Last reply 1 year ago
Starting a family vs taking DM treatment

Hi all, I was diagnosed with relapsing remitting MS in 2015 after first experiencing symptoms in 2013. I’ve been well since then and went on to get married and have a baby. My son is now 12mo and I’ve just experienced a relapse – the biggest one I’ve ever had. I’m unable to control much of the left side of my body and am sad and scared.

My docs have been amazing and I’ve managed to see everyone I’ve needed to these last few days since the relapse happened. During my meeting with my consultant my husband and I were told I need to start tecfidera immediately and put away any plans of having more children. This is based on further activity in my brain shown in a recent MRI, the relapse I’m currently experiencing and the fact that he wants me to start DM treatment straight away and that means no trying for a baby.

I wanted to ask if there were any mums/parents out there who have been faced with similar issues? I’m in my mid-30s and whilst I’m not planning a baby straight away, I’d love to be able to give me son a sibling and feel like I’ve got to make a horrible choice between that and my health. Feeling sad and despair-y.

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stumbler
1 year ago

Hi @hackneyworkingmum and welcome.

This recent MS activity may well be a post-natal response as your hormones return to normal. Unfortunately, this can be normal.

It’s a tough call, asking you to choose a Disease Modifying Treatment (DMT), rather than completing your family. However, you should do your own research into DMTs, so that you can play an active role in these discussions with your Neuro, rather than passively accepting their offered option. There’s details here :- https://support.mstrust.org.uk/file/MSDecisionsWeb.pdf

Look specifically at Lemtrada. This may fit better with your family plans. It is infused on two occasions, a year apart. Over five days in year one and three days in year two and that’s it. It also only stays in your body for six weeks!


Anonymous
1 year ago

Hey @hackneyworkingmum

I am in my mid 30s too and my husband and I would like a baby. I delayed starting treatment as I was told the same as you that I couldn’t try for a baby while on treatment. But I ended up relapsing 3 times – one was major and I got double vision, struggled with balance and co- ordination, was all over the place mentally and really was thinking straight or being myself – I was a mess.

Anyway I saw my Neuro and was put on Tysabri – they are now happy for me to try for a baby but will have to stop treatment if I do fall pregnant.
So maybe that is an option for you too? I know it is so confusing and I don’t know why I couldn’t have started this sooner. So there are options so don’t despair or be sad. You have been blessed with on child and I am sure you will be able to try for another and get the treatment you need.

Feel free to message me if you need any more info on my situation.

Take Care
Avril


katy79
1 year ago

@hackneyworkingmum

I’m 37. I was diagnosed last year. I don’t have children – and hadn’t landed whether or not I wanted them when I was diagnosed. I’d only been with my boyfriend (now fiancé – Christmas Day engagement!) 3 years when I was diagnosed and whilst we’d talked round the subject, we hadn’t landed it for either if us.

I went for Lem on the basis that within 16 months of starting treatment (i.e. 4 months after round 2) I can conceive without needing to worry about staying on drugs for MS and impact on feotus (on top of risks of being an older first time mum) or coming off and facing a rebound relapse as a result. Obviously there is still always the risk of relapse – but hopefully a highly effective dmd like Lem gives you the best chance of reducing that risk.

So we’ve promised ourselves we’ll re-visit the conversation to see whether we actually want a baby in January 2018 – four months post round 2 and 4 months before we get married. I think the answer is probably no – but Lem gives me the best chance if we decide we do.

K xx

Ps – round 1 was easy peasy! No regrets so far – although early days as only 6 months post. Xxx


mermaidia11
1 year ago

As usual, stumbler is correct and helpful.
(this may get a little more unconventional – but as long (and it is long) as it gets you thinking outside of the box…)

In my humble opinion as a mother,don’t make any decision until you feel you can make an informed one, I summise also aka stumbler.

It’s an invidious position and as we know there are no easy answers to complex problems.
I was put in a similar position 14 years ago, with neurologists forcing beta interferon on me, regardless of the fact I was in my 20s and wanted to start a family. I decided to swerve the beta interferon and try for a baby. My mother and sister were alive then, so I was assured of some support; as well as my ex husband.
Having a little one was the greatest joy for me and she kept me fit, active and healthy.
I was always exhausted and jelly legged by the end of the day – but nothing worth having comes easy eh?
Then my mother became very sick and my marriage was going to the wall… Nevertheless by some miracle, I fell pregnant again. (Not intentional)
I spent a good few months of the second pregnancy filled with dread.
Worried about how I would cope, worried about how it would impact the little one already here; and worried about the strain on my marriage.

