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Pregnancy and Tecfidera

Hi all,

I was diagnosed with MS 7 years ago and have so far been a lot better on DMD’s. Started on Rebif (with just 1 relapse in 5 years) and now been on Tecfidera for 1.5yrs and so far no relapses (touch wood).

I’m currently 34 so want to start a family (before its too late) but as I’ve been so well I’m scared to death of coming off Tecfidera and really want to start trying while still on it (against my nurses advice). I worry if I come off and it takes a long time to get pregnant that I’ll relapse.

As it’s a new drug has anyone else fallen pregnant on it and is the baby okay? I’m also worried that as I feel so well could having a baby change the course of my MS to make me wish I’d not bothered?

Any help and advise would be much appreciated :slight_smile:

Thanks x

This was in the Barts Blog recently.

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Hi,

I could have sworn my wifes neuro said dont get pregnant on it, I think you need to confirm with your neuro. Sorry I wasnt paying attention at this part on the consultation as I have the disability of been a Man and was probably thinking about food.

As for your line “I’m also worried that as I feel so well could having a baby change the course of my MS to make me wish I’d not bothered?”

Having Children will affect you whether you have MS or not, I dont have MS and I am knackered, also in forties doesnt help.

Will having babies make your MS worse, who knows. will you be tired and have no energy and never sleep easy again, well yes but thats children for you.

Is it worth it O Yes, it what makes you want to battle on through all the hard times, seeing there little faces, knowing they love you, no matter how tired mummy is or how much her legs hurt. I think having our children helps my wife keep going every day.

If your going to be fatigued it might as well be for your children

by the time your kids are 10 who knows what advances in medicine they will have made by then.

Good Luck hope it all works out for you

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I was told not to get pregnant on Tecfidera. I was on one of the Tecfidera trials at the beginning.

The thoughts on this at the time were that there was not sufficient data to conclude it would be safe.

I didn’t have the dilema you have as i already had my children when i started Tecfidera.

My personal thoughts would be to stop Tecfidera as you start trying for a baby. Why risk your child having a disability? It just isn’t worth the risk of having a child damaged by it.

Children are lovely and i cant imagine my life without them but they are hard work and if you add a disability into the equation it would make it even harder.

I wish you all the best and lovely children but i wouldn’t take the risk. Listen to your ms nurse and doctor and take their advice.

This is just my personal opinion of course.

Best wishes

Teresa.x

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P,s sorry i forgot to mention - you are more likely to relapse after the birth so it might be a good idea to plan to go back on the Tecfidera as soon as baby is born. x

speak to your nurse to put this into place. Take care. x

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Most time it`s good to share problem. WHO KNOWS??

I suffered Adhesions that damaged my uterus and this is really what i think you should understand.

I finally was able to conceive a child to my own the year 2016 after 21 years without any issue. this really was the worst thing ever. It was a miracle that indeed shocked me. because i was left with no option but to use a Herbal Health Concoction that was prepared from Herbs to help the Immune. I got to find out about this from someone and i talked to the direct source about my problem. Hes name is [removed by admin] and HE told me how some necessary few herbs will be useful as to womens health and recovery and he had to do what knows best. He sent the Herbs to me and gave instruction on method of use. this all happened and i really have been able to say i`m glad God did this.

[removed by admin]

Really just felt like dropping this, not for all THO!

Thanks for all your replies, I haven’t been on here for a long time and only just seen these responses.

i did start to try while on tecfidera with a view to coming off it as soon as I fell pregnant however we haven’t been able to conceive yet so in a way I’m glad I haven’t come off it (it’s been over a year now)

i was hoping by now there was more evidence/cases of people who have fallen pregnant on the drug but it doesn’t seem so!

i always ask different consultants and nurses who still advise to come off it as there is a lack of evidence but being off the drug for years while trying is just not an option for me.

im going to call the drug company to check their advise but if anyone has found or has any further evidence or advice it’s much appreciated x

Hello Lucy. I’m sorry you’re still in a bit of a quandary about taking Tec under your circumstances. Talking to the company might be useful. I’m also sorry to see the previous poster HeatherBouey (joined a few hours previously and trawled to find relevant posts), used your sensitive thread to promote their own products and website. I reported the post to admin as Spam/solicitation, and am surprised and disappointed to see it has only been edited, not removed.

I wish you all the best.

