Last reply 1 year ago
Lemtrada? ?

I am recently diagnosed with rrms and got a appointment to discuss medication on Thursday they have said they want me to look into tysabri or lemtrada…. I’m swaying more towards lemtrada but it seems really scary just wondered if anyone has any tips/advice and how people are doing post lemtrada? ?

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gates1989
1 year ago

Hi @leanne12, I had my first round of Lemtrada in January. I found the infusions perfectly fine, I’m doing ok since too! however I know @tracyd has a blog on her experience which goes in to a lot of detail and she’s has amazing results with it! good luck with whatever you choose! X


tracyd
1 year ago

Thanks for the tag sweetie.

http://www.tracyslemtradajourney.co.uk

It’s been going for over 2 years now and details everything treatment and life wise since day one and I’m now in week 47 after round 2 🙂


lozwo
1 year ago

After a terrible amount of agonizing I went with Lemtrada ! Am coming up to my second round in May 😬😬😬. Was pretty sick the week after infusions. Nausea and vomiting, heart palpitations (from the steroids) and worsening of current symptoms. All of this cleared up however I did catch a nasty cold soon after which my body really struggled with due to low immune system.

A year on I haven’t had any new relapses and no new lesions.


doubleo7hud
1 year ago

Iv got my appointment to disguss tomorrow I’m going to try go for lemtrada too if I get to choose that is. If anyone could give me some tips on questions to ask too that would be much appreciated thank you please 👍


lilbird
1 year ago

Hi @leanne12 all you can do really is learn as much about each treatment as you can. There’s loads of info on this site if you use the search bar. I chose Lemtrada & I’m nearly a week post r2 now, so far so good. I’m doing well & hopeful that I’ve done enough to stop it in its tracks. It is a difficult decision but all you can do is learn as much as you can about them & work out what suits you best.

@doubleo7hud same again really do lots of reading about each of the treatments you are considering so you know a bit about them before you go that way you’ll be able to think of better questions while you’re with the experts instead of after you leave 😉


daniel2025
1 year ago

As you are from Hartlepool same as me you will obviously be a patient at James cook hospital.

Whether you get Tysabri would depend on the results of a blood test that needs to be done the test goes to Denmark.

I know from personal experience that they don’t recommend these treatments unless your ms is quite active. To be honest these are really expensive drugs.

The doctors in James cook and the ms nurses are fantastic and know there stuff listen to the advice given and take your treatment.

I ended up with lemtrada because I am jv positive which meant the Tysabri was too risky but I am really happy with the lemtrada.

If you have any questions feel free to message me.


leanne12
1 year ago

Thanks for all your comments /advice yes I am at James Cook tomorrow so hopefully will get all my answers then


kittyb
1 year ago

I have just been diagnosed with MS, but I also have Behcets disease (another autoimmune disease). They are talking about Lemtrada but the potential side effects are worrying me, such as the thyroid disease. Has anyone developed another of the potential autoimmune disorders as a result of being on Lemtrada?


stumbler
1 year ago

Hi @kittyb and welcome.

When you compare the threat of a thyroid condition, manageable with a daily pill, against the potential disabling threats from MS, then there starts to be little competition.

But, I would recommend reading @tracyd ‘s blog, mentioned above, for a no holds barred view of Lemtrada.


tracyd
1 year ago

Thanks for the tag sweetie.

@kittyb – here’s the blog link, it pretty much details the last 2 years of my life with Lemtrada ….. I don’t regret it for a moment xxx

http://www.tracyslemtradajourney.co.uk


lilbird
1 year ago

Hey @doubleo7hud how’d you get on?


doubleo7hud
1 year ago

Ey up @lilbird (lil 🐦) thanks fer asking lass. eeee ba gum (without a finger up yer bum, unless yer like that then each to there own but not fer me thanks) faith in humanity outside of shift ms has been restored, doc was awsome I did not even have to ask most of me questions I had, he answered them himself before I had chance evrything is on the menu for me I can pick what I want from the list I was ready for war tbh a polite one odv I got the opposite. Lemtrada here we come I think after changing my mind this morning I think I will be heading down that path again now. Just gonna do a little more swatting up before I call in the air strike on the utter [email protected] that is ms. Then jobs a good en for a good few years I hope. I don’t think the doc could mention lemtrada tho so I helped him out a little. He seemed happy with me swaying towards it even did a little smile type thing. Now to read Tracy’s blog and do some swatting up…….

Oh I nearly forgot I’m now a official MSdebator(tm) trademarked its all done and dusted and now on paper even managed to avoid another lumbar puncture swapped it for a blood test instead 😂


lilbird
1 year ago

Aw.. you sent me a cute lil bird 😊 That’s great news @doubleo7hud everything’s so much easier with a dr who’s on the same page! Time for some serious swatting 😉 Tracy’s blog is a great place to start, informative & good for a giggle. Oh & welcome to the MS club 🙂


doubleo7hud
1 year ago

Tar muchly


daniel2025
1 year ago

How did things go in your appointment?


katy79
1 year ago

Hello (possible) future lemmies,

Just wanted to point you in the direction of the lemtrada, alemtuzumab (campath) treatment of MS in U.K and Ireland Facebook group if you haven’t found it. Group has several thousand past, present and possible future lemmies swapping stories and advice. Good place to get a spread of experiences (good and bad), find out about different protocols in different treatment centres and touch base with people who will be under goingvtreatment at the same time as you to cheer each other on and swap photos of “the rash”.

It’s a closed group – just message the admin and explain your interest. A number of us from on here are on there (including the (in)famous @tracyd).

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