Pregnancy with brittle asthma and on Xolair.

So, I am 19 years old and have brittle asthma, and I am on daily steroids & Xolair injections (375mg every two weeks) to control my asthma (as well as your normal Ventolin, Symbicort, blah blah blah) and I have recently found out I am pregnant. (Yes I am young, please do not judge me for this.)

I've been in a dilemma of whether to keep the baby or not. My boyfriend would really like me to keep it, but he said all in all, it is my choice on what to do.

Obviously the main concern is my health. Before I started Xolair I was having attacks 2-3 times a week and being admitted into hospital. Since Xolair I have had no attacks, but my specialist thinks that if I was to become pregnant I shouldn't continue my injections as there hasn't been enough research been put into Xolair whilst pregnant... but again it's down to my choice.. (I haven't seen my specialist yet, but I get to see him on Friday). But then again, I asked my boyfriend ""If I were to keep it"" would he rather I stayed on the injections and risk the chances of the baby being harmed, or to come off to make sure everything is safe, yet risk my health. Both him and I agreed I'd rather risk my health than the baby risk it's health for myself... but I just don't know what to do.

Has anybody had experience in being pregnant and coming off of Xolair? -Also, what's not beneficial is the fact I am unable to work due to my health, so I'm on ESA (sick pay pretty much, but I have been on this for two years) but obviously this changes when you're pregnant, but afterwards if I am still unable to work, and I move in with my boyfriend I get taken off of my ESA because he works over 24 hours a week. Is there anything else I could do so I would be more financially stable without risking my health?

Anyway, I just want people to tell me what they would do in my situation, and what there experiences are in this sort of situation. Any advice would be greatly appreciated. Thank you.

6 Replies

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  • Hi georgiampark. It sounds as though you have a lot of tough decisions to make. I feel for you. I'm afraid I can't really help with the medication or the benefits, but I thought I'd offer a little advice: try to break it down into smaller decisions- looking at the big picture is really overwhelming. I think first of all you should decide whether you'd like to keep the baby. If the answer is yes, then a long chat with your consultant will be needed to talk about medication and lastly find out about benefits. There is loads of help out there for parents - you could try going to your nearest citizen's advice bureau as a starting point. I'm a bit out of the loop now, as my son is now 6, and benefits have changed a lot in recent years, but I'd imagine there is something like that out there for you. Good luck and I hope you can keep healthy.

  • Hello Aylab, thank you for responding.

    I have come to the decision that I will in fact keep the baby, and my Xolair injections have been stopped as of the time being. I see two Specialists, one in Leicester and one in Kettering. They both say different things. One says that I should say on Xolair for the first few months, but the other says to come off immediately as there hasn't been enough research put into it. I have a meeting with the one in Kettering on Friday, but I think I'll have to phone my consultant from Leicester to confirm what they think is best too.

    I have been to Citizens Advice Bureau, and they told me I would be entitled to Child Benifits and so on, but I still don't think me and my partner will have enough to afford a home & child on his wage and that. If I move out with him while being on ESA I will be taken off of it because he works more than 24 hours a week (but he doesn't even earn that much considering he does quite a lot of hours)... and I am not entitled to work due to my health. Citizens Advice couldn't really come up with a solution for me. They told me to apply for PIP because DLA has changed to that now, but they have strict standards, and all together I'm not eligible, and they couldn't come up with any other form of solution to what I would be entitled for. My only solution seems to be going onto Job Seekers and finding a job.... Even though it'd be risking my health and against Doctors wishes, as well as nearly impossible for me to get employed as I am back and forth to hospital every fortnight, along with my random appointments here and there. It also doesn't help that if I was to get a job, it'd need to be suitable towards my health, as I am allergic to a lot, such as cleaning products, fur dander, plants, certain types of sprays, dust, and so on. The employer always seems to be worried I'll be ""unfit"" to work again because I have been out of work for such a long time, and they'd rather take the easy option of hiring somebody they could rely on all the time than giving someone like myself a chance to prove I am reliable and that my health is getting better. It's such a complicated situation and it often brings me down, because I hate not being able to work. I would happily have a full time job anywhere, but like I said, it has to be beneficial to my health, and the employer would need to take a chance on me rather than going for the easier option. People say that Employers aren't discriminating... but I find that quite the opposite. Before I fell really ill with my asthma I had one interview (my first ever one) and I pulled 2 jobs out of that.. Then I became of ill health. Now if I even apply for a job or get an interview (I have been looking because I'd rather work now and take the risk of being slightly ill than sitting around all day feeling useless for the third year in a row) They ask the same questions:

    ""Why can't you work every other Friday morning?""

