Hi, Ive been to see the nurse regarding DMD’s. She has shown me all the options and given me the info I need to make an informed decision. Has any body any experience of Lemtrada,( the infusion 12 months apart)? It seems like an effective drug but the process and side effects are a bit scary. x
i would recommend that you conduct some impartial, online research of all your options, especially if your nurse provided you only with the glossy brochures which come straight from the pharmaceutical companies.
For me, Tecfidera works well; easy / no side effects and a simple twice daily pill which i take with my vitamins!
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I would suggest that you put Lemtrada into the search box on here - lots of people have discussed their Lemtrada experiences. Also, you might want to search for Cladribine - this is similar to Lemtrada (a small number of treatments - the end of relapses - some improvement of symptoms) but without most of the scary side effects.
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My MS Dr recommended I start on Tecfidera as is what the call 2nd line DMD. I asked about Lemtrada and he said I could go with it but to try Tec first which I did and have found suits me. Just get the odd hot flush.
Good luck with your chosen treatment.
Trev
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But doesn’t Tecfidera just slow down the rate at which you deteriorate? Whereas Lemtrada (and Cladribine) have the potential to stop all MS deterioration, and for people to see improvement in their symptoms. I don’t understand why any neurologists are prescribing Tecfidera, Gilenya or Tysabri anymore.
It seems to me everyone is choosing between stopping their MS and slowing down their MS. Why would anyway choose the slowing down option?
Personally, I think that if you have very highly active RRMS and are fairly recently diagnosed, ie have had MS for only a few years and are not badly disabled by it, then if you’re offered Lemtrada, I’d grab it with both hands.
But, if you are having perhaps one or two relatively mild, and resolving MS relapses per year, then go for Tecfidera. Or if you’ve had MS for quite a long time and/or are fairly disabled (and that disability is considered permanent), then go for a less risky DMD.
The reason for this is that the potential side effects of Lemtrada are really fairly serious. Yes, there’s the possibility it may cure your MS, but there’s also the possibility of very serious side effects, among them, secondary auto-immune diseases (ie swapping one AI disease for another), worsening of disability, death (this is really only a faint possibility of course, but still), etc, etc. It seems most effective in the early years of MS, when there’s not been years of demyelination and nerve damage.
Meanwhile, if you try Tecfidera but find you are still relapsing, or that the side effects are too bad, then you still have the possibility of Lemtrada or HSCT or indeed Cladribine. Or indeed Tysabri. Tecfidera has a very short half life which means that unless you are unlucky, it leaves your system very quickly and leaves no side effects behind. It’s only the unlucky few who have their lymphocytes depleted that have their options as to DMDs limited while the lymphocytes recover.
Just my opinion.
Sue
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But I had mildish MS for years - I probably would have gone on Tecfidera. I did go on Tysabri for four years. I’m quite badly disabled now. The problem with taking one of the less effective drugs is that there can be lots of damage being done under the surface while a person is taking them that Lemtrada or Cladribine would stop.
There are lots of side effects associated with the drugs that don’t work so well - some of them very serious (Tysabri and PML being a great case in point). I stand by my assertion that everyone should take one of the drugs that stop the disease, rather than one of the ones that slow it down.
Thanks for that, its a difficult decision x
Truth is, Cladribine is as effective as Lemtrada but without most of the scary side effects. But the only place where you can get it is the Royal London and you have to be referred to one of the doctors at Barts to get given it. I’ve done this but I know most people won’t be ready to.
Hi Sewingchick
As you know, I totally support your decision to take Cladribine, but as you say, it’s only available in the Royal London. This makes it almost impossible for many people with MS to access. And when you factor in getting a referral to Barts in addition to the travelling to London, only a few people are going to be able to get it.
I agree with you that it should be available for more people with MS, but there’s not much point in telling people to take Cladribine when at the present time they may have almost no chance of getting it.
Keep telling us about your journey on the drug, and keep mentioning it, just keep in mind that it is not accessible at the present time for most people.
Plus don’t forget that it doesn’t work for 100% of people. What I’ve read is that about 50% of people treated with Cladribine show no disease activity after two years. This is an awesome statistic. But what about the people it doesn’t work for?
Sue
Hi,
Iv had MS for 12 yrs and have only just been offered DMD’s (I know!)
Iv have RRMS which went completely silent during my pregnancies but has come back to bite me in the ass now!
They have suggested Copaxone and Tecfidera
Neither sound like that have amazing success rates and some of the side effects are a little scary.
Honestly, due to my lifestyle the IV drugs are not going to work (2 young kids at home on my own)
so these are my two options.
Has anyone been taking these and can they tell me what they are really like rather than the pharmacy glossy mag info.
TIA
x
Tecfidera seems to me to have the absolute best success rate of any drug out there, with few, mild side effects which are short lived.
Although i am intrigued to read in other posts above, the words ‘Lemtrada’ and ‘cure’ in close relation to each other. Is this precise?
