This was much appreciated. I wanted to ask about another aspect of starting a family with MS: My friends with kids are 'constantly' sick and that makes me a bit concerned as my MS-symptoms become much worse during infections and a time afterwards. Do you have any thoughts or experiences on this aspect of early parenthood and MS? Is there any way to prepare for this that can reduce the risk or severity of these 'pseudo-relapses'? Thank you.
Unfortunately, not. If you are worried about getting infections because you are on a chronic immunosuppressive therapy is to consider an IRT (cladribine or alemtuzumab). With IRTs the immunosuppression is front loader and once your immune system recovers you are able to deal with common infections.
This was very very helpful. I honestly didn't know there are so many DMTs which can be used during pregnancy. Neurologists here in Bosnia usually do not like DMTs and pregnancy in combination. I have 9 y/o daughter and I started giving her 2000 i.u of D vitamin a month ago. I hope she will not have bad luck to be one in 40 people who will inherit MS from me. No one ever suggested that, not my neurologist, not even the pediatritian. Thank you again and wish you all the best
Thank you so much for such a detailed article! It comes at a timely manner for me. I was diagnosed postpartum and am about to start ocrevus. I have and continue to struggle over the decision as to whether to keep breastfeeding this little guy who is now 6 months and by every measure very healthy. I understand that the opinion of ocrevus's safety in lactation varies amongst neurologists. For your patients, do you recommend withholding breastfeeding for any length of time post ocrevus infusions? And, do you suggest any monitoring of the baby's bloodwork for safety even if exposure is likely minimal?
Nope, I tell them to continue breastfeeding and not to worry. So little ocrelizumab gets into the breast mild to cause an effect and then as ocrelizumab is a protein most of it gets digested by enzymes in the gastrointestinal tract.
Very interesting issue. I am a mother-of-three. I was quite young at the time, had wonderful pregnancies, natural deliveries (and even a homebirth!) and I breastfed for a very long time according to Western standards (>3 years for each child). At the time I still hadn't a diagnosis, as I was misdiagnosed for over 20 years. I feel pregnancies and breastfeeding probably helped me and were my pseudo-DMT for years, even if I don't know what science and medicine say about it.
But if I had known, if I'd been diagnosed on time, I'd probably decided not to build a family. It's an "ethical" issue: 1) I don't want to become a burden for my children, 2) 1/40 or 1/80 is too much for me, it's really hard for me to live with such a worry. It sometimes turns into a nightmare...
Yes, but knowing about the risk and what you can do to potentially reduce the risk has to be better than living with your head in the sand. The authorities in the UK, for example the HMRC, don't accept ignorance as an excuse for not paying taxes. I am sure that the rule should extend to preventive healthcare. Maybe I am wrong?
Such great information that I wish I had access to when I was deciding to get pregnant 19 years ago.
Can you add anymore on the risks you pass onto your kids? I’m always nervous to see if they have EBV if they ever have a blood test. My 18year old daughter had a strange episode playing netball recently - blurry vision, pins and needles in one hand and cognitive impairment (couldn’t find some words couldn’t spell) all resolved within 4hours or so - could be she didn’t eat enough but felt neurological- she immediately was worried it was MS - that was heartbreaking. What would you suggest- sit and wait if it happens again or push for a review?
Interesting to know all the indications for pregnancy. I have a cousin with ms that had to delay starting Kesimpta for almost 3 years as she wanted to have 2 babies. Do we know anything related to sperm count/male fertility on while on a DMT? I would be curious to know as Im on fingolimod @24 years old
Yes, male patients on teriflunomide are meant to follow the same rules as female patients. Alemtuzumab transiently drops sperm counts, but does not have a negative impact on fertility. Cladribine does a similar thing to sperm counts as alemtuzumab and it is recommended that men don't father a child for at least 6 months after the last dose of cladribine. All the other DMTs are okay except for AHSCT. The conditioning regimens that use cyclophosphamide are genotoxic and can cause male infertility; hence, male patients wanting to father a child need to bank sperm prior to having AHSCT.
The point of the newsletter was to show you how complex the decision making is and that it needs to be personalised. If this patient decides to go ahead with wanting to fall pregnant she will need to switch from fingolimod to one of the safer options for pregnancy. What will decide which DMTs she can be offered will depend on what activity she had prior to starting fingolimod. I assume the injectables failed her before being switched to fingolimod, which is second-line DMT, on the NHS. Without knowing more she is definitely eligible for fumarates and anti-CD20 therapies, but may be eligible for natalizumab, cladribine and alemtuzumab. She would also need counselling on parenting, etc. She would need to see her GP to have a well woman assessment and to be started on iron and folate. So a lot to do ....
Hello Professor Giovannoni. Through the MS nurses and yourself, do women who attend your clinics who express the wish to become pregnant have the opportunity to talk to women who have already done so, so that they are able to make a decision? Preferably with women at different stages of ability, both when they became pregnant and some time later. I ask as a retired midwife who also worked in IVF, never having met a woman who had MS throughout many years of practice. Best wishes, Eve.
This was much appreciated. I wanted to ask about another aspect of starting a family with MS: My friends with kids are 'constantly' sick and that makes me a bit concerned as my MS-symptoms become much worse during infections and a time afterwards. Do you have any thoughts or experiences on this aspect of early parenthood and MS? Is there any way to prepare for this that can reduce the risk or severity of these 'pseudo-relapses'? Thank you.
