Pregnant on gilenya
Hi I am wondering could some one help me. I'm freaking out here. My period was late recently and I took a pregnancy test (actually took4) and it was positive. I was shocked (still am) cos my husband and I were not planning on having kids any time soon. I came off the pills a few months ago as I was having my hip replaced so we were using other precautions but obviously they haven't worked. Anyway since the result both my husband and I are worrying as I have been reading up on gilenya and pregnancy. I have been on gilenya since march '15. Please can someone give me advice. I am going to see my gp tomorrow and also contact my neurologist. But at this moment in time I'm freaking out as I have read all the literature on gilenya and pregnancy... Please help!!!
Dear @flan30 Unfortunately, I don't have experience in this exact field; although my pregnancy was completely unexpected (we were told to go for IVF if we wanted a child), I was not on medication for MS i.e. DMD. I wanted to say 'hello' and reply to your query as you don't have responses yet and must be totally confused as to what to do. A good question to ask your GP and neurologist is this: what would YOU do in MY situation? Then you might get a reasonable answer from them (can you see female GPs/Neurologists?). My friend also says, which is a great tip, if you don't have all your questions lined up, you might walk away thinking...damn, I meant to ask that and have lost my chance to do so. Get thinking about what you want to ask. Write your questions down and ask your husband to attend so he can ask questions and take notes too; I find I leave a consultation and can only remember half of it. I guess you need to know what the likelihood is for problems and what you want to do about it, and if there are time limits. We were given extra scans but I'm not sure if they spotted a problem would they have been able to do anything about it. You and your husband need to have an honest chat about what you two want to do and then have another chat after meeting the consultant. It is ultimately both you and your husbands decision. Best wishes to both of you, Lucyh xx
@flan30 , all the Disease Modifying Treatments (DMTs) come with risks and that's before we start considering making babies. Understandably, it would be immoral to trial these drugs on pregnant women and the manufacturers are always going to err on the side of caution. Any specific data can only be obtained by unplanned pregnancies. But, there are tales of successful pregnancies, which were conceived whilst taking Gilenya. So, now you need to follow the advice of your medical team. They'll look after you. Also, if you have an MS Nurse, then try and get hold of them first thing Monday. They are usually easier to get hold of than your Neuro. I should imagine that you've stopped taking the Gilenya. If not, I'd stop now. And, finally, congratulations to both of you. :wink: