I'm going on Monday for this infusion called Lemtrada on Monday and was told to expect the worst side effects. Infusion for one week 1st year, than 3 days 2nd year. So if anyone knows anything thing please share because I'm really concerned. Thanks
I start Lemtrada this month. When I was told by my neurologist she wanted to put me on it,I was nervous and scared.She gave me a book on it.When I read all about it and then I wasn’t so scared.
All I can say is drink lots of water, I had my first dose 3 years ago, being set up for OCREVUS, BECAUSE I still feel me body progessing, MRI is clear and it has been for 3 years, Good luck
Tried to read your story but shows “SheenaEydmann is a 67yr. old woman, and was diagnosed with Secondary/Progressive MS in 1981.”
Motherwell North, Lanarkshire, United Kingdom. If you and daughter would update you stories on this site i believe several with MS would benefit greatly. What type of MS did your daughter have and had mri’s showed lesions or were there symptoms that are now completely gone. Early in the disease means? I’m glad your daughter got over MS and that @Lemtrada worked like it did. 🙂 Had your daughter lost the ability to run as many with MS do then regained it after Lemtrada?
My daughter had the complete course of Lemtrada two years ago. She now says she doesn't think of MS at all and feels really great. She had no side effects. She was in the early stages of MS though so maybe that makes a difference because she hadn't had any disease modifying drugs. She is now back running 10k races, she lives in Australia and copes very well with the heat. Hope you have such a positive outcome.
I've been to two patient education programs on lemtrada. It's kind of like a chemical stem cell transplant. You are wiping your immune system with hopes that the reset will spawn healthy non-self-attacking T and B cells. Have you looked on their website to see if they an event near you? I would also suggest calling their nursing support staff and asking all your questions. The few patient advocates I listened to said their immediate side effects were a bit run down feeling and headaches during the infusions (speak up because they got meds for these). Then they laid low for a few months because of higher risk of picking up an infection. One woman told us she got thrush in her mouth briefly. There is definitely a higher risk profile with this drug, but the potential benefits are way up there too. I hope you are able to find local support and use lemtrada's support team to educate yourself, and to feel safe and comfortable. Good luck, friend!
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