Hi all, newly diagnosed with MS after having 2 episodes within the past 4 months. The doctor is keen to get me on medication as asap but at 32 with no children my husband and I are questioning the need of if we should start a family before I start anything or potentially limit my treatment options and try for a family in the future. I’m wondering what other people’s experience of this is. I’m even questioning whether I should even have. Hidden at this point due to the uncertainty of my health in the future. TIA
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if you were planning to have children then it would make sense to have a child(ren) as soon as possible - before starting on any treatments.
many women with m.s. feel well during pregnancy but are at risk of an attack in the 12 months period following the birth.
my advice - Go for it!
Hi, I’ve been diagnosed with MS for a while but am currently planning to start a family. I’m 31 and well still (MS wise). I had to come off my previous treatment last year as I was on Fingolimod and it is not safe for pregnancy. I have since started on another drug that is safe for pregnancy and we are trying to conceive at the moment. I think it depends on the activity of your ms at the moment, mine is fairly active when not on treatment so it made sense for me to continue a treatment that is safe for conception and pregnancy. If my ms was less active I probably would have tried to not take medication for a while whilst trying to conceive. I wish you good luck, here if you ever fancy a chat!
Hi
I wanted to ask what medication you are on at the moment. Because I’m planning on starting a family soon and also need to consider medication that is safe. Thanks
Hi Lab, I’ve been recommended Avonex, it’s apparently safe to take until conception. After doing lots of research it does seem to be the best option out of the lower efficacy drugs. I’m personally still waiting to start on any medication having being diagnosed at the start of lockdown and still wondering if I should delay until after I have a baby. Oh to have the power of hindsight!
Hi Carly
Im in the same situation as yourself, my consultant has recommended medication though I have decided to stay off any meds for now as I plan to start a family. I’ve been well for nearly a year now fingers crossed. I am generally well in myself.
I was taking copaxone and absolutely hated it, I don’t think I had the patience to stick with it and I hated the side effects. I hate injection form. I would prefer tablet form!
For now as I am well it’s regards to my MS I decided to lay off any medication. I’ve only ever tried copaxone and tried that for 5 weeks and gave up on it as the side effects were horrendous, the risks for me outweighed the benefits and so stopped. It caused lipoatrophy within 5 weeks of taking it! Thought I couldn’t carry on and it have a knock on effect on my self esteem.
Hi, I had planned to try for a baby medication free, however, after coming off my medication (Fingolimod tablet which had kept my ms at bay for almost 7 years), unfortunately after coming off it, I went straight in to my worst relapse yet. 6 months on and thankfully I have almost fully recovered from the relapse and ready to start trying to conceive. I have started on a drug called Tysabri and although not ideal to conceive on any drug, the ms team have reassured me that Tysabri is relatively safe for conception and they recommend me staying on it during pregnancy too, at a lower dose until the last trimester. After having a crazy last six months, I have come round to the idea of this plan being the best one for me, weighing up all the risks. The nurse said it’s important I’m well in order to take care of my future baby. I think my RRMS is fairly active. If it wasn’t so active I’d be inclined to try for a baby before starting any medication. Before I had the recent relapse my nurse had suggested that Copaxone and Plegridy are safe injectable medicines for pregnancy, but I think I’ve ended up on Tysabri because of the activity of my disease. We have to do what’s right for us as individuals. It is hard, especially when there’s little research re MS medications and pregnancy. I would ask the nurse and consultant what their recommendation is for you personally, as they will know more about your MS prognosis (from your symptoms and scans). Here if anyone fancies a chat. I’m hoping to meet/support women with MS who are at a similar stage in their life. It’s hard as most groups I have joined have either been for older women or people who have already had their children and moved on or younger generations. I wonder if it’s worth trying to see if MS society can create a Facebook or online peer support group just for people who are planning for pregnancy?! Sorry for the rant, I’ve felt quite alone in this journey so far!
Hi Lab,
That sounds awful and like you I would have been happier with treatment in tablet form. tbh I’m absolutely dreading starting any medication, just seems so bizarre to be feeling completely fine and then starting medication. I do hope I’m worrying about nothing and I’m one of the lucky ones but the anticipation is awful.
IRT starting a family, the timing couldn’t be worse in terms of a lot of other things, my house is a building site, we have no hot running water or heating and my husband is on a waiting list for spinal surgery - then theres covid too. I feel like this diagnosis has forced me to make a decision I wasn’t ready to make. Hopefully you’re ina better situation and wish you well in starting your family soon x
Hi ladies, just logged in to this new site and saw our thread from last year.
I hope you’re all keeping well?
I’m excited to tell you that I’m currently 28 weeks pregnant and expecting a baby girl this July!! I’m still taking Tysabri every 5 weeks (instead of every 4) until I’m 34 weeks pregnant, then plan to have a break as they say the drug has more chance of crossing the placenta in that last part of pregnancy. I’ve been advised to start back on Tysabri as soon as I can after the birth which I plan to. So far so good, I’ve remained well MS wise, hoping it continues. I hope you have been able to stay well ladies and make decisions that are right for you on this journey. There’s a couple of Facebook groups I’ve found which have been really helpful for further support and advice in this time, one called MuMS for people trying to conceive/planning families with ms and for people who have had children with ms. There’s also one for Tysabri and pregnancy.
Here if anyone fancies a chat xx
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Hello,
I have recently just started on Tysabri myself and have been trying for nearly 1 year now. @Katy_F do you have any other advice on this as I have seen mixed advice.
Lauren.