having kids?

hey i was diagnosed with lupus 5 years ago.. been coping ok most of the time.. but was wondering how people coped with having children? if it was easy to have children? and how it was for their partner? was it easy for them to accept this and fact it will never go and might get worse?

sorry i know there is a lot of questions there but i really have no idea and dont know if its fair on my partner?

thanks :)

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  • Hello,

    I asked many of the same questions and have now come to the realisation that I will never have kids. I honestly don't think I could cope with a child now and that is heartbreaking. I also couldn't see me being able to carry a child while on my cocktail of meds. It took me ages to be 'ok' with this but it still hurts. Saying all that though, each person's circumstances are totally different and with the right support it is totally possible! If your partner accepts it and wants to have children with you and you feel like you could cope then I would say take the opportunity. You deserve to have that chance xx

  • It's made me feel really sad that these are things that both of you are facing and deciding :(

    I have 2 children, and although looking back, I'm sure I already had SLE while I was carrying them, I didn't know it at the time, which meant that I wasn't on any meds...so I didn't have that to worry about.

    But I did already have lymphoedema, and apart from liver problems during pregnancy, I actually was pretty good both times. It was like having a different body for a while...it didn't last after unfortunately lol

    But I obviously considered if I could cope, as although I didn't know what it was, I knew I wasn't 100% well and the lymphoedema was out of control at the time.

    But every new mum feels like that to a certain extent, its a big thing!

    I also considered the reality of passing on my conditions to baby, but anyone can do that too...its only a risk and decided that even with problems, most people would still chose to be here than never born because of them.

    As for day to day now, my son is now 11, with high functioning ASD and other problems. So is the size of a 15 yr old, with the emotional age of a 4 yr old....but honestly, its fine, he's hard work, but I wouldn't change him.

    Yes, it can all be hard going and juggling everything can be very tiring, but it is manageable.

    I might not be the 'perfect earth mother' often I forget to do things, often I can't do things, but I do an ok job, kids are both grade A students, both well adjusted and I'm often complimented on how polite and nice they are :)

    I think if one thing is true, a baby/child adjusts and blends to tune in with their mother, what is normal for them, the more a child is pampered, the more they will expect to be done for them, although both of mine do play up sometimes when they know I don't have the energy to shout lol

    But if you did go ahead with starting a family, I'm sure your child would fit just fine into your jigsaw of life xx

  • I was diagnosed with lupus exactly 8yrs ago and had my two children living with this condition.The first four years was very difficult because these were the years I had my children,I went through a lot of joint pains,swelling (flares) with my first child .After her birth was placed in addition to my predinisolone on hydroxychloroquinesulphate because at very high dose of predinisolone I was continuously unwell,bruising,nose bleeds,dry eyes, and very severe joint pains and swelling.Picking my child was a nightmare but I had to. I was very skeptical at this time taking up this new drug because on the one hand I was breast feeding at that time.Well started it ,my eyes needed to be tested within 6months of taking it a.Then I fell pregnant for second child .After his birth was also in the same massive pain a new drug was suggested ,also as a way of taking me off predinisolone. I reacted to this drug then but I'm still on it.

    Daily life with children and husband is not easy but coping, sometimes my health puts a strain on my family as ....,some days I'm really tired.The thing is you most of the time look well but your body is really not it........It took my husband time to readjust to this but we are both coping well now when I'm really down he supports.

    Well I guess we make the best of the times we feel really well and when we are not the family copes with what they've got at the moment.If you are planning to start a family,the most important aspects of coping is understanding, support and a positive attitude.All the best

  • Everybody is going to be different and I think you need to bear this in mind when you read all the answers to your question. I think it's important to arm yourself with all the knowledge you can before you decide what to do and seek help from your doctors too as they will be able to advise with the specifics of your own health situation in mind.

    I've had some form of 'lupus-like-syndrome' since I was 16 and was completely unaware of any issues this might cause when my husband and I decided to have children when I was in my early 30s. I didn't have any particular problems having my first child (although he was born slightly early as I developed pre-eclampsia - I have no idea if this is something more prevalent in lupies). However, when we tried to have another child a couple of years later, I had two miscarriages followed by secondary infertility. I was told that because of my anti-body status I was actually likely to be a recurrent miscarrier if and when I could get pregnant again in the future. I was referred to The Miscarriage Clinic at St Mary's Hospital at Paddington (which is where I actually found out that what I'd got was actually lupus). In addition to all the other antibodies, it turned out that I was also anti-Ro positive which has implications for having children as it can cause foetal heartblock, stillbirths and neo-natal lupus. I must again stress that this was the picture for me and each person will be different.

    I became absolutely obsessive about having another child and we had a lot of help from St Mary's (lovely docs there!) as well as from the JRH in Oxford where we started down the path of IVF ICSII treatment. Amazingly just as we'd decided to give this up, I discovered that I was pregnant naturally - I did have a miscarriage scare at 9 weeks but luckily my daughter hung on in there and was born thankfully with no problems that we are aware of.

    If I'd heard of all the medical horror stories before we started a family, perhaps we'd have never tried either and we would have missed out on something wonderful. I think you need to find out as much as you can about what YOUR situation is and only then can you make the decision. When you are a parent, you just get on with it - it's never easy and having health problems is just another thing to add to the list but I think I would have resented my condition even more if I'd let it stand in the way of at least trying to have my own family. Remember to there are other ways of becoming a family: we were going to adopt from overseas when I found out I was expecting #2 or you can adopt from this country or there's surrogacy too. Lots and lots of things to consider. I hope that at least I've given you some food for thought.

  • Hi, I am 52 and I was only diagnosed 3yrs ago. I think tho I have had it for years. I had 3 miscarriages before I eventually had my daughter. Recurrent miscarriage is part of lupus. I also wasnt on any medication. My daughter is 30 now. It must be very hard for you to know what to do. You can only think it through and make the best decision for you.x

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