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Lemtrada (alemtuzumab)

Hello

I was diagnosed with highly active RRMS in July 2015. I was relapsing very regularly in my first year of diagnosis until I was started on Tecfidera. I have been taking Tecfidera now since April of 2016 and it seemed to be okay for the most part but in March of this year I relapsed again.

I had a scan following the relapse which showed more lesions in my brain and spine, and also more activity in a couple of the lesions I already had.

I have been told to continue with my Tecfidera for the moment but have been told I will need to move onto a different/stronger treatment as the Tecfidera isn’t working anymore.

The 2 options suggested are Fingolimod and Lemtrada. I won’t go into it too much as I assume most people know about the different medications available but I have chosen the Lemtrada as the success rate is 90% whilst the Fimgolimod is 50%-70% successful.

I know everyone’s experiences will be completely different but I was wondering if anyone has had the Lemtrada treatment and how they felt it was? Was it rough? Were there any side effects and if so what have you had?

Would you recommend the treatment?

Many thanks in advance.

Hi

Try doing a search on the word Lemtrada. You will find plenty of posts on the subject. (Look out for Katy79, she’s written a lot about her very positive experience with Lemtrada.)

I’ve go no experience of either, but agree with you that choosing the drug with the best relapse reduction rate is a good plan. All drugs have their possible side effects, so balancing the side effects against the potential for the best outcome seems like Lemtrada beats Fingolimod.

You could also have a look at https://shift.ms/ as many of the members have taken Lemtrada. I believe there is also a Facebook site.

Best of luck.

Sue

Hi Connor

I had my first round of Lemtrada in June this year, Previously I had been on Rebif, Tysabri and Fingolimod.

I fully expected the treatment week, and the recovery period, to be long and hard. But I was so lucky - apart from a long boring 5 days in hospital it was absolutely fine and I didn’t really get any of the expected side effects (the rash, feeling like a bus ran over you etc). The biggest issue I found was the steroids - I had had 2 courses of steroids in the 2 months leading up to Lemtrada, then the massive dose they give you during treatment. But, everyone reacts differently to it - there is a really good facebook group called Lemtrada (Alemtuzumab/Campath) UK and Ireland where you will get a really wide range of opinions on people who have gone through 1,2 and 3 rounds of treatment, and people like yourself who are waiting to start. You’re also advised to stay relatively isolated for about 4 weeks after (no public transport, swimming, and even work in some cases - depending on what you do) as standard, the hospital I was at sign you off for 4 weeks.

Depending on which hospital you are at, they are likely to advise you go on a Listeria diet. This can be a bit tricky if you are un-prepared like me, as you cant really have take aways, pre packed sarnies, shellfish, rare meat etc, so I am always getting caught short at work. But I finish the diet this Friday and all the hospitals seem to offer different advice about it - mine seems to be one of the stricter ones, and says to go on it 2 months before treatment starts and stay on it for 4 months after. I think it is standard now that you are treated with medication to try and prevent listeria - yet you still have to do the diet!

I am obviously still in my early days, only 4 months post round 1, I was really quite nervous to start it, but now I have done it I feel relieved. I feel like nothing new MS’y has happened since treatment - and I am just getting on with my life now…some days I even forget I have MS, and I haven’t felt like that for many years. I am very thankful I was offered this treatment and all I can say is - so far so good.

More than happy to answer any questions you have about my personal experience - but as I said about that FB group has helped me out ALOT!

