@BronwynMogridge

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BronwynMogridge

LEMTRADA TREATMENT

Hi All I was diagnosed with relapsing remitting MS in 2013, the neurological consultant at the disease modifying clinic I have gone to has suggested I do the Lemtrada treatment. At first it sounded like great but once researching it and seeing the severe side effects you could get it has scared me a lot to go this route. Has anyone done this treatment and if so, what is your opinion on it and did the side affects scare you too? Thanks Bronwyn

Stumbler

@Stumbler

@bronwynmogridge , there has been a lot of conversation over the last few months about this treatment. The consensus of opinion is that the side effects of Lemtrada become insignificant when you consider what MS can do to you. It has been described as, "the closest thing to a cure, without calling it a cure" The following link will take you to most of those conversations:- https://shift.ms/category/treatment/lemtrada

Harconan

@Harconan

I have had Lemtrada last year the worst sideffects I had was the week of treatment. I slept almost the whole 8 hrs of treatment then I had diahera. However the weeks post treatment I started feeling better. You will have to watch getting sick because it lowers immune system On all that I haven't had any new lesions and the doc has said some of them have reduced in size. My doc told me I have advanced RRMS I was having relapses every 3 to 6 months. I have been relapse free for almost a year now. I get it again this July. I'm happy with the decision made and hope this helps you. Ryan

Ashory

@Ashory

I'd encourage you to read a thread I started recently called "treatment options" I am considering Lemtrada and some awesome people have weighed in on it there.

US-Emma

@US-Emma

I had Lemtrada in 2014 & had had 2 courses (5 days, then no meds for 365 days, then 3 days of meds). You can read about it on a blog I kept of year one: Lemtrada.blogspot.com Side effects I had: During first infusion 1 mild headache on day 1, slightly elevated BP on day 4 when steroid dose changed. After 1st infusion: from weeks 3-12 I felt very tired, like having the flu or being pregnant. I think very few people get this, it is hard to capture. Tracy & Sandwich did not have this, I know others who have. During second infusion- no side effects After second infusion- the fatigue period repeated. Benefits: I am fully ambulatory now (was previously home bound due to pain & fatigue) No pain Cognition Improvements No fatigue Sleep improvement, don't take any sleep meds I drive now Eye problem resolved No swallowing problems Work full time now Able to cook, clean and work all in the same day with no more fatigue than a "normal person" Regularly enjoy hikes, rafting, ropes courses, Ziplining, basically any activity that suits me! Basically I feel like a normal, active, healthy 42 year old :) And for me that's a major win! I hope you find your answers and are at ie ace with your decision. Take care, Em

TracyD

@TracyD

@us-emma YAY long time no see lady, glad to hear you're still doing great. I'm 19 days away from round 2 now and as always I'm doing brilliantly with no MS symptoms remaining :-) xxx

Robaczek1

@Robaczek1

Good luck to all of us????

US-Emma

@US-Emma

July for me. They are requiring 2 vaccines: for shingles & Pneumonia. I think this is silly. My MS clinic is not a big fan of Lem- the lead guy there prefers we are all disabled I guess... So they put a lot of barriers up. But I will gladly jump through hoops for Lem! Good feedback on the rash @tracyd I did post a comment to your blog a few weeks ago but I guess you didn't see it.

Robaczek1

@Robaczek1

Thanks all for advice and support i love this page?my worry is about my kidney and bleeding afte the treatment is scary

Robaczek1

@Robaczek1

Omg thank you @sandwich very much;)))))((u aer very kind.

Redman

@Redman

Would love to try it but I think it costs the health service £60,000 a pop...

Stumbler

@Stumbler

@redman , you're right about the cost, but if it sounds right to you, ask for it. It's a short term expense for the NHS, but will potentially save money for the foreseeable future by keeping you healthy.......

Redman

@Redman

@Stumbler will make enquiries but my neuro did say that I wasn't at that stage yet - whatever that stage is????

Stumbler

@Stumbler

@redman , the latest medical strategy is to treat MS fast and aggressively. It is progressive and degenerative, so why wait until you accumulate more damage. It seems a reasonable argument for treatment to me. :wink:

TracyD

@TracyD

@Redman Is at 'that' stage when you're struggling to walk or see or can't work any more and on disability? I'm sorry but in my opinion that's quite frankly bullshit! They don't get to choose what damage the lesions get to do before youb'deserve' it. Ask your Neurologist to either progress it or refer you to an MS specialist neurologist who knows how vital the treatment is to give you the best chance of NEVER needing to be 'that bad' If you need someone to help you in how to deal with that drop me a PM I'm happy to share my contact details with you xx

Redman

@Redman

@tracyd New to this forum and not sure how to private message but just followed you on twitter. Thanks for the advice and support any info will be greatly appreciated...

TracyD

@TracyD

@redman Friend request accepted you can now send me PM's xx