I need some advise. I’m due to start my first round of Lemtrada in just over a month and although i’m feeling pretty positive about it, there is one thing which is playing on my mind - pregnancy! (I was diagnosed with MS in 2015 and have previously turned down any treatment due to the risks associated with DMT’s and pregnancy). I’ve been told from the start of my first round of treatment up until 4 months after the 2nd round (1 year later) I am not allowed to fall pregnant. I’m 27 years old, living with my partner who I have been with for 7 years and I always just assumed I would start trying for a family around this age and now to be told I have to hold off for another 2 years I’m finding it hard to cope. I know I need the treatment as my relapses are becoming more frequent but I don’t know if I should put the treatment off for another year and see if i can fall pregnant before then.
I wander if anyone else has been struggling with the same feeling or if anyone has actually fallen pregnant while having treatment??
I have picked lemtrada as my DMT as choice because of the pregnancy risk. It is the only DMT (i think) that 4 months after round 2 you can conceive naturally, as you would without MS. AS FAR AS I AM AWARE, any other DMT yot have to have a wash out period before conceiving, and then if you don’t conceive within a certain time frame, they will want you back on the DMT before looking at other options- effectively making it slightly higher risk.
I know it seems like a 2 year delay is a long time, but effectively it may mean you are healthy and able to enjoy your kids growing up- thats my take on it anyway. From the lemtrada facebook groupi see that some people have a baby between round 1 and 2, though i don’t think this is actively encouraged.
Your risk of relapse is also higher after pregnancy so having a baby post lem reduces that risk of trying for a baby pre lem- my personal view.
I really struggled with the children/loss of control thing after diagnosis aswell. Our plan is to get married inetween rounds 1 and 2 and then start thinking about kids after round 2, sooner rather than later as you only know if a DMT works in hindsight by having no relapses…so id rather have children ASAP and if all goes well, have a normal(ISH!) life watching my children grow up, and if i do relapse after having kids later on then il of had a bit more time with them without MS issues. Also taking into consoderation my partners parents age as may need additional help with sprogs and life quite far away from my parents/family support network so mindful of that aswell…
Thanks for much for responding. It’s so easy to feel like you’re alone in these situations! It’s funny because I’ve also put it to my partner that the 2 year gap would be a great time to get married (as long as we can afford it). At least then it feels like we’ve moving forward rather than being stuck in limbo for 2 years. I hate the thought of my life being on hold until the treatment is over.
What you’re saying definitely makes sense. A lot of the time I feel like i’m being selfish for wanting to try for baby before I’m ‘well’ and I hate the thought of having to rely on my partner to have to look after me (although he’s been such a support through all of this).
I’ve only spoken to my ms nurse briefly about my concerns but I’m not that great at opening up and haven’t really spoken about my illness at all since being diagnosed. And any ms professional I have spoken to has always said my health should be a priority over trying for a child right now (I guess they’re right!).
I think it’s just hard to accept that my life is taking a different path than the one I had planned.
I am about 5 years diagnosed now, was on rebif, tysabri and then fingolimod. I came off the fingolimod in Nov 2016 in preparation to start IVF, then during jan/feb this year I had the worst 2 relapses I have ever had (slap bang in the middle of our first IVF try) MRI showed at least 7 new active lesions. Neuro really wanted me to stop ivf and go straight for Lemtrada - so leave the ivf for another 2 years, I didnt want to. At one point during that appointment he got so frustrated with me he threw his hands up in the air and walked out saying he would have to get someone else to make me see sense.
I agreed that I would at the very least meet with my MS nurse about starting lemtrada, she was so much more understanding of our wants of a baby, but what was of more interest, she said it isnt unheard of for women to have a baby in between the lemtrada treatments.
I understand what you are saying about feeling selfish about wanting a baby before you are “well” - I have always had pretty bad relapses but then, luckily, recovered very well. My husband also has MS - so it as a huge decision to come off treatment for the IVF. Despite those 2 relapses I had - I am so happy I stuck to my guns and did what I wanted to do. I am older than you (33) and already much older than i wanted to be when I started a family so there was no way i was waiting another 2 years.
Pregnancy can be kind to MS, breast feeding once you deliver also offers some protection against relapse. We were lucky enough that our 2nd round of IVF worked and I am due late Jan 2017. My neuro wants me to start Lemtrada within 2 weeks of delivery, I havent decided on that yet, I cant imagine I would want to leave a newborn for 5 days (even though I can come home at night) that soon.
MS throws us so many many curve balls, its great to hear what other people did or didnt do, but I honestly believe you should go with your gut. You will always find someone who disagrees with your decision. I cant tell you how many times I/we were called selfish for trying for a baby when we both have MS - didnt stop us.
Good luck with your decision, I will be really interested how you get on whichever way you choose to go, if you dont mind sharing of course!
Thanks for messaging. It’s so good to hear from someone who decided to put baby first. I can imagine it’s been very frustrating, especially when you have to try and explain your decisions. For me, putting off the treatment was kind of a way of gaining control again, by going against what other people were telling me to do.
From what you’ve said I can completely understand why you made that decision and like you said, pregnancy is kind to MS!
Has your husband been offered Lemtrada too?
I’ve spoken a lot with my partner and we’ve decided to go ahead with the treatment and get it out the way. I start end of Sept so haven’t got that long! And maybe we’ll plan a wedding in the 2 years give me something to focus on.
