterday to see a specialist nurse (who wasn't that keen) and we are seeing a specialist obs at the end of the month.
Having kids is the most exciting wonderful thing ever - and the hardest, even without an illness. It's a matter of weighing up the risks to both you and the baby. But it is REALLY important to PLAN a pregnancy with your rhuemy onboard to make sure that all your pills are ok with it.
Good luck with it all and I have everything crossed for you!!
We are looking to get pregnant and it is a bit daunting. I have a 2.5 yr old who I cherish but I would love to give her a sibling. However my lupus is quite flared and has been since I had her and I am allergic to azathioprine and plaquenil. I take 7.5mg of pred daily plus aspirin and amitrypline, folic acid, calcium etc.
I was very honest with my rhuemy about wanting more kids and he feels that it's now or never for us as the next lot of meds could take away my fertility :-( With that in mind we went yesterday to see a specialist nurse (who wasn't that keen) and we are seeing a specialist obs at the end of the month.
Having kids is the most exciting wonderful thing ever - and the hardest, even without an illness. It's a matter of weighing up the risks to both you and the baby. But it is REALLY important to PLAN a pregnancy with your rhuemy onboard to make sure that all your pills are ok with it.
Good luck with it all and I have everything crossed for you!!
Mooks i am in the same boat as you. My husband and i want children and NOW. Last october i had a flare and had almost complete kidney failure. Since then things have gotten better but it seems i can only be on cellcept or cytoxan for my lupus to be in control and i cant be on either while pregnant. My doctors are giving me birth control shots so i dont get pregnant right now. They want me to wait another 2 years. Right now my lupus is in control but my kidneys are still not strong enough. Whenever i talk to them though they say once the lupus has been in control for a year or two i can start trying. They never say anything about my kidneys. I wish i was dx's after giving birth and now i feel like i will never get that chance. I want babies. I hope you get your chance. They told me it would be a good idea to see a obgyn just so they could explain things to me when i do decide to get pregnant and what precations to take. You will have a high risk pregnancy. I hope it all works out!
There are always other options - like adoption, foster children, surrogacy (using your eggs and husband's sperm), etc. And I know quite a few people that have lived a very full & happy life without children and get a lot of joy out of being just aunts and uncles or mommy's super cool and fun friend!
Hi Mooks and Alisiajo,
I hope it is OK with both of you to adress this to both of you? I thought about splitting it off into two threads, one for each, but your concerns are pretty simmilar, and also what I want to say in response....so:wink2:.
The desire or drive to have children is something that for most women (and to a lesser extent men) is very strong and persistent. My cynical view is that it is a trick of genetics and out hormones to keep the species going, but why doesn't matter really when it is something you really want.
The trouble is you can't get kids at the supermarket, or order them online, probably just as well, but it remains one of the things we just can't plan with certainty that it will happen. The reason it might not happen might be lupus related, or might be from other problems.
Statistically we know that there are lots of things that can be done now, incomparison to 40 years ago. Good medication can get the disease more stable, APS can be treated, IVF can help in cases of infertility, and scans can identify and 'rescue' unborn babies in distress. Still, all these things don't change the chances from 0 to 100%. For example with APS treatment the chance increases from 10 to 70%, but that is still 30% failure, and if you fall in that 30%, the statistics don't matter, because to you it is a tragedy.
So, how do you live life, plan, hope?
I think you have to find a way to hold on to the hope of what you want, and to learn to want what you get. That is especially hard when you face disappointment, but you really do have to feel that your life as it currently really is is a life worth living, even if that life is currently childless and maybe pernamently childless.
I'm not saying that that is easy - I struggle with this issue too pretty much pernamently, but I firmly believe it is important, not just for you, but for your relationship with partner and friends, and also for any potential child. No child deserves to be born into a situation where they are not 'wanted' but 'needed'. So, however you do it, you need to come to a point where you can honestly say 'I'd dearly love to have a child, but if it never happens we will cope, and we can still be happy'.
Then you do everything you can do be as healthy as possible, and lower your stress as much as you can, and take the necessary steps towards doing what you want to....
All the best,
X C X
I hope it is OK with both of you to adress this to both of you? I thought about splitting it off into two threads, one for each, but your concerns are pretty simmilar, and also what I want to say in response....so:wink2:.
The desire or drive to have children is something that for most women (and to a lesser extent men) is very strong and persistent. My cynical view is that it is a trick of genetics and out hormones to keep the species going, but why doesn't matter really when it is something you really want.
The trouble is you can't get kids at the supermarket, or order them online
, probably just as well, but it remains one of the things we just can't plan with certainty that it will happen. The reason it might not happen might be lupus related, or might be from other problems.Statistically we know that there are lots of things that can be done now, incomparison to 40 years ago. Good medication can get the disease more stable, APS can be treated, IVF can help in cases of infertility, and scans can identify and 'rescue' unborn babies in distress. Still, all these things don't change the chances from 0 to 100%. For example with APS treatment the chance increases from 10 to 70%, but that is still 30% failure, and if you fall in that 30%, the statistics don't matter, because to you it is a tragedy.
So, how do you live life, plan, hope?
I think you have to find a way to hold on to the hope of what you want, and to learn to want what you get. That is especially hard when you face disappointment, but you really do have to feel that your life as it currently really is is a life worth living, even if that life is currently childless and maybe pernamently childless.
I'm not saying that that is easy - I struggle with this issue too pretty much pernamently, but I firmly believe it is important, not just for you, but for your relationship with partner and friends, and also for any potential child. No child deserves to be born into a situation where they are not 'wanted' but 'needed'. So, however you do it, you need to come to a point where you can honestly say 'I'd dearly love to have a child, but if it never happens we will cope, and we can still be happy'.
Then you do everything you can do be as healthy as possible, and lower your stress as much as you can, and take the necessary steps towards doing what you want to....
All the best,
X C X
Hey Mooks, here's something that'll give you some hope.
I went to see my nurse the other day to get a flu jab (which never happened - see related thread )
Any hooo, whilst I was there she started talking to me about my Lupus.
She went on to tell me about her friend who was dx'd with Lupus when she was 31.
Moving on 12 years, this woman now has 3 healthy boys.
She had to wait till the disease was under control, after which she came off the plaquenil and went on to prednisolone whilst pregnant.
May I also add, speaking personally, and from what I have seen of my uncles and aunts 2 kids - who are both adopted - a baby, whether from your own body and soul, or baby in need of a mother, can be equally yours.
Don't give up hope
I went to see my nurse the other day to get a flu jab (which never happened - see related thread
)Any hooo, whilst I was there she started talking to me about my Lupus.
She went on to tell me about her friend who was dx'd with Lupus when she was 31.
Moving on 12 years, this woman now has 3 healthy boys.
She had to wait till the disease was under control, after which she came off the plaquenil and went on to prednisolone whilst pregnant.
May I also add, speaking personally, and from what I have seen of my uncles and aunts 2 kids - who are both adopted - a baby, whether from your own body and soul, or baby in need of a mother, can be equally yours.
Don't give up hope
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