Re: "And would your recommendations of which drugs to consider be influenced by the risks of the COVID pandemic?"
Apart from making sure you are vaccinated and on the NHS vulnerable list we don't let COVID-19 affect DMT decision making anymore than other infections and factors. We are now living with COVID-19 as simply another infection.
We will let you know once the study is approved and ready to go. I will also do an MS-Selfie on the study. The contract for the research has just been signed so it will take time for the study to get ethical approval etc.
Thank you. I start ocrevus next Friday. Such a complex decision having failed tecfidera after being stable on it for 5 years. I’m 35, want a baby - not this week but when a 12 month washout is discussed hard not to feel a bit despairing. My lovely MS nurse just parrots the spc when I try to discuss the topic.
This and a similar post you did some time ago makes me feel like I might be able to tempt my neurologist into an “off-licence” discussion when the times right. Thanks for empowering people - you’re awesome.
If you don’t have time to reply - no problem - but is this likely to become Abn guidance anytime soon?
Could you share more behind the pregnancy advice? As it’s so different to what the product information says (and my neurologist’s original advice) it’s difficult to know what to trust
I know several US neurologists who start anti-CD20 therapy in pregnancy for mainly NMO and occasionally MS to prevent further attacks. They do this knowing the babies will be born B-cell depleted, but sit tight and wait for the B-cells to recover. The latter has implications for vaccinations in the babies but that can be managed by making sure the babies are B-cell replete before vaccinating them.
This takes me back many a year to newly-dx me, 38 with very active RRMS, and wondering whether Mother Nature would manage against bad odds to slip a baby under the wire before my much-needed Avonex start date. She didn't. But the next generation of women with MS face pretty much the same dilemma, it seems. I really feel for women in this position. It isn't easy.
I was in a similar situation at 37 after diagnosis 3 years prior. In order to stay on a DMT as much as possible, I turned to IVF to get pregnant more quickly. Joke was on me in that I was able to get normal embroyos but I had recurrent miscarriages (unrelated to MS). Miscarriages also triggered relapses for me, so that was problematic. Fast forward, my neuro encouraged me to think about surrogacy. After lots of saving, hiring an agency, we found a surrogate match nearby. It took some time and patience but we now have a happy, healthy baby girl who is 7 months old. I'm now 41. Hoping the best for you and your family.
Dobson et al. Anti-CD20 therapies in pregnancy and breast feeding: a review and ABN guidelines. Pract Neurol . 2022 Jul 8;pn-2022-003426.
Neurologists increasingly use anti-CD20 therapies, including for women of childbearing age, despite these medications being unlicensed for use in pregnancy. Current evidence suggests that women can safely conceive while taking anti-CD20 therapy. Women should not be denied treatment during pregnancy when it is clinically indicated, although they should be counselled regarding live vaccinations for their infant. Women receiving regular ocrelizumab for multiple sclerosis should preferably wait 3 months before trying to conceive. There are few data around ofatumumab in pregnancy, and while there is probably a class effect across all anti-CD20 therapies, ofatumumab may need to be continued during pregnancy to maintain efficacy. We recommend that anti-CD20 therapies can be safely given while breast feeding. It is important to make time to discuss treatments with women of childbearing age to help them choose their most suitable treatment. Outcomes should be monitored in pregnancy registries.
Re: "And would your recommendations of which drugs to consider be influenced by the risks of the COVID pandemic?"
Apart from making sure you are vaccinated and on the NHS vulnerable list we don't let COVID-19 affect DMT decision making anymore than other infections and factors. We are now living with COVID-19 as simply another infection.
Hi, your study about measuring grey matter looks very interesting, when does it start and how can people sign up to it?
You have to be a patient at our centre.
I'm a patient at your center, how do I apply for the measuring grey matter study?
We will let you know once the study is approved and ready to go. I will also do an MS-Selfie on the study. The contract for the research has just been signed so it will take time for the study to get ethical approval etc.
Thank you! I'll definitely volunteer for it 👍
Thank you. I start ocrevus next Friday. Such a complex decision having failed tecfidera after being stable on it for 5 years. I’m 35, want a baby - not this week but when a 12 month washout is discussed hard not to feel a bit despairing. My lovely MS nurse just parrots the spc when I try to discuss the topic.
This and a similar post you did some time ago makes me feel like I might be able to tempt my neurologist into an “off-licence” discussion when the times right. Thanks for empowering people - you’re awesome.
If you don’t have time to reply - no problem - but is this likely to become Abn guidance anytime soon?
https://pn.bmj.com/content/early/2022/07/07/pn-2022-003426.abstract
Could you share more behind the pregnancy advice? As it’s so different to what the product information says (and my neurologist’s original advice) it’s difficult to know what to trust
I know several US neurologists who start anti-CD20 therapy in pregnancy for mainly NMO and occasionally MS to prevent further attacks. They do this knowing the babies will be born B-cell depleted, but sit tight and wait for the B-cells to recover. The latter has implications for vaccinations in the babies but that can be managed by making sure the babies are B-cell replete before vaccinating them.
https://pn.bmj.com/content/early/2022/07/07/pn-2022-003426.abstract
This takes me back many a year to newly-dx me, 38 with very active RRMS, and wondering whether Mother Nature would manage against bad odds to slip a baby under the wire before my much-needed Avonex start date. She didn't. But the next generation of women with MS face pretty much the same dilemma, it seems. I really feel for women in this position. It isn't easy.
I was in a similar situation at 37 after diagnosis 3 years prior. In order to stay on a DMT as much as possible, I turned to IVF to get pregnant more quickly. Joke was on me in that I was able to get normal embroyos but I had recurrent miscarriages (unrelated to MS). Miscarriages also triggered relapses for me, so that was problematic. Fast forward, my neuro encouraged me to think about surrogacy. After lots of saving, hiring an agency, we found a surrogate match nearby. It took some time and patience but we now have a happy, healthy baby girl who is 7 months old. I'm now 41. Hoping the best for you and your family.
Dobson et al. Anti-CD20 therapies in pregnancy and breast feeding: a review and ABN guidelines. Pract Neurol . 2022 Jul 8;pn-2022-003426.
Neurologists increasingly use anti-CD20 therapies, including for women of childbearing age, despite these medications being unlicensed for use in pregnancy. Current evidence suggests that women can safely conceive while taking anti-CD20 therapy. Women should not be denied treatment during pregnancy when it is clinically indicated, although they should be counselled regarding live vaccinations for their infant. Women receiving regular ocrelizumab for multiple sclerosis should preferably wait 3 months before trying to conceive. There are few data around ofatumumab in pregnancy, and while there is probably a class effect across all anti-CD20 therapies, ofatumumab may need to be continued during pregnancy to maintain efficacy. We recommend that anti-CD20 therapies can be safely given while breast feeding. It is important to make time to discuss treatments with women of childbearing age to help them choose their most suitable treatment. Outcomes should be monitored in pregnancy registries.
Hello Gavin. I would like your opinion in my personal case of lack of diagnostic. How could I talk to you?
Thansk