Last reply 1 year ago
How Lemtrada changed my life…

I feel blessed. A strange opening sentence from an MSer but I’ve been very fortunate with my diagnosis and treatment. I also love this site as this was most definitely what I needed when I was first diagnosed in 2008. Unfortunately it did not exist then and my diagnosis and the following weeks were a very dark time in my life. I am pleased to say I’ve emerged from the tunnel smiling and have to say Lemtrada played a big part in that…

I suffered from numbness in my legs in 2007, which eventually went away only to come back in my hands in May 2008. I started under going a number of neurological tests and during that time the numbness came back in my legs. By this time I knew it was MS even though I’d had no diagnosis. There were other symptoms that I had diregarded previously but now made sense. I’d put my fatigue down to working too hard. I’d blamed my frequent trips to the loo on a weak bladder. Then I went to bed on September 7th feeling ok and woke up with no sensation from the neck down. I could still move my limbs but had absolutely no feeling. To have a shower I’d have to check the water with my face to make sure I didn’t scald myself and acually trying to wash was really difficult. Brushing my teeth was nigh on impossible and even drinking a glass of water or eating meals was tough. I became incredibly dependant on my fiancee to look after me. The only problem was she was eight months pregnant with our first child at the time. I should have been caring for her and instead she had to take care of me. It was an incredibly painful time and the thing that haunted me the most was the thought that my son or daughter could be born any minute and I wouldn’t be able to hold them or care for them.

I got the diagnosis a month later and luckily when my son arrived my sensation had returned and my relapse had abated. We were keen to hit the disease hard and I’d found out about the lemtrada trial (or campath as it was known then). I was entered onto the phase three trial. At the time I’d had three relapses in the space of 4 months, was suffering from significant fatigue, had varied sensation and the lasting impact of Uhttophs syndrome (meaning any light exercise or heat brought my symptoms back). On the Disability scale I scored a 3 out of 10. I went from being a very active and very fit sportsmen to being unable to run/jog at all – even a long walk was a challenge.

Fast forward 7 years and three doses of Lemtrada. I’ve made two positive career moves both of which have been steps up for me. I’ve got two great children and plenty of energy to play with them both. I’m active again and have played football again for the first time in eight years. I can run 5km comfortably with no symptoms. My bladder is the size of Belgium – well at least it’s allowing me to go out for an evening without spending more time in the loo than in teh company of my friends. And most importantly I have had no relapses.

There have been some challenging moments on the journey and for those of you who are about to be treated with Lemtrada I’m afraid to say the accompanying course of Aciclovir is my fault (long story for another time)! For those of you considering Lemtrada all I can say is that from personal experience it has worked wonderfully for me. The treatment laid me low for a couple weeks but that was a small price to play.

More than happy to answer any questions anyone may have but conscious that us-emma has already been doing a sterling job on that front 🙂

Finally I’d just like to say thank you for the team who created this positive, uplifting online sanctuary. I’m only in week three of the new job so all a bit hectic for me but once things setle down I hop to make a positive contribution on here.

I look forward to hearing your positive stories

Take care one and all

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stumbler
3 years ago

Thanks for sharing that positive tale, @tigerdes.

And welcome…… 😉


jdeeley
3 years ago

What is your Disability scale out of 10 now?does that change?


us-emma
3 years ago

Thanks for your story- you can’t make this stuff up!

You have given me a new goal- to get back into my pre-Lemtrada physical shape (water polo, syncro swimmer). I have been dabbling in the shallow end but I really need to devote more time to my physical shape- now that I have a future of fun and activity ahead!

Good luck in the new position 🙂

Take care,
Em


carly
3 years ago

WOW!!! I’m in luck! I’m actually looking into Lemtrada. Since I’m having an attack and my symptoms are acting up, they want to take me off Tysabri. I’m just starting my search and this is the first post I read and it’s so positive.