Unfortunately, not. If you are worried about getting infections because you are on a chronic immunosuppressive therapy is to consider an IRT (cladribine or alemtuzumab). With IRTs the immunosuppression is front loader and once your immune system recovers you are able to deal with common infections.
This was very very helpful. I honestly didn't know there are so many DMTs which can be used during pregnancy. Neurologists here in Bosnia usually do not like DMTs and pregnancy in combination. I have 9 y/o daughter and I started giving her 2000 i.u of D vitamin a month ago. I hope she will not have bad luck to be one in 40 people who will inherit MS from me. No one ever suggested that, not my neurologist, not even the pediatritian. Thank you again and wish you all the best
This was an incredible amount of very helpful information! Thank you so much for doing this.
Thanks Doc. Brilliant work for the MS community as always
Thank you so much for such a detailed article! It comes at a timely manner for me. I was diagnosed postpartum and am about to start ocrevus. I have and continue to struggle over the decision as to whether to keep breastfeeding this little guy who is now 6 months and by every measure very healthy. I understand that the opinion of ocrevus's safety in lactation varies amongst neurologists. For your patients, do you recommend withholding breastfeeding for any length of time post ocrevus infusions? And, do you suggest any monitoring of the baby's bloodwork for safety even if exposure is likely minimal?
Nope, I tell them to continue breastfeeding and not to worry. So little ocrelizumab gets into the breast mild to cause an effect and then as ocrelizumab is a protein most of it gets digested by enzymes in the gastrointestinal tract.
Very interesting issue. I am a mother-of-three. I was quite young at the time, had wonderful pregnancies, natural deliveries (and even a homebirth!) and I breastfed for a very long time according to Western standards (>3 years for each child). At the time I still hadn't a diagnosis, as I was misdiagnosed for over 20 years. I feel pregnancies and breastfeeding probably helped me and were my pseudo-DMT for years, even if I don't know what science and medicine say about it.
But if I had known, if I'd been diagnosed on time, I'd probably decided not to build a family. It's an "ethical" issue: 1) I don't want to become a burden for my children, 2) 1/40 or 1/80 is too much for me, it's really hard for me to live with such a worry. It sometimes turns into a nightmare...
Yes, but knowing about the risk and what you can do to potentially reduce the risk has to be better than living with your head in the sand. The authorities in the UK, for example the HMRC, don't accept ignorance as an excuse for not paying taxes. I am sure that the rule should extend to preventive healthcare. Maybe I am wrong?
Such great information that I wish I had access to when I was deciding to get pregnant 19 years ago.
Can you add anymore on the risks you pass onto your kids? I’m always nervous to see if they have EBV if they ever have a blood test. My 18year old daughter had a strange episode playing netball recently - blurry vision, pins and needles in one hand and cognitive impairment (couldn’t find some words couldn’t spell) all resolved within 4hours or so - could be she didn’t eat enough but felt neurological- she immediately was worried it was MS - that was heartbreaking. What would you suggest- sit and wait if it happens again or push for a review?
Difficult to comment except that it doesn't sound like MS at all.
This is so helpful, thank you!
Interesting to know all the indications for pregnancy. I have a cousin with ms that had to delay starting Kesimpta for almost 3 years as she wanted to have 2 babies. Do we know anything related to sperm count/male fertility on while on a DMT? I would be curious to know as Im on fingolimod @24 years old
Yes, male patients on teriflunomide are meant to follow the same rules as female patients. Alemtuzumab transiently drops sperm counts, but does not have a negative impact on fertility. Cladribine does a similar thing to sperm counts as alemtuzumab and it is recommended that men don't father a child for at least 6 months after the last dose of cladribine. All the other DMTs are okay except for AHSCT. The conditioning regimens that use cyclophosphamide are genotoxic and can cause male infertility; hence, male patients wanting to father a child need to bank sperm prior to having AHSCT.
Thank you so much, Gavin. Greetings from Mexico.
What DMT would you recommend to the lady currently on Fingolimod in the case study if she decided to proceed with falling pregnant ?
The point of the newsletter was to show you how complex the decision making is and that it needs to be personalised. If this patient decides to go ahead with wanting to fall pregnant she will need to switch from fingolimod to one of the safer options for pregnancy. What will decide which DMTs she can be offered will depend on what activity she had prior to starting fingolimod. I assume the injectables failed her before being switched to fingolimod, which is second-line DMT, on the NHS. Without knowing more she is definitely eligible for fumarates and anti-CD20 therapies, but may be eligible for natalizumab, cladribine and alemtuzumab. She would also need counselling on parenting, etc. She would need to see her GP to have a well woman assessment and to be started on iron and folate. So a lot to do ....
Thank you Gavin for addressing my query & for continuing to inform us on such issues.
Hello Professor Giovannoni. Through the MS nurses and yourself, do women who attend your clinics who express the wish to become pregnant have the opportunity to talk to women who have already done so, so that they are able to make a decision? Preferably with women at different stages of ability, both when they became pregnant and some time later. I ask as a retired midwife who also worked in IVF, never having met a woman who had MS throughout many years of practice. Best wishes, Eve.