My doctor just mentioned Lemtrada treatment to me. I was diagnosed in 2009b started with Scones then fingolimod and stopped July 2016 in hopes of starting rituximab due to my lymphocytes dropping during use. I just started copaxone one month ago and my MRI 2 weeks ago shoes new lesions on my brain and cervical. As of right now I’m thinking about holding off on Lemtrada because my husband and I had been planning on starting a family later this Summer after I graduate nursing school. I’m almost 32 and don’t want to postpone emergency another 2 years. I’ve already postponed due to school.
Hello everyone… I am one month one week post Lemtrada and i went for this treatment afte Gilenyia, Tecfidera, then Tysabri… I ws doing well on Tysabri but PML was going up so i had to change PLUS wanting a baby! I’ve been married for more than a year now and ive been with my husband for 3 plus years… Im turning 27 soon i know i have time im still young but i really want to have the chance to hold my baby! To add to that is my parents are leaving the country next year and my hubby’s parents aren’t in th same country, so i think i will need some help with all of this especially that it will be my first! my hubby is half in half out… He wants a baby but he’s worried i woldn’t be able to handle it… I did agree with my Doctor that if in God’s will i get pregnant between the rounds after delivery in a month or less i start round 2… im still waiting to hear from all women out there that got pregnant between rounds and their advice… Wish you all the best!
I had Lemtrada in 2010,2012 and 2013,I started the treatment when it was in it’s final trial stages.I had my first baby in September 2016.I have a real love/hate relationship with the treatment,I think this is partly to do with the fact that I was a trial participant so it consumes your life slightly more than if you were to have it now,but also because,like you,I very much felt like my life was on hold for such a long time.However,now I appreciate that without the treatment I may never even have got to a stage where I felt confident enough about my health to even consider having a baby.I was 36 when I had my daughter who is now 16 months old.I had so many plans for my life which kept having to be delayed because of relapses/treatment etc.I completely understand how you feel and ultimately the decision has to be one you are happy about.All I can say that from my personal experience,having to endure years of feeling static whilst watching my friends get married/have babies it was completely worth it.It was incredibly hard at the time but now,thanks to Lemtrada I am able to lead a ‘normal’ life and my little girl was 100% worth the wait,I did this for her as much as me so I was in a place where I knew that I could be the kind of mother I always wanted to be.I really hope this has helped you a little,if you want to chat some more then please feel free to give me a shout!
Thank you so much for your response it made my eyes water! (im feeling down lately i think the lemtrada played a role but im trying to ignore it) and yes the feeling of all my friends having babies and all!!! i’m still thinking of trying to get pregnant in between the rounds… if u dont mind i would like to ask u some questions…
how are you feeling now after 5 year?? how many rounds did u do? did ur MS symptoms get better? and are u taking any medications now? do u have any advice for pregnancy or vitamins or anything??
I feel really good at the moment.I’ve had three rounds of Lemtrada,the first two were on consecutive years so I found that pretty tough going.My MS symptoms are low level,I have occasional tingling,fatigue,heavy legs but it’s completely manageable.I believe that without the treatment things would be much worse.I was on Rebif for a year before I had Lemtrada and I was constantly relapsing,I found it hopeless.I don’t take any medication now,I have annual MRI scans and should they show any new activity then I would have more Lemtrada.I didn’t start taking any new vitamins before getting pregnant but started folic acid as soon as I found out I was pregnant.Personally,I’d be slightly wary about starting a course of Lemtrada a month after having a baby,you obviously want to be as healthy as you can be but four weeks is not a long time for your body to recover physically,emotionally,hormonally.You know yourself and your bodies capabilities better than anyone so if you feel like that’s something you could manage then that’s fantastic!I think it’s understandable that your husband is 50/50,I always think it’s harder for the people around us than it is for us and he loves you so will always worry!If you have any more things you’d like to know please feel free to ask!x
Good morning ! Thank you for taking ur time to answer my questions… i really appreciate it… hmmm as for my body i feel like it just can’t wait sometimes to have a relapse (i guess my cells are way too aggressive!!) i will have to think that through very well… i never saw ur view of how others around us think of our decisions!! that helped so thanks for that too!! i just have one more question if you dont mind.,. my menstrual cycle was 2 weeks late after r1 and from what i see its gonna get pretty messed up… how did u keep track of ur ovulation and when did ur menstrual cycle go back to normal??
Hi there! I was actually on the pill when I had treatment so everything stayed pretty much the same.Luckily when I came off the pill my cycle was pretty regular.I don’t know much about Lemtrada effecting periods but i’m guessing that if you’re normally quite regular and the treatment has disrupted that it will just take a little while to settle back down x
I am 38 and was diagnosed 7 years ago with luckily a fairly mild form of MS. I decided not to try any DMT’s but my neuro has advised me to consider Lemtrada. I’ve had quite a bad relapse after bowel surgery in November and feel my symptoms in general are getting slowly more frequent.
I got married last June and are considering trying for a baby but obviously time is not on our side. My main concern is that after 2 surgery’s I have relapsed and the possibility of this happening during or after pregnancy. So I have to weigh up what’s more important- baby or health!
For those that have had Lemtrada did you suffer any problems or side effects? From what I’ve read it seems the most effective DMT. Is it widely available in England?
I have been seeing a neuro in London but he is retiring and I am considering transferring back down to West Sussex where I live but I hear not all treatments are available in certain parts of the country.
Im considering starting Lemtrada and just wondered how effective you’ve found it… when you say you currently don’t take any meds did you find you didn’t need them after Lemtrada or did you not take any before?
Its so much to take in and make a decision on… I’m on amitriptylene and Pregablin at the mo but would love not to have to take anything.
thanks again <3