Thank you so much for sharing,
Carly 😉


Anonymous
3 years ago

You ARE lucky! I have been trying for over 2 years to get Lemtrada which took an extra year for the FDA to approve in the US. I am finally getting it next month after working hard to petition the agency to reverse itself. Make sure that you get Lemtrada and not one of the weaker DMDs as you can not only miss out on the benefits of Lemtrada, but suffer what’s known as Tysabri withdrawal syndrome. That happened to me when I switched from Tysabri to gilenya. Tysabri controls most cases of MS better than all of the other DMDs but carries the risk of PML. I suffered one of my worse relapses 3 months after quitting Tysabri which I unfortunately did not tolerate well after 18 months. I can tell you that the positive stories reported about the benefits are real and pervasive. I know of several patients that improved dramatically when making the switch. I hope we can add you to the list! Do yourself a favor and read the latest postings on Lemtrada at this blog.


tigerdes
3 years ago

Evening everyone. Thanks for the comments

Edit: had typed a much longer message but it’s been lost for the second time 🙁 will type a longer message when I get home 🙂


tigerdes
3 years ago

Ok – sorry about the earlier issues. Hopefully I’ll be able to post now without worrying about losing my finely crafted proes 😉 Thanks again for your comments in response to those of you who messaged me:

J – my disability score is now 0 🙂 Don’t get me wrong I still have the occasional difficult day (normally when I have been overdoing it or am feeling unwell) – that said those days are thankfully few and far between 🙂 I’m not sure everyone has the same benefit from Lemtrada and certainly the fact I was treated very early on and and was treatment naive may have helped. That said there are a number of people whose symptoms have improved after treatment – but I’m not sure they are 100% clear why that happens.

Emma – great to hear you are going to be taking the plunge 🙂 It sounds as though you were pretty active pre MS. I did make a big mistake when I first started getting back into exercise in that I was too hard on myself. I judged myself against how I used to be pre MS rather than celebrating my progress post MS. Took me a long time to start to appreciate that while Lemtrada was helping to improve my condition it was never going to make me 8/9 years younger! 😉 I never told my friends or my colleagues I had MS and didn’t want my family to talk about it, especially when I was first diagnosed. That meant I kind of bypassed the acceptance stage in some ways but I’m all good now 🙂

Carly – good luck with your treatment decision and I hope you pick something that works and is right for you. Please keep us posted on how you get on and if you have any questions about Lemtrada and what the treatment is like please feel free to message me.

mbrsinc – I totally agree with you about the frustrating FDA delay. Being on the trial and having it work for me and knowing there were other people who wanted it but were being denied access was gut wrenching. Really pleased you are going in for treatment next month and hope it goes well for you. You’ll be back on the trike and then in no time back on the bike again I-m sure!! My Lemtrada tip is to keep getting the water down. It’s hard going – 3.5 litres day and more trips to the loo than you would ever want to make especially when you’re on a drip – but it does help to alleviate sme of the affects of the chemo.

I wish you all well and those of you embarking on Lemtrada treatment I really hope it works as well (if not better) for you as it has for me.

Take care everyone and think positive. Here’s to MS Energy! 🙂


jdeeley
3 years ago

Has your consultant confirmed your disability score is now 0 ?
I only ask because I have spoken to my consultant about trying this drug and I asked him does it improve your score but he said no. I had read somewhere else that the score was reduced by about 3-4 points but he said he had never heard this before.


hannah015
3 years ago

Hey @tigerdes

So happy to hear your story I’m currently waiting for my hospital to set up Lemtrada as I will be having this treatment shortly, great to hear positive stories about it. So glad your doing well

Thanks
Han


tigerdes
3 years ago

Hi J yes it was my consultant who told me 🙂 For me it was an unexpected bonus my main hope was that Lemtrada would stop my relapses. I think they are probably cautious in terms of talking about improvement as I’m not sure it happens for everyone

Best of luck with your lemtrada treatment Hannah. Really hope it works well for you.


crackers
3 years ago

Hi, glad to read your post. I’ve just today come out of hospital after my 3rd lot of Campath. Reading your story has made me want to try exercising more. Over the past couple of years, working full time I’ve been to tired to do anything ( or was I just making excuses?) so this year I’m going to make an effort.
Just to back you up, anyone offered this treatment don’t hesitate it does make a big difference to the quality of your life. 5 years from diagnosis , struggling to walk and I’m still working full time and now mobile again.
Heather.


tigerdes
3 years ago

Thank you and great to hear your plans to try and be more active 🙂 I hope you enjoy getting back into exercising as well and you continue to do well on Campath/Lemtrada.

Take care

T


us-emma
3 years ago

@hannah015

I made dramatic improvements after my first Lemtrada dose as well. Improvement can happen- especially the ‘younger’ your MS disease is (less time diagnosed). I had been diagnosed 10.5 years when I received Lemtrada- anything over 10 years diagnosed is considered to be a ‘long time’.