Hello ConorBarnard (and hello Sssue!) I’m nearly 15 months post R2 Lem and am doing well. As Sssue writes, I’ve written a few posts on this board about my experience. I’ve copied the most recent (and detailed) explanation of my decision making process and experience below for easy reference (with apologies in advance for any typos - this was initially written on iphone on the train at the end of a hard gym session - and I’m in the office now and don’t have time to properly proof read!). I’m very happy to answer any questions if you want to drop me a line - on this thread or in private mail. Whilst I can only talk directly to my experience, over the last few years I have come into contact (on line and in real life) with a good number of fellow Lemmies. I was diagnosed in 2016 after an episode of numb toes and a numb groin. The symptoms were mild - to the point where I wondered if they were real - and not at all disabling. When they were at their strongest I completed a 28 mile hike down the Thames without a second thought. They also cleared up quickly with steroids. I did have an episode of vertigo a year earlier but this was diagnosed (and treated) as an inner ear issue at that time. This may have been a first clinical attack - but we’ll never know for sure. However, despite the mild symptoms my initial MRI showed a number of lesions on my brain and spine. A second MRI 3 months later (before treatment) showed one new lesion even though i’d had no further attacks. It was clear to me from this that the symptoms we feel are the tip of the ice berg. People with MS can be accumulating brain damage which they are not aware of. In fact, it has been shown that people with MS have 4x the rate of brain atrophy of “normal” people (ie everyone’s brain shrinks with age, a person with MS’s brain shrinks four times as fast). The less neuro reserve a person has as they get older, the greater the risks of secondary progressive MS (when subclinical (ie silent) lesions can start to be felt as the neuro reserve around them reduces). I say this not to scare you - but because it was a fundamental pillar of my risk/ benefit analysis when it came to choosing my first DMD. First and foremost, I wanted to stop attacks and preserve neuro reserve - and was prepared to accept a degree of risk for that. [Update Note from Kat: Barts Blog have today (23/10) posted on the latest 8 year follow up results on Lem which re-enforce this. Multiple Sclerosis Research: Alemtuzumab 8y outcomes (ECTRIMS 2018)] 1. There are no risk free options for people with MS. Going drug free carries an increased risk of further MS attacks. The stronger the drug, the greater the efficacy for reducing further attacks. But also the greater risk of side effects. 2. No DMDs are risk free. All carry side effects. The difference with Lemtrada is that the side effects can be irreversible. For many of the other drugs when you stop taking the drug the side effects go away. 3. The benefits of Lemtrada over the other drugs are: (A) high level of efficacy in reducing further attacks. This needs to be looked at in the context of the harm potential future attacks could have on your life - on your physical/ mental/ emotional/ cognative well being. On your independence and possibly your family and finances. Just because attacks to date have been mild is no guarantee they stay that way. We all have some ability to recover from attacks but that is also not guaranteed. You just need to read some of the stories on here of the life changing attacks people has suffered out of the blue. (B) Lem is the ONLY drug proven to normalise rates of brain atrophy (so my brain is hopefully now shrinking at the same rate as anyone else’s). So I’m preserving more neural reserve to protect me in old age and act as a buffer if I do have further attacks. (C) doesn’t require on going administration. Two benefits here (I) once it’s done it’s done - you can get on with your life. No need to worry about taking tablets/ injections on holiday etc. (II) more importantly, no need to worry about need to change treatment if you e.g become JCV + (and get increased risk of PMl) (as per gilenya/ techfidera/ Tysabri). And no risk of a rebound reaction whilst you are on “washout” of one treatment to change to another. Very few people seem to be able to tolerate staying on any of the treatments indefinitely. So these, to my mind, are the benefits of Lem. They needed to be weighed against the risks. 1. Infusion reactions- risk of your body not tolerating the infusions. To manage this you are given steroids and anti-histamine to counter any reaction. You are also monitored throughout the infusion and for two hours after each day. I had nothing worse than a rash and mild headache (which went with drinking water and paracetomol) 2. Post infusion infection- as a result of low immunity. To manage this you are asked to go on an anti-listeria diet (much like a pregnancy diet) and given anti-vitals and antibiotics. You are also checked for signs of latent infection before the infusion. I had no issues here. 3. Secondary auto-immune disease. The big, scary risk. About 40% of patients treated will pick up a secondary auto immune disease (most typically a thyroid problem). Most of these conditions are manageable if caught early enough. For this reason you are asked to go for monthly blood and urine tests for four years after your last infusion (5 years total). So far so good for me but it’s early days. On this point, I decided to deal with the auto-immune condition I have today and worry about a second one I may pick up if and when I get it. Hopefully I won’t - the odds are in my favour. [Note from Kat: Barts article also covers updated stats on S.Es over longer term) A final point - the risks are at best the same whenever you elect to take Lemtrada - whether as a first DMD or down the line after trying different drugs and seeing how your disease progresses. However, by taking it early there are greater rewards to be had as there is a greater volume of neuro reserve to protect. Anecdotal evidence also suggests that people with more accumulated damage have a tougher time in receiving the treatment - as the stress the treatment puts on the body can result in pseudo relapses (much the same as when a person with MS is stressed or has a cold). The lighter the existing damage, the less pronounced the pseudo relapse I bounced back quickly from Lem (out running 5km within the week each time- and back to work within two weeks (I wanted to avoid the commuter rush and office bugs whilst my immune system was at its lowest). I’ve had no further relapses and my MS is silent enough for my neuro to describe me as asymptomatic. My MRIs show I have no new lesions and that, now my body is no longer attacking itself, old ones are repairing and are less pronounced. What I don’t know is whether this would be the case had I not had Lem and gone for a different drug or even adopted the no drug approach. What I believe is I have given myself the best chance possible of holding back the brain damage MS can cause - and I’m comfortable with the risks I’ve accepted for that. There is no right or wrong answer for drugs. It is a question of what you are most comfortable with - and what scares you more - side effects or MS. I hope that helps. It is a very personal view of the analysis I went through when deciding on treatment - and you may very well weigh things differently. Good luck!

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p.s. agree that the FB group is a great source of information - of different people’s decision making process, on their personal experiences (good and bad) and on the different protocols used at the different treatment centres I’m Katherine Goulder on the group if you want to say hello!

And I would have taken Campath (Alemtuzumab) as it was known in its earliest days, the first time I heard about it (at a lecture by Dr Alastair Compton in 2002). But it was then in its early trial days, they’d given it to a woman in desperate situation and it worked. From bedridden to walking, it was examples like that which spurred the researchers on and made the recently diagnosed like me want it.

I, unfortunately would never have been a good candidate for Lemtrada. I’ve already had autoimmune thyroid disease (overactive - Graves Disease), which was surgically cured, but I now have an under active thyroid.

But I salute the intrepid Lemtrada users. They’ve managed to overcome their fears of side effects and battle through untoward initial effects. And like Katy, have often written inspiring and supportive reports of their treatment and ongoing health.

Sue

Hi, I also have aggressive RRMS. Previous treatments failed, so had Lemtrada in 2014 and 15…didn’t get third dose of my choice, as uncountable infections and then hyperthyroidism developed within one month of the second infusion. In August time this year, I developed loads of new relapses simultaneously. So chose Ocrelizumab, as it’s recently beetapproved on NHS. Plus I don’t think I’m ready as yet for stem cells. But then, everyone is different in pattern of illness and response to any treatment. Hope it helps. Amr

Oh that’s such a shame. I do hope Ocrelizumab works out for you.

Obviously, that’s what I meant by admiring those of you who’ve taken the risks and taken the opportunity of great relapse reduction rate against the potential horrible side effects.

I admire each and every one of you who have taken the very brave risk of risky drug treatment.

I hope you do well on Ocrevus.

Sue

Thanks Sue, I highly appreciate your encouragement! Cheers