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I’ve been on Tecfidera for 12 months and it’s gone very well - no relapses. The side effects were short lived for me. I still get the odd flush or tingling sensations on my ears/neck and arms but it was easy to cope with…I ignored it (it passes in a short time anyway), others took aspirin I believe or antihistamines. I have had a problem with my blood results with low lymphocyte levels but I’m being monitored and having monthly blood tests. Tecfidera was one of my choices Lemtrada the other but my neurology said Lemtrada wasn’t available as a 1st line dmd for me as my ms has been slowly progressing. Good luck with your choice. Sharon x
Im on my 4th day of Lemtrada infusion 5 days year 1 3 days year 2 its not a cure its to stop or slow down the progression in rrms, but the damage done is not repairable.
Paolo, I too am on Tecfidera and like you it seems to suit me.
Phil C good luck with your treatment and I hope it slows down the MS for you.
Trev
I was diagnosed in June 2016 after nothing worse that a few weeks numb toes. Whilst my MS symptoms can currently be described as mild I don’t believe there is such a thing as mild MS - and wanted to do what I could to stop myself from finding out what less mild symptoms felt like. I therefore wanted the most effective drugs available for a first line treatment and received round one of lemtrada in August 2016. The infusions themselves were totally fine. I had a rash for a couple of days but antihistamines dealt with that. Main issue was the bored one - but breaking bad on Netflix dealt with that! So no bad I fusion reactions. I’m also three months post now and am through the worst of the infection risks that arise from having a depleted immune system. It has been a bit dull being on a pregnancy style diet for the last three months, but I’m now back on runny eggs and dirty cheese (delicious!) and have had nothing worse than a cold. For information, I was back at work full time and the gym and out running within two weeks of the infusions. It will be a few years yet before I know whether I’ve dodged all the longer term side effects (thyroid problems etc) - but fingers crossed. The monthly blood monitoring means issues should be spotted quickly so they can be managed. These scare me less than MS. I’m feeling bright and well and healthy - and the latest long term trial results (showing the treatment is not only effective in reducing relapse rates but also normalises brain atrophy, can help improve existing damage and start to reverse disability and delay conversion to SPMS) make me optimistic I’ve given myself the best possible chance of staying this way.
Good of luck with your choice. I’m very happy to help answer any questions from my own experience. Other resources I’ve found useful are David’s campath journey (blog from a chap on the original trial 12 years ago - doing well), Tracy’s lemtrada journey (very detailed blog from a lady who has just had round 2 and is doing well), lemtrada (alemtuzumab) treatment for MS in the UK Facebook group (good for getting a good cross section of people’s experiences from different hospitals in the UK) and Shift MS (another Uk MS forum. There are a number of lemmies on there and lots of helpful threads)
k x
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Hi all, I’m currently on tysabri and have been for nearly four years… I’m jcv negative but as I worry immensely about pml risk I’m considering coming off tysabri and moving back to something like copaxone or similar. Does anyone know the process of coming of tysabri, is it adviseable to wean yourself of ie have infusion every two months or something instead of monthly to get your body used to it? As I’ve heard you can relapse if one off it or the rebound effect.
any help much appreciated
Sharon
Hi Sharon
I know it’s your own decision, and if you’re feeling very stressed by the fear of PML it can impact on you negatively, but to me it sounds a bit bonkers to come off Tysabri when you’re JCV negative. (I really don’t want to offend you by saying that, please don’t take offence!)
Have you spoken to your neurologist or the infusion nurses about your fear? Is there any way they could keep testing your JCV status maybe more frequently than at present?
Even if you became JCV+, no one gets PML until they’ve been + for at least 2 years, so you’d have plenty of time to come off the drug if necessary.
Have you heard that people often have a relapse when they stop Tysabri? I believe I have heard that.
Obviously something like Copaxone is the lowest possible risk but also the lowest protection against relapses (about 30% as opposed to 70% for Tysabri).
If you are determined to stop Tysabri, then of course you should do so, but talk to your infusion nurses about how to stop and whether you can go straight from one drug to the next to avoid rebound relapses.
Best of luck with it.
Sue
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hi ssssue
thanks for your reassurance ref pml, that really helps and I didn’t realise that you had to jcv + for 2 years or so as I’ve not seen that anywhere… is that common knowledge because it certainly would settle my nerves if this is the case! It’s soo hard to know which way to turn for the best with treatments, in now seeing my nuero in December so i can chat in detail with him then, but it’s always good to go to these appointments fully knowledgeable as we are the experts after all as. Hope you are well. Sharon x
Hi Sharon
Have a look at Understand your risk of PML with Tysabri I reckon it’s something you need to talk over with your neurologist. At least you have an appointment in December, I don’t think you’re going to relax completely until you’ve really heard what your neurologist thinks about the risk.
Reading the above link from the Barts team, it actually doesn’t make it clear that you have to be JCV+ for 2 years after you’ve been on the drug for some time. Instead what it says is that when you’re JCV+ it’s only after you’ve been on Tysabri for 2 years that you’re at risk. (I.e. the info seems to be all about if you’re already JCV+ when you start the drug). So I still think you’re OK on Tysabri for up to 2 years after becoming positive for JCV but it just doesn’t come out and say exactly that. Which is why you should get the info from your neuro.
Sue