Hi all, I saw my MS Nurse for first time yesterday & she went through what would happen at my MS appointment in May & discussed the two treatment options available to me which are the two above. I’m 32 (33 at end of year) and really lost as to which treatment to take, Lemtrada although aggressive looks a good treatment where as copaxone doesn’t seem as effective. My husband & I want a child & we may have difficulties as my progesterone is low, can anyone offer any advice on this, has anyone held off having children & had Lemtrada or equally did you not hold off & go for copaxone? Any advice would be much appreciated. Thanks for reading & listening. Kim x
Hi Kim
I have never been on Copaxone. I was on Rebif, then Tysabri, then Fingolimod and then Lemtrada. I was going to come off Fingolimod then have Lemtrada, but I had a baby in the middle (she is an IVF baby so I was able to carefully plan it so I wasn’t off of meds too long before falling pregnant) I am just coming up to round 2 of Lemtrada in June.
I have been very lucky with Lemtrada, very few side effects but more importantly for me - no relapses. The monthly blood tests can be a pain but thats my only observation so far. If Lemtrada had been an option for me 10 years ago - I would have jumped at it, in my opinion, I would hit MS as hard as I could. But, that may be easy for me to say as I have had one round of it - I remember it was very daunting reading all the information about side effects/what it can do to you…
xx
Thank you that’s really helpful, and I’m thinking I should go with Lemtrada & get myself sorted as best I can. 16 months isn’t the end of the world & then afterwards I can focus on having a child & my options. What was the wait like for you to start Lemtrada? Was it a fairly quick or a few months wait? Thanks again for your help. Xx
I’m on copaxone (3 times weekly) was on Tecfideria and it was lowering my bloods too much so back on copaxone (was on it previously) - lemtrada is supposed to be one of the best at treating aggressive MS and copaxone has been about a long time and to be fair had kept me pretty stable
No problem - to be honest, in hind sight, i should have done Lemtrada first… I could have had it pretty much as soon as I had had my baby. But I really wanted to breastfeed and kept putting it off…then I got really ill so I wasn’t allowed to have it. However when they decided I was well enough, it was only a month or so - you need to have a few tests before you start - smear, chest xrays, bloods and so on. There is a really good facebook group - Lemtrada UK & Ireland if your interested.xx
Copaxone is safe to take during pregnancy and breastfeeding. I’ve been injecting it for years and have had two babies. Yes, it may be less effective than some of the others but I guess it depends on your personal situation. I was advised to take it as it wouldn’t affect my depression and anxiety. I have been pretty stable on it but maybe my MS is mild, who knows!
lisa x
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