    ""Will you be able to keep up with the pace""

    ""Are you sure you'll be able to handle it, as you have been out of work for such a long time"" ect.

    The only reason I am not employable is my health. It's becoming such a dilemma, and it really upsets me because I do feel like I'm being discriminated because I have been terribly ill for two years. Heck I even have a doctors note saying I haven't had an attack since being on certain medication, and it is still not good enough because they don't like the fact I'm not 100% reliable unlike others.

    Sorry about the rant, I think I needed that out of my system, because I literally have tried to think of everything, I've tried just getting a job to come off my benefit for being sick, and just risking my health to live a normal life.

    Anyway, thank you again for replying.. Sorry if this takes up so much time to read.

  • Hello again. I'm glad you decided to keep the baby :) It did sound as though that's what you wanted to do.

    Having your consultants saying different things is confusing and frustrating. I wonder why one of them is saying to stay on the xolair for the first 3 months. This is the most crucial time in the pregnancy when all the organs are being formed. After that, all the baby does is grow (more or less).

    I'm sorry to hear that the benefit situation is not straight forward. I do agree that it would be hard for you to find a job whilst pregnant and considering your health concerns. I think, as politically incorrect as it may be, if an employer was faced with two good applicants, one of which was pregnant and suffered from a chronic illness and the other not pregnant and healthy... well, you know where I'm going with this. So yes, I do feel there should be more in terms of benefits for you. I hope you find a good workable solution.

  • I'm not particularly up to date or knowledgeable about benefits but i do have a little experience, albeit 4 years ago. My partner was on DLA for a while and at the time I was working 40+ hours a week, but as I was on the minimum wage my total wage was below a certain point so I was entitled to income support. I was also caring for him, but didn't enquire about carers allowance/support although I believe I could have been entitled to this too. I found the most useful and helpful place to get the correct information and support from was the job center. They told me about all the benefits that I was entitled to and even offered to fill in the forms for me.

    I hope you find a way to alleviate the financial worry, but most of all I hope that coming off the xolair doesn't adversely affect your health or your baby.

  • Thank you both. Me and my partner are really looking forwards to having our child.. It just seems to be me panicking over money to financially support our child and give them the best life I can, and worrying about my health. I'm starting to calm down about the money though, as both my family and my partners family have said they will do everything they can to help out, as it isn't my fault that I am unable to work and so on. I hate relying on people, but that seem's like the only option I have to giving my child a decent life. My health on the other hand, after stopping Xolair, has slowly been getting worse. I have started having to use my Ventolin more often, along with my Symbicort (SMART method), so I think I'll be upping the steroids soon. Does anybody know if there are side effects to taking steroids whilst being pregnant. I really don't want to risk the health of my baby. I'm trying to do everything I physically can to keep this baby healthy!

    Thank you for all the reply's though, I really appreciate it.

  • You sound like you've had to make some really tricky decisions and have really given it a lot of thought.

    Just a thought about the work situation. Is there any way you could (eventually) train to do a job where you work from home? I know someone who has multiple physical health problems who is a computer programmer (or something like that) and works from home. He manages his own time and on days where he is less well he works reduced hours. It might make your situation easier in the long term although I know it isn't a short term solution. There are lots of internet based jobs you can do from home and you could train from home too.

    Under the Disability Discrimination Act your employer has to make reasonable adjustments to help you stay in employment. So things like reduced hours, extended 'triggers' for sickness policies etc. As long as you are up front with them when you apply they can't discriminate against you because of your health.

    I don't know if they have them in your area, but a lot of GP surgeries either have an occupational health advisor or can refer you to one. They could advise you on your options for training.

    Maybe have a chat with your GP or one of your consultants about the steriods and pregnancy. I think I've heard that the risk to your baby if you have a severe asthma attack is greater than the risk of taking steroids - so it is weighing up which is the least harmful choice.

    Best of luck. The main thing is to take care of yourself and prioritise your own wellbeing. Take care.

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