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To Say I've Had Enough Is An Understatement

Just come out of Kings after having my screening for Lemtrada. Ooh wee, so over it. Neverending blood test, I could feel the bruise coming up before she even took the needle out. Had an ECG, chest x-ray, swabs. Did I mention I’m over it?? Speaking to the nursey, the Lemtrada…the side effects. Oh my days the side effects. And no I do not want to effing stay in hospital. Nursey says could stop it up to 50%. But what if it doesn’t, And I did all that for nothing. Also, today was just the screening, so I may not even be suitable for it. Just like the trials I went for, not suitable. What am I suitable for then? Nursey seemed surprised I’ve had no treatment since diagnosis. Oh nursey, you’re telling me. I dunno, I just feel really wound up by it all. Oh, like it’s out of my control. Suddenly the bigger picture is becoming really small

hello hun.

i didnt know what lamtrada is, so i just googled it.

so this tells me you have active rrms, yeh?

I know the side effects are scary…of course they are. but all meds have side effects and i think you need to weigh up how you feel now and whether or not you can carry on how you are now, or if you think trying something that is supposed to help slow down any further demylination, is worth a try.

if it was me, i think i would go ahead. from what i`ve read, you wil be closely monitored for side effects.

i had no treatment to slow my disability progressing, only meds for some of the symptoms.

give it some more thought yeh?

i daresay, you wil receive more replies with support and advice.

good luck chick!

luv Pollxx

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It’s a bore, I know, but a couple of decades ago people like me (and you, I assume) with very active RRMS were basically up filtered word creek without a paddle. The pharmacy cupboard was bare. It’s well-stocked these days (Lemtrada for you and Tysabri for me), and that new set of drug options brings problems of its own, but I reckon that’s still a better sort of problem to have.

I hope that all goes well and that you have a clear round in the screening and can get started. All that extra uncertainty isn’t going to be helping you, and it will be good to move on to a new and, I hope, much more stable phase.

Good luck.

Alison

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If I was in your shoes I’d go for it, there’s many that don’t have the choice. A possible 50% reduction?? Have I read that right?

There’s always if’s buts & maybe’s with MS, you might feel out of control & wound up at the moment …but if the screening goes well & if you took the next step you may well be on the way to regaining some of that control. You’ll never know until you try.

Good luck

Rosina

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Oh, thank you all for your messages. To say I was in a rotten mood when I wrote that… It’s true, 50% is a good percentage. Today just wasn’t my day, in terms of like not being highly irritated by, um, everything. So far out my comfort zone but yeah, it’s true, I am lucky I suppose to be put forward for Lemtrada It’s just sometimes I feel like I’m running out the strength I do desperately need to battle this. And that’s a bitter pill to swallow

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Hello!

Have a read here - it’s more like a 70% reduction and the individual blogs you can find on line are positive.

the side effects are scary but well

known and monitored monthly for 5 years - a far higher level of monitoring than many other MS drugs.

Its such an individual choice, but all the professionals around me were very excited and positive for me. Current thinking is aggressive treatment early to avoid early build up of damage. At my age and situation I had to go for it, but it’s a very individual choice.

best of luck x

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Back in 2001, I applied to go on to the trial for Lemtrada. At that time it was called Campath. I wasn’t suitable, as I was already on Rebif and still am.

Here’s the good bit. I encountered several people who had been on the trial and most had got their lives back. One, who had written himself off, no more work, no point in relationships, had a total remission of his MS and still has.

He met someone, got married, found a great job.

He got his life back.

I’m typing this feeling a bit weepy. You are so, so lucky to have this option. I wish it was available to me. Maybe next year, I do hope so.

I hope you receive the same result. It may seem like the pits now, but as Alison pointed out, back in the late 90s, early 2000s the choices were slim and if the drug worked, then you were lucky.

I was lucky. I can walk and work (with fatigue) but I think that I am finally starting to progress. I’m not sure, as I’ll know next week.

Please don’t worry. In a year all of this will (I hope) seem like a bad memory.

best wishes,

K

I have also met a couple of people who were on the Lemtrada trial (then known as Campath). Both are doing very well and you would not know to look at them that they had MS. One is a single parent, keeping busy looking after the child and one works full time and leads a very busy social life. I believe one of them had some side effects involving her thyroid but that is easily controlled by medication and she said that was easier to cope with than the relapses.

Best wishes, I hope you make a decision soon (and that the tests give the right results so you can go ahead with your preferred treatment) and that whatever you decide works for you

I’m currently on Gilenya (my second treatment) but if that fails for me I would opt for Lemtrada if given the choice. It was mentioned when I last discussed switching treatments with my neuro but we agreed that my MS wasn’t that aggressive at this point and Lemtrada was still in trial.

Tracey x

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Hey girl with a stick. Was u with Pauline on Tuesday morning?

I had my lemtrada screening just after you! (If it was) how strange!

Thosee tests took a while didn’t they? Also 10

bottles of blood!!! Wow!!!

I have my slot for 1st feb :frowning: soooo scared!!( if screening is okay)

its all seeming so real like u said!!

least maybe we will both be doing it together

Danielle x x