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New Lemtrada risks

What an absolute bugger. I always thought it was a shame that I was diagnosed too early to be considered for Lemtrada. Now I feel rather relieved that I didn’t get the drug. I already have possible autoimmune hepatitis, so no doubt I’d have experienced full on AI liver disease.

But truly worrying for people on the drug; scary for anyone who is now starting on it having failed on two other drugs.

Isn’t MS a sod. I know that many people with progressive disease are rather envious of the DMDs available to those with the RR variant, but potential serious side effects are the trade off. You’re damned if you take the risk and damned if you don’t/can’t.

Sue

With the potential side-effects, surely it should be withdrawn immediately ?

Was it not tested before becoming available?

It was tested and tested prior to approval. The first person with MS treated with Campath was in 1991. There were amazing success stories after it was used as an absolute ‘last ditch treatment’. Such that it went on to many many trials. This page from Cambridge Neuroimmunology details the history of the drug: Alemtuzumab (Lemtrada) - Cambridge Neuroimmunology

It’s very sad to know that after so many trials, and so many success stories, it’s now showing such severe side effects.

Sue

Are these recent problems with Lemtrada the result of someone taking the drug over a very long period of time - it seems odd that it’s only recently after the drug being licensed for almost 30 years that these serious issues have come to the fore. Concerns will probably be raised about the long-term safety of other DMD’s ??

I’ll admit I’m worried , I’ve just finished round 2 of Lemtrada in November. Although I saw my MS nurse 2 weeks ago and she didn’t seem overly concerned.

June

Hi June1971

How have you found the treatment of lemtrada? I have been recently diagnosed and already had two relapses in the space of 5 months. The consultant neurologist gave me an option of either copaxane or lemtrada, still unsure which one to go for.

That’s a bizarre choice.

Copaxone is a level one drug. It’s an old DMD and has a much lower average relapse reduction rate.

Lemtrada is a level two drug. In addition to being a more serious drug, it’s recently had its use restricted while a review takes place into its side effects.

So theoretically, your neurologist shouldn’t be able to give you Lemtrada right now.

Have a look at the article at the top of this thread, link posted by tingly_badger plus https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

Sue

Hi Lab,

Apart from feeling completely wiped out after the infusions themselves I’ve been doing well.

No relapses for two years and no change on the mri scans , overall I’m feeling pretty stable, with no side effects so far.

My MS was very aggressive and I was quite rapidly going downhill, so I wanted to hit it hard, I think that Lemtrada does that.

For me the list of possible side effects was scary, but so was MS progression.

It does seem odd you’ve been offered either Copaxone or Lemtrada, I thought Copaxone was for milder MS, Lemtrada is more heavy duty.

June

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Hi June/Ssssue

Thanks for the replies
I’m so happy for you that the treatment has worked well. It’s quite scary isn’t it know it has some really bad side effects, though my neurologist did say that if I did decide to go onto this then I would be monitored closely and any side effects can be easily treated and managed. It’s quite positive that it’s working for a lot of people.

My only worry is that with copaxone I may still get relapses because my MS seems quite active. Since my diagnosis, I have been able to make links to other symptoms of the past that are likely to have been MS related but I thought nothing of them at the time.

I’m just thinking long term, anything to slow down the progress of the disease. It seems a risk either way:

Side effects of the lemtrada
Or to be on copaxone and risk another relapse

MS is so unpredictable, it has been hard for me coming to terms with the diagnosis because it happened so fast. It’s just a case of living life to the fullest and dealing with whatever comes my way I guess. That’s all we can do can’t we.

Lab, what does your neurologist think would be the better choice for you? He/she knows your situation and your MS much better than any of us, and also has the benefit of many years of specialist training and experience to draw upon. Of course these things come down to personal choice (within the range of what is offered) but you are entitled to a considered professional view on the matter in order to help you decide. If you have not yet had a good discussion about pros and cons and (specifically) what the neurologist thinks is the best balance of risks and benefit for you, please be polite but firm about insisting that happens before you decide anything. Those are two very different drugs, with different efficacy and safety profiles. You need help with that one, and that is what your neurologist is for.

(For what it’s worth, I was on Avonex for 10 years and have been on Tysabri for the past 8. If I had started Tysabri a year or two earlier, I would maybe have dodged the relapse bullets that finally brought the scales down in favour of Tysabri - but not before they affected my mobility permanently. I tell you this to illustrate that there are no right answers in this game, of course, and it’s no use peering down the retrospectoscope in search of them! The best thing to do is to make as well-informed a decision as you can, and accept that that a well-grounded decision is a good decision, regardless of how things turn out.)

Alison

June, I think you’re on a great drug. Even if its risks are a little bit more pointy than had previously been understood, it is still protecting you from the massive and terrifying risks of uncontrolled RRMS. I think you’ve made a great choice, and I hope that it really stops your MS in its tracks. It is one of the very few things that can do that.

Alison

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Well said Alison. I agree with everything she said.

Sue

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My neurologist thinks the lemtrada is the one I should go for as it is supposed to be more effective. We looked at pros and cons of both. It’s just about weighing it up now and deciding which one I should go for.

I guess only time will tell…which ever decision I make there will always be uncertainty whether I have another relapse or not. MS is just so unpredictable isn’t it.

Lemtrada side effects are putting me off if I’m being honest but then again sometimes you have to outweigh the benefits against the negatives.

thanks for all your replies. I’m new here and found it so nice to be part of a group, makes you feel like you’re not alone in your journey of experiences with the battle of MS.

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If you’re on Facebook there’s a few Lemtrada support groups on there. I know I found it really helpful talking to others who had already been through the treatment. Or check out Dr Aaron Bosters YouTube videos on Lemtrada…actually I’d recommended all of his videos.

June

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Thanks June you’re a star for pointing me the right direction. I feel I need to do my research before I rush into any decision :slight_smile:

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I am glad that you have had a clear steer from the neurologist. My general approach ot these things is to go for what the experts advise, unless I have a better idea!

All risk if frightening, and the unknown ones particularly so. Naturally, the risks of medication loom large in your thoughts. But please do remember also to take account of the large and frightening risks of what uncontrolled aggressive MS can do to you. It is a bad place to go in your head, I know, but it is important to look the MS beast in the eye when deciding how best to deal with it. It is a brutal enemy.

Good luck with whatever you decide.

Alison