I know two other Americans who traveled to UK and Germany for Lemtrada last year. Both had been diagnosed over 20 years and both have made steady improvements but not quite as fast as I did.

I returned to working full time hours, returned to driving, work out regularly at a gym (was so fatigued prior to lemtrada that I had to give up even a trip to the grocery store I was so tired) and my eye sight has improved so that I can see at night now.

I no longer have muscle spasms, numbness, pain (I was in considerable pain prior to Lemtrada) or sleeping problems. I take almost no medication for my MS disease.


hannah015
3 years ago

Hey @tigerdes and @us-emma

Thank you both, I’m feeling incredibly positive about it.

Emma- your blog has been amazing reading aswell, given me so much info I even knew more than my ms nurse 🙂

I got diagnosed in March 2014 after a particularly bad sudden relapse. My mris show a lot of lesions so they feel it would be best which I’m glad about having read how amazing Lemtrada can be. I feel it could make a massive difference.

Thank you both x


Anonymous
3 years ago

That is AWESOME! I have a friend in clinical trials that had an “older” case and found great results occurred the 3rd year post treatment. She went from wheel chair bound to walking 4 miles each day and many of her other symptoms resolved. I think that says that NO ONE can say it is too late. The line between relapsing and progressing is grey at best. Stop the progression effectively with a drug like Lemtrada or Tysabri and eventually the body’s neuronal reserve can possibly help even “older” cases. She has been my single biggest inspiration and advocate. She has friends that have seen similar improvements. I don’t know about others here, but I think those results are unique to Lemtrada and possibly Tysabri with it’s ongoing treatments. Just sayin!


sinead
3 years ago

Thank you @tigerdes so much for sharing your story, and to everyone else on this site that inspired me to ask for Lemtrada months ago. I’ve just had confirmation that I am finally due to start treatment this Monday, and I’m extactic! Obviously nervous as I know it wont be easy, but it’s the first positive news I’ve had in a very long time and I’m looking forward to this new phase of trying to combat the disease. I hope everyone is doing well, and will let you know how I get on hopefully 🙂

Best wishes, Sinead


us-emma
3 years ago

@sinead,

Best advice for the week- Be Hydrated. That single step will make the week go much smoother. Try to drink 3-4L of water on the few days before therapy and every day of therapy. I know that sounds like a lot but most of the annoying side effects of Lemtrada will be helped by just being hydrated.

Please let us know if you have any questions.

It is so good to hear about more and more patients receiving Lemtrada 🙂

Take care,
Emma


tigerdes
3 years ago

Great news @sinead 🙂 Hope your treatment goes well and Emma’s advice about hydration is spot on! Take care. T


emzi
3 years ago

Hi. Very nice to find your story. My partner has been diagnosed with MS last Friday. He is due to start lemtrada\campath beginning of April. I am just trying to do as much research as I possibly can. One question he is eager to know, how long do you think he will need to take off work after he has had his week of treatment. His nurse has advised he will be back the following week!! But from what I have read on here that doesn’t seem likely. Any information greatly appreciated 🙂 x


docoz
3 years ago

Complicated question to answer. Many factors to take into consideration. No two people go through the same exact MS experience. My best advice would be now is the time to just focus on yourself. Work can wait for as long as it needs to. Your health is your wealth…

Doc

ps earliest ive ever come across is 3 months. But I’m perplexed by how he was diagnosed last friday and going straight to lemtrada in a month?


tigerdes
3 years ago

@emzi different people react in different ways and I’ve had two very different experiences after my treatment. After all three of my treatments I had one week off afterwards and was back to work. My first and third treatments I felt pretty washed out for about four days and then started to feel like my old self. My second dose I felt rotten for about six or seven days but was still back at work the next week. Hope this helps but feel free to message me if you want to find out more


emzi
3 years ago

Thank you both for your advice.

@docoz yes was diagnosed last Friday and was offered tablets, injections or lemtrada there and then. He was not allowed to make the decision on the spot as they wanted him to think carefully about it but was allowed to call up the Monday to book the lemtrada. This should be beginning of April.

Thanks 🙂


Anonymous
3 years ago

@emzi, As someone in the US who has worked for more than two years to get Lemtrada and will still not receive it until later this month, it is gratifying to see a young patient(in terms of MS DX) gain access to Lemtrada when it is a “near cure” as an approved first line treatment instead of a “near miss” as required by our FDA as a third line treatment. The patient should feel so lucky that Lemtrada was approved and he had a smart enough neuro to prescribe it so soon to DX. This should serve as an example to other neuros and MS patients to prevent MS from gaining a foothold and not leaving it up to chance to prevent the progression of disabilities.