And all of those worries came true, to put it bluntly.

I gave birth to a £9.10 boy on the bathroom floor, without so much as a glass of water, because my husband didn’t believe that I was in labour… Five days after his birth, he ran back to work and I was left with a dying mother and two little ones.
Unbeknownst to me, he was carrying on with someone in work and plotting allsorts of skulduggery

So first off, my advice to you would be asking yourself honestly did you marry ‘the one’ or ‘A’ One?

And what about you?
Do you feel okay now – labour is no picnic and you need to be strong and fit as possible to manage a newborn baby and a toddler.
Do you have a good support network around you and is it solid as a rock?
The circle of life is a vicious one, so you need to have a cast iron support network. Parents die, relatives get sick, Jobs are lost, money runs out…
I didn’t have a ‘shit hit the fan plan’ but I was a little bit naive back in the day…. I just wanted to be a mother, after years as a corporate bunny.

What I should have thought was – what dreams would you like to achieve in this life and how are you going to achieve them?
A dream is not making a lot of money – it’s being personally and spiritually fulfilled…..(anybody?)
This is your life and your body and it’s about you. So not only do you need to consider the pharmaceutical aspect of it, you also need to consider the opinions of people who have actually taken this drug, consider studies as to its effectiveness -(as if you were researching to help your child i.e. In depth, swerving the worst case scenarios)

Take a long hard look at your life and peer for any cracks, again like Sherlock
They get bigger, believe me.

If you asked me honestly, I would honestly say ‘a babe in hand is worth two in the ovaries’ and don’t compromise your family for a little person who doesn’t even exist yet.
I know your hormones are raging and crying out for another baby – but when that baby turns into a teenager (and then goes on to rule the world for example), you and your husband
( hopefully) will be left, potentially holding the grand kids and only ever seeing your kids on FaceTime .
So look at the bigger picture and take your time making your decision after you have Sherkocked your life, consider what you do have and what would be devastating to do without.
They may find a cure – but they may not in your lifetime.
. And…
In my humble opinion siblings never get on as well as friends/cousins and as we all know you can pick your friends but you can’t pick your family.
The friends my children have are as much use to them than each other, and you can’t miss what you never had.

This may all be academic if you have lots of brothers and sisters and your child has lots of cousins already – if this is not the case(and your biggest concern is them growing up alone and as an only child)
then seriously consider giving your evidence to your neurological team, as to why you are going to defer treatment until darling number two comes along.
Use the force – you are a warrior now

Just sayin

Love and light from Liverpool always ✨ and magical luck to light your way lovely ✨


spunky
1 year ago

My MS neuro suggests Lemtrada for his patients with active MS that would like to start a family. This possibly could be an option for you?


ashory
1 year ago

I’m pretty sure at the end of the day when your child is grown if you were to ask them if they would have preferred a sibling over you being as healthy as possible for as long as possible the answer would certainly be your health!

I personally chose not to put off treatment when I was diagnosed at 27 despite coming to the realisation that I do want children very much. Reason being if I do have Children in future I want to know I have done everything I can to make sure I am well enough to care for them for a long time to come!


bowlocks
1 year ago

lucyh
1 year ago

I’m with @mermaidia11 with her bird-in-the-hand analogy. We stopped with one child (I am from a two children family; my sibling and I barely speak to one another). We have fretted as to whether we made the right choice, but one six-year-old child is plenty of work…I guess if we’d had more we’d manage, but I simply don’t know how.

Maybe take the treatment and re-visit when appropriate (I have a friend on Tysabri who took her last monthly dose, tried – and succeeded – to get pregnant a month later, and was put back on Tysabri more-or-less straight after the birth), take care, trust your gut instinct, and good luck! XX


sonia1984
1 year ago

I stopped at one child as fatigue issues due to Ms made the thought of a second child impossible. I also had to decide do I get pregnant with a second child thus creating an increased chance of another relapse after birth. I need to be as healthy as possible for my one and having a second could have compromised that. I made the decision to be happy with my one and to put her first and foremost. My child is an only and loves it she gets to do more extra curricular stuff, she gets good grades and I can concentrate fully on her, I also make sure she has a large friend base. A second child doesn’t guarantee they will be close nor around as you age. I have a brother who lives hours away from family and I’m lucky to see him once a year. You have to do what’s right for you but there is nothing wrong with stopping at one.

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