ive had ms for 16 years or longer. had various ms drugs. at present im on tecfidera. my ms doctor has seem my mri scan and given me the choice of 4 drugs as the tecfidera seems to less useful now. ive got down to 2 i am interested in lemtrada or mavencllad ive spoken to my ms nurse. i was drawn to one of these but now the clinice i go to lost a patient with listeria leukemia. when his immune system was very low. its a big decision and would appreciate any help .advice or personal experiences of these two drugs,THANK-YOU IN ADVANCE
I can only semi comment on Lemtrada - I am due in for round 1 on 25th June. You have to go on a listeria diet at least 4 months prior to treatment, but now a lot of hospitals now give you a super strong antibiotic to prevent listeria infection post treatment (i think you’re on that for about 4 months post treatment) - luckily my hospital do give this.
Its really, as with any drug, is weighing up risk and benefit. I cannot wait to get it! I want to hit this as hard as I can (I was diagnosed 10 odd years ago and have been on REBIF, Tysabri and fingolimod) Had a huge relapse after having a baby last year and was offered lemtrada then.
I realise I am not much help - just wanted to respond. If I can answer any other questions, I will, but as I said - I havent started yet!
Good luck with your decision.
I don’t know anything about Mavenclad I’m afraid but I am in the middle of receiving Lemtrada, I’ve had the first round and six months away from the second, so I might be able to help answer some of your questions.
I noticed on your other thread you mentioned whether you’d need to stay in hospital and about being bored. I was treated as an outpatient, which I believe is the case with Lemtrada most of the time now. However, the days are very long and boring. It seems to vary between hospitals but all five of my infusion days followed the same pattern - 1 hour steroids, 4 hours lemtrada, 2 hours flush, 1 extra hour for monitoring, so if it’s the option you go with, be prepared to spend most of your day there!
I was very lucky during the infusions and had very few side effects, just feeling generally wiped out and had a rash/hives the last few days. It took a couple of weeks for me to get back to ‘normal’ and since then everything has been fine, including with the monthly blood tests but it’s often later that the long-term side effects show up, so only time will tell.
I’m not sure about listeria lukemia? The only thing that has been mentioned to me in relation to listeria is listeria meningitis. But hayley894 is right, it’s a very small risk and your given antibiotics for at least four weeks to minimise the chance and need to follow a diet for a minimum of three months - this might be extended depending on your monthly blood results.
Any other questions I might be able to help with, let me know
I received my first round of Lemtrada in February.
I didn’t experience many reactions whilst having the infusion, just a headache fatigue and some flu like symptoms.
Since then, I feel around a 40% improvement, the nausea and the dizziness is still there but my balance issues seem greatly improved.
Feel free to ask me any questions that you have