2 posts Page 1 of 1
Hi - just wondered if anyone has any experience of being on tysabri and then wanting to try to conceive? I really just wanted to see what others have done in terms of coming off the medication and then in terms of re-starting with any medication if at all after pregnancy (if you're happy to share of course!). I've spoken with my neurologist who has shared his experiences with similar patients and his preferences and I totally appreciate everyone is different and the decision to have children is incredibly personal personal.

I am currently on tysabri (I'm doing fine, fit, following oms etc and everything is stable and even improving on the MRI's!) - obviously my plan is to go off tysabri and then try to conceive as by that time I will have been on T for almost 2 years anyway. I'm Jc virus negative.

I was diagnosed with Ms prior to having kids a couple of years ago when I was 29.

Clementine xoxo
I was on Tysabri for several years, and now I'm pregnant.

I had very active MS around diagnosis - lots and lots of relapses, with no remission in between, which is why my neuro offered me the option of Tysabri and why I chose that instead of beta-interferon (which he also offered as an alternative). I started OMS very soon after diagnosis. I've got massively better since, but I have no way of knowing how much was due to OMS and how much was due to Tysabri (the one exception to this is my balance and coordination, which showed a sudden and striking improvement when I started Pilates, so I know that at least this type of exercise was very beneficial for me). Because I got so much better, my husband and I began to think about starting a family - which was something we'd always wanted to do, but we'd kind of shelved the idea when I was very ill as we didn't know whether I could cope with it.

Before trying to conceive I spoke with my neurologist and with my MS nurse. The neuro said I'd need to stop Tysabri for 3 months before starting to try to conceive. The MS nurse said on the record, I should stop Tysabri for 3 months before trying to conceive; off the record she knew lots of patients who'd conceived while on Tysabri then stopped taking it and they'd all had perfectly healthy pregnancies.

I searched PubMed etc and looked at scientific papers about Tysabri during pregnancy. It seemed there was some evidence of foetal abnormalities in mice, but that human pregnancies in Tysabri patients (of which there were only a small number) had the same rates of abnormalities as for any normal human pregnancies.

I spoke with my husband, saying that I would be OK with the idea of stopping Tysabri then trying to conceive, but I was reluctant to wait for 3 months before even starting to try. He said he was very worried about me stopping Tysabri as I might get badly ill with MS again (I thought that by this point OMS would probably protect me, but he doesn't place as much trust in OMS working for me as I do). We agreed that we'd try for a baby and that if I did get pregnant I'd stop the Tysabri straight away. We also agreed that I'd try to breastfeed our baby, but that if MS symptoms flared up I'd start Tysabri again and we'd switch to formula.

About a year later, my period was late and a pregnancy test was positive. Now I'm 4 months pregnant, and so far everything seems to be OK (touch wood, fingers crossed etc).

I'm not trying to suggest what anyone else should do, but that's what happened with me, and why I made the decisions I did.
2 posts Page 1 of 1

Who is online

Users browsing this forum: No registered users and 1 guest