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Thank you x

Hi ,

i have been on tecfidera for about two years now and i’ve never felt better … i’ve had so many issues with optinic neuritis, weird thing happeining to my vision, can’t see clearly, i kept having headaches and thank god, tecfidera made it all stop;;;

except for the past week … i am trying to get pregnant and i obviusly need to come off the medecine, however within two days of stopping the medecine, some of the my symptoms came rushing back,

wondering if anybody experienced a similar thing ? as soon as you stopped your treatment, did you experience any relapse?

x

Hiya,

i’m sorry to hear about that. i do have a question though, have you experienced any relapse while you were off the medecine?

x

Thanks for everyone’s replies it’s good to see I’m not the only one with this dilemma!! I’m still on the drug and haven’t conceived so in the process of getting tested to see if we can have children, had I come off it I’m pretty sure I would have relapsed in the time ‘trying’ by now. One problem I am having however and I think it could be tecfidera related is my hair seems to be breaking and falling out! Wasn’t sure if to post a new thread about this but I think I’m going to have to come off the drug anyway now as I’ve noticed quite bad thinning of my hair now over the past few years so feel it could be time for a DMD break even though that’s very scary! I’m seeing my consultant end of this month so will hopefully have some answers but has anyone else experienced hair loss/thinning on tecfidera? I’ve googled it and it does seem to be an unofficial side effect that is now cropping up? x

curious if you have an update? i’ve been on tecfidera since it came out…maybe 5 years now. I’m 41 years old and have tried having a baby the entire duration i’ve been on the meds. i have had 4 miscarriages all in the 5th week of pregnancy. i still have hope and quite honestly have not been on the meds for the past 3 months. i’ve been able to manage and i have changed to a less stressful job which has helped. Summer is coming and that’s usually when i feel the symptoms the most. I’m trying to get pregnant before then. :slight_smile:

Anything you can share would be great! There’s just not enough information on the effects on TTC women yet…guess we need to rely on each other. :slight_smile:

Hi I also started to loose my hair and they eventually found it in the small print that it can cause hair loss and I had to change medication. I am also trying for a children. I was sent for ivf but they wanted me off all my meds and we weren’t, willing to come off all of them but I did come off some that my Ms doctor recommend I came off. When they pulled out of the treatment, we started looking at adopting and they can’t see passed my Ms even though I’ve haven’t relapsed for over 10years and have been in hospital with Ms for 20 years. We got through stage one but now they’ve stopped us before we went to panel. with not much explanation but that two medical reports don’t make sense one says I can only walk for 20 minutes the other says an hour. As we tried to explain it depends on the day.

I am about to turn 40 years old. I know I’m running out of time.

Does anyone have any suggestion. Please help

Hello I was wondering if anyone can help me. Me and my husband have been married nearly 5years. We would like to start a family. We sadly can’t have children naturally and the fertility doctors wanted me off all my meds which my Ms doctor wasn’t happy about.

i was diagnosed when I was 21 and I turn 40 next year. We have tried adoption but again they just keep throwing up hurdles. They aren’t happy that different reports say I can walk different distances. To look at me I look “normal” but sometimes when tired I can’t walk as far.

please help me. I work as a teaching assistant and have done for 15 years looking after other people’s children. All I want is look after our child and so does my lovely husband.

Has anyone else had this problem or do you have any suggestions. Thank you so much for your help. B

Hi all, Sorry not been here on a while and only just noticed all these comments! So, an update from me, we found out we can’t have children naturally so have been on the ivf waiting list and I got my injections for IVF last month with a plan to start on these next month. I’ve been told to come off tecfidera before I start injecting which I was looking forward too as now my hairs a total mess! Unfortunately, and I’m not sure if it’s the stress of the IVF now, but I’ve been having really bad fatigue to the extent that if I go for a 30minute dog walk in the morning I’m pretty much out of batteries for the day! I’m really worried now that I need to get on a different medication rather than start the IVF as having a child can be difficult if I can’t walk far. It’s interesting to see a few of you seem to be having the same walking problems, have you been told this is fatigue? I’m unsure if it’s a ‘relapse’ as it’s different to my other relapses in that it slowly seems to be getting worse but varies on a day to day basis! Anyway, I’ve been told I can go on Lemtrada (which I’m very scared about) but the plan was to do this after the IVF but now I’m thinking I might need to go on sooner rather than later and at 37 not sure If i just freeze my eggs first and then I have the option if I feel better after being on new meds for a while! It’s all very complicated, interesting to see that the whole adoption could be out of the question too, that was my next step if the IVF didn’t work. Thanks for your replies, it’s good to know I’m not the only one in this situation, please keep me posted of how you’re all getting on. You’re right, at least we all have each other on here xx

Hi, have you thought about freezing your eggs and perhaps surrogacy? I have a friend who also has MS, she relapsed really badly after her first child and has recently been for HSCT. Now she’s feeling a lot better but doesn’t want to put her body through another pregnancy so is using the eggs she froze before her HSCT to have a surrogate child.

it could be an option if you really want children and your ms doc doesn’t want you to come off meds and adoption isn’t looking a good option? Just a potential solution, I know nothing about it cost wise etc.

Im gutted to hear they’re funny about adopting, I always just assumed this would be fine :frowning: xx