Hi! I might not have too much to say to you, but I went through Mavenclad treatment (after some corticoids, it was the first I got) and I am so glad that I did. I only had a headache for two days, but no other side effects and now I don’t feel any MS symptoms other than some tingling in my feet sometimes when I walk a lot in the heat, etc. Through covid I’ve been fine and few months ago I got the vaccine and am fine as well. My two years on the treatment ended in December 2020 and I haventbeen taking anything other than vitamins since. I hope you find the best for you!
Stu this is a lot to take in for anyone of your friends like me never mind even beginning to understand what and how you're feeling and I feel gutted for you. I really don't have any advice for you on the different treatment options but I just wanted to let you know if you need someone to talk to I'm here for you. I'm struggling with depressions and stuff myself these days but if I can help you in anyway you can get me on Twitter . I hope you still have my Handle on it as it hasn't changed in years. I hope to hear from you again soon and I'm so glad to hear for you again even though it's not with such great news. Andy M
Bless you, just officially got diagnosed and although I have been attempting to educate myself for a few years, still a lot for someone who took barely passed high school biology.
Thank you for putting your insights out there! Really appreciate it! I am in a similar situation in that I had Lemtrada in the past(before COVID),but my last MRI showed disease activity. So now I try to figure out what treatment I'll have: kesimpta,ocrevus or 3rd round lemtrada(a big no no for me as well!)... I trust my Doc! I definitely feel the pressure this pandemic is giving. I don't really have an advice to give you,but go one day at a time and keep believing you'll figure it out mate! :)
lemtrada has been great for me. The risks are easily mitigated with regular monitoring. I've been fortunate that I didn't get any serious side effects. Lots of opportunistic infections while the immune system was reconstituting but easily treatable. The dosing schedule is convenient. I did have a relapse this year and I had to have a third dose this week. But I'd definitely recommend it. We take calculated risks whatever medicin we take. In my view the cost benefit ratio is massively in favour of taking lemtrada
Great video Stu. Think I've learnt alot about T and B Cells 😉 Best of luck with your decision & whatever your allowed to go on. Think I've mentioned before to ya on Insta, I also have the JC virus. Been off Tecfidera for a year & half. Just took myself off it. Got fed up with infections. Cheers. 👍
hi you may have already switched meds by now but just wanted to say I did Lemtrada in 2016 and 2017 and had no MRI progression and no relapses until November 2020. I did have cognitive decline in 2018 so I actually stopped working but never had an issue with infections. I have had symptoms start popping back up in 2021 so my new neuro advised Ocrevus, Kesimpta, or Zeposia and like you I have an issue with the B cell depleters so I am leaning heavily towards Zeposia but I see my neuro on October 5 to discuss the MRI I had last week and pick a new med. I did have hyperthyroid issues from Lemtrada but after a year on meds my body corrected itself and I've been off those meds for almost a year. So, overall Lemtrada was nice in that I was fairly stable for about five years but there is monthly blood work and there can be side effects. Thank you for being open and honest on your research and concerns :)
Hi Ashleigh. Thanks for that. My options are down to Ocrevus / Kesimpta and Zeposia too. I think I’m thinking Kesimpta - on neurologist recommendation as if I do get PML post Tysabri then he can stop that easier than the six monthly Ocrevus. Unfortunately- he’s not letting me having Lemtrada or Mavenclad. - my first choices due to my JC virus titre. Thanks for the kind feedback
@@AbitofMS You have to advocate for yourself. Inquire about it. Tecfidera does carry risk of PML, although I don't believe it is very high. Tecfidera is taken twice daily, while Zeposia is taken only once a day. Try for Tecfidera if you can't get Zeposia.
Trying to find out more about how you felt coming off the tysabi. Had to stop tysabi, cause had an enhancement on cerebellum, causing balance and speech issues. I am coming off tysabri, and only 1 week in, having extreme burning pain. I am going to start Ocrevus in about 2 weeks.
Hi there. So sorry to hear that - that sounds horrible. I haven’t come off Tysabri yet - I think I have one more infusion before switching to either Ocrevus / Kesimpta / Zeposia or Ponvory (but not yet licensed)
@@AbitofMS thank you. I will post an update after first Ocrevus infusion. Just got insurances approved, now having to wait the six week wash out period of Tysabri.
Had first Ocrevus infusion yesterday, didn't have any problems with the infusion. That evening I did have some flushing, and got a headache. Had a hard time sleeping from the steroids. So far though everything is okay. Hope all is well with you.
Had 2nd Ocrevus infusion last Wed and everything went well. Did have the flushing for remainder of the day, and a hard time sleeping because of the steroids. So okay so far. Hope all is well with you.
