Deciding whether to go onto a DMT? I've put this video together to go through how my symptoms changed after having Lemtrada. Happy Christmas everyone, keep well 🎄
The side effects are not always great but if you can get through them it’s much better than trying to get through a relapse without them. Another great videos Laura thanks 😊
Absolutely agreed Lisa! Relapse free periods are something that I do not take for granted in this unpredictable disease, as I'm sure do many others. Just wanted a chance to say thank you for all your support on this channel and also thank you for your beautiful hand made gift, it sits proudly in our living room and Ada loves this as her nighttime throw 💜. Happy New year to you and wishing you a healthy happy 2024 🎉✨💚
Thank you for addressing this and Merry Christmas to you as well!! Hope it’s as fabulous as you are! Have you done any DMTs following Lemtrada or have you been in a situation since your treatment finished where you needed steroids? I’m under the impression Lemtrada only works for about ten years and would love to know if you’re considering any other treatments to keep the disease at bay or if it’s an option to do the Lemtrada again? Thank you again for your help to our community! 🌺
Hi and Happy Christmas to you. I've not had any other DMT's apart from Lemtrada. When I went into the trial in 2009 I signed a form which said that I wouldn't enter other trials because it might have jeopardised the research of the drug I was taking. I have been given steroids twice since starting Lemtrada and that was for my optic neuritis as I had a pretty bad flare up. Now though, I just get on without treatment if I get optic neuritis as I hate the side effects of the steroids! At the moment I am completely medication free, this is by choice but also because my MS team advised that I was stable enough not to need any unless they found new or active lesions - I did a video on this a while back. Basically now my MS team are concentrating on SELs (Slowly expanding lesions) if I have these then I would go onto have more Lemtrada Treatment. I hope that helps to answer your questions.
Thank you for the detailed response! I didn’t see the video you’re referring to. Whenever you get a chance, would you be able to provide the link in a comment below? I’d love to watch it! 😊 So there isn’t a ten year release with Lemtrada allowing you to try something else after their treatment is no longer effective? That’s so wild! Sounds like you’re not at that point anyway, which is wonderful. It’s so nice you have a team to help you through all of this. 💝 I don’t have access to anything like that, unfortunately. Hope you are having a fabulous Christmas and thanks again!
How come you don't have help? So now if I wanted to go onto another DMT I could, it was only whilst I was on the trial that I couldn't. I guess being on a trial is a little different to actually making a choice about what DMT you decide to take. I don't actually know the link to the video, I had a look and I think it was about SELs... I can't remember now!
I live in a rural area and it takes about 5 months just to get in to see a neurologist but there definitely isn’t any sort of team mentality here. I’m trying to get in to see a new doc and am hoping it goes well but it’s several months away regardless of them knowing I’m in distress. It’s very defeating but you are a ray of hope and I’m so happy you are working with a fabulous team! Thank you for the info; it’s helpful to know you’d get on Lemtrada again if that’s what your scans indicated was the optimal route. Best wishes in the New Year and hoping it brings you lots of joy and healing!
Hi, have you heard of low dose naltraxone (LDN)? It's not a normal ms drug but immune system modifier. I'm starting it tonight. There is lots of good results for different autoimmune conditions including ms
Deciding whether to go onto a DMT? I've put this video together to go through how my symptoms changed after having Lemtrada. Happy Christmas everyone, keep well 🎄
Hi , have you seen youtuber Emily Penton talk about her improvements from MS ?.
Learn so much from these videos
Thanks, glad it's informative 😊
Well said. You're a great communicator
Thanks Andrew, I appreciate that. I hope you're keeping well
The side effects are not always great but if you can get through them it’s much better than trying to get through a relapse without them. Another great videos Laura thanks 😊
Absolutely agreed Lisa! Relapse free periods are something that I do not take for granted in this unpredictable disease, as I'm sure do many others.
Just wanted a chance to say thank you for all your support on this channel and also thank you for your beautiful hand made gift, it sits proudly in our living room and Ada loves this as her nighttime throw 💜. Happy New year to you and wishing you a healthy happy 2024 🎉✨💚
Thank you for addressing this and Merry Christmas to you as well!! Hope it’s as fabulous as you are! Have you done any DMTs following Lemtrada or have you been in a situation since your treatment finished where you needed steroids? I’m under the impression Lemtrada only works for about ten years and would love to know if you’re considering any other treatments to keep the disease at bay or if it’s an option to do the Lemtrada again?
Thank you again for your help to our community! 🌺
Hi and Happy Christmas to you. I've not had any other DMT's apart from Lemtrada. When I went into the trial in 2009 I signed a form which said that I wouldn't enter other trials because it might have jeopardised the research of the drug I was taking. I have been given steroids twice since starting Lemtrada and that was for my optic neuritis as I had a pretty bad flare up. Now though, I just get on without treatment if I get optic neuritis as I hate the side effects of the steroids!
At the moment I am completely medication free, this is by choice but also because my MS team advised that I was stable enough not to need any unless they found new or active lesions - I did a video on this a while back. Basically now my MS team are concentrating on SELs (Slowly expanding lesions) if I have these then I would go onto have more Lemtrada Treatment. I hope that helps to answer your questions.
Thank you for the detailed response! I didn’t see the video you’re referring to. Whenever you get a chance, would you be able to provide the link in a comment below? I’d love to watch it! 😊 So there isn’t a ten year release with Lemtrada allowing you to try something else after their treatment is no longer effective? That’s so wild! Sounds like you’re not at that point anyway, which is wonderful. It’s so nice you have a team to help you through all of this. 💝 I don’t have access to anything like that, unfortunately.
Hope you are having a fabulous Christmas and thanks again!
How come you don't have help?
So now if I wanted to go onto another DMT I could, it was only whilst I was on the trial that I couldn't. I guess being on a trial is a little different to actually making a choice about what DMT you decide to take. I don't actually know the link to the video, I had a look and I think it was about SELs... I can't remember now!
I live in a rural area and it takes about 5 months just to get in to see a neurologist but there definitely isn’t any sort of team mentality here. I’m trying to get in to see a new doc and am hoping it goes well but it’s several months away regardless of them knowing I’m in distress. It’s very defeating but you are a ray of hope and I’m so happy you are working with a fabulous team! Thank you for the info; it’s helpful to know you’d get on Lemtrada again if that’s what your scans indicated was the optimal route.
Best wishes in the New Year and hoping it brings you lots of joy and healing!
Hi, have you heard of low dose naltraxone (LDN)?
It's not a normal ms drug but immune system modifier.
I'm starting it tonight. There is lots of good results for different autoimmune conditions including ms
Hi, no I haven't, good luck for you though 🤞
@@lauraironstalksms thank you very much
What other medications have you tried
No other medications
You are beautiful