Anonymous
3 years ago

We should make sure that @us-emma sees this discussion! She had references to statistics concerning this issue on her blog.


us-emma
3 years ago

Thanks mbrsinc, we did go into a private message on this.

My views echo those here- that recovery is a longer process but I think @tigerdes might have had a shorter recovery due to young age and newer diagnosed than me. So perhaps Enzi’s boyfriend might skew to that end.

I would prepare for a longer recovery and then be happily surprised if it was shorter 🙂


nunuu
3 years ago

Hi all
I was diagnosed with highly active MS a month ago.
I will Start my First Lemtrada infusion in 6 weeks. I am very stressed with my job at the moment, I have to move , start a new job and pass my probation time, take care of an 11 year old son, all by myself.
I want to know how long it will take me after the infusion to be fit again and able to live and work effectively ?
Thanks in advance
Wish you all the health and happiness 🙂


nunuu
3 years ago

I am sorry, it is the stress of the new diagnosis , I ve just realized that my question has already been answered.
Thanks


stumbler
3 years ago

Hi @nunuu and welcome to the forum.

I’m glad you found the answer you needed. Good luck with your Lemtrada treatment – your medical team are going to hit your MS and hit it hard and quickly.


us-emma
3 years ago

@nunuu,

Please ask any questions you have. Starting a new thread might get your post more visible

I hope your infusions go well! Lem has changed my life- first infusion April 2014.


bonang1975
2 years ago

Hey guys Ant here again its been a while? Just need to know if it is normal to feel so tired all the time after kemtrada. I do feel like my sumptpms have got a little worse is it normal. Its been
about 5 months since the lemtrada. Your info h be much appreciated ☺


dolphingirl
2 years ago

I just joined this. My husband has been diagnosed since 2005. He has been on Tysabri for about 7 years now, but it is starting to not work. We were just told he had a new lesion show up on his MRI. The doctor suggested possibly doing Lemtrada, so I am starting to research and find out information about it. The one thing that I cannot seem to find at all is: if this treatment does not work great, can he take anything after it or is this a last option? Does anyone know if anything can be done later if the Lemtrada doesn’t work?


monica2015
2 years ago

Hi @tigerdes, thank you for sharing your story. I received treatment four months ago, and am far from from my glory days, but it has been extremely inspiring and uplifting hearing your words.
Whilst my dx was 11 years ago, and I’ve experienced 71 relapses to date, it was the last year’s 7 episodes that really caused what appeared to be irreversible damage. However, I’m seeing some improvement now, but still early days, nonetheless I’m still excited and hopeful about the future. Reading your story has simply added to that, thank you!
@dolphingirl, it’s a 2 year treatment 12 months apart, and can be repeated by agreement as necessary I believe, so hopefully it has an opportunity to take full effect!


monica2015
2 years ago

@tigerdes, what was your EDSS prior to treatment, may I ask, and how long would you estimate it took to return to full functioning and a 0 EDSS? Just curious, not attempting to compare or compete!!?


angel02
2 years ago

Hi @tigerdes thank you so much for your response!! I have read your blog as well gave me a very positive feeling. My main worry actuely concerns my two boys, who are both teenangers. I am a single mom and I am happy to say I have been doing quite well on the previous treatments so I was able to manage the situation at home well. Now with the lemtrada I am afraid I will be bed- ridded due to fatigue following months. Severe fatigue that is what I’ve hear the most. I don’t want to miss out on their lives. How was this for you? I mean the two years in which you were treated with lemtrada??


tigerdes
2 years ago

Sorry @monica2015 missed your post. It took me 5 years to get down to EDSS 0 but I have crept back up to 3 probably due to returning activity. Hoping to see that go back down again 🙂

@angel02 it does affect everyone differently. For me I was back up and running in two weeks. It is one week since round 4 and I am probably about 80% recovered. Expecting to be fully back to pre treatment state next week. Hope this helps…


lyndsey
1 year ago

I am glad you had a positive experience. I had lemtrada in January 2016 and I’ve never been worse ;-(… My walking and standing time has decreased dramatically. I go for round 2 in January 2017 but am beginning to wonder what on earth I’ve done…. Feel like I’ve been duped into thinking this was the best option for me

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