Hello, I’ve recently been diagnosed with R.R MS. I have been to neurologist today and he recommends I have Lemtrada treatments, I was wondering if there was any one on here that has had or is going through this that could share their experience with me to help me with my decision? Thanks in advance
Claire x
hi claire
lemtrada is one of the most effective drugs for ms.
usually offered to younger patients with active ms.
there is a lady called katy who actually demanded lemtrada and her neuro was so impressed with her knowledge that he put her on it.
there are scary side effects with all meds so don’t let it put you off.
you will be monitored closely.
what i’m trying to say is grab it with both hands.
good luck
carole x
Hi Claire
I’m due to start Lemtrada next Monday, previously on Plegridy but my Neuro felt my MS was active enough to move me on to a 2nd line DMT. I had a choice between Tysabri and Lemtrada and felt Lemtrada and it’s possible side effects would suit me best.
It is a big decision and one that requires support not just from your HCP’s but family too. Of course there’s no knowing what if any side effects you’ll experience, and you have to commit to five years treatment and testing.
My MS team have been really helpful and I’ve had lots of info provided to help make the decision and to help me explain it to others (including my GP!). My employers are really good and I’m training other managers to cover the more important parts of my role while I’m off work.
I have to say I’m a little apprehensive, but very determined. Potential side effects are less scary than the potential damage a severe relapse could cause.
Oh and re Carole’s comment above - I’ll be 60 later this month so Lemtrada is offered to us oldies too, but I think it’s even more valuable for younger sufferers to take advantage of what’s on offer.
If you’re still unsure, the best advice I could give at this point is gather as much information as possible and speak to your MS nurse, ask if there are discussion appointments offered, try not to dwell on the possible side effects and down side of the treatment. I joined the facebook Lemtrada group but to honest I find the majority of comments to be very negative so mostly I don’t read them. As with a lot of things people are more willing to share bad news than good.
Finally try not to stress, make the decision that suits you and your lifestyle, be brave and stay as well as possible.
I’ll let you know my treatment goes next week of you like.
AngC
Thank you v much for your response and advice! X
Hi thanks so much for responding! Good luck with your treatment xx
Hi Claire
Have a look for posts on here and the Everyday Living forum called Katy79. She has had round one of Lemtrada and is about to go for round two. She writes very well and positively about her treatment.
Also, have a look at https://shift.ms/ There are lots of people on that forum who’ve had Lemtrada.
Good luck with the decision. It’s a brave one, but in your position, I think I’d have gone for it. I actually went to a lecture in 2002 when I’d just been diagnosed when the Campath (at Lemtrada was then called) trials were detailed. I would have done anything to get on it, but it was a very long way away from being licensed.
Sue