nicolac26 21/02/17
Last reply 11 months ago
Lemtrada

Hi, I was diagnosed 3 weeks ago! It started with Optic Neuritis in 2014. I am recovering from an attack at the moment, still have numb hands, arms and shooting pains down my spine but I’m at work and managing with it. I’m starting Lemtrada in about a month! Anyone that has had this, how did they feel throughout? And did you require much time off work? I know everyone is different I’m just trying to prepare myself! I get myself extremely stressed and anxious! Thank you 🙂

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marcyg921
12 months ago

Hi, I’m on the Lemtrada treatment, had my first round just a few weeks ago, the whole process was really straightforward, had steroids for an hour Monday-Wednesday then for 30 minutes Thursday & Friday, then the Lemtrada for 4 hours each day (can’t remember if that included the flushing) but I remember my machine used to get to 94/100 then it stopped so had to have another 25. Then it was being observed for 2 hours. First day had a very mild headache and a high heart rate but when they checked later all was fine, Wednesday – Friday I got the famous Lem-Rash which clears up almost instantly (except the Thursday night when it came back) also I had a bit of trouble sleeping but that was likely due to the steroids. I would say the main thing is that it is really exhausting, when I was done I felt like I could’ve slept for a month but I felt fine and after a week of rest I’m back to work. No one can say for certain how much time you’ll need off as it depends on how your body responds to the treatment and what job you do, just take it easy and listen to your body.


nicolac26
12 months ago

Thank you so much! That is really helpful. It all sounds extremely positive so just trying to focus on that. I will be starting mine on 20th march all being well 🙂 thanks so much again!! I still feel like I am completely lost with MS trying to understand it better!!


daniel2025
12 months ago

I have been treated with lemtrada. I was diagnosed in 2015 before the diagnosis I had three relapses between August and December as confirmed by my ms nurse as I told her the symptoms etc and got sent for a MRI just to double check everything. By the time January rolled around I had a small relapse but in February I got the lemtrada. I’m not going to lie there are some potential side effects that can happen after the infusion such as watery itchy eyes but your not left to suffer with this your given meds and this potential side effect is temporary. There is some infusion reactions that could happen but the key thing is you will be monitored by staff. My advice during the infusion drink plenty of fluids I got bad headaches during the infusion but by me drinking lot and taking pain killers it was able to be tolerated. Its highly likely you will get a rash as well but this don’t stick around too long. I have just had my second infusion and been relapse free since my January 2016 relapse. My advice make sure you take a book or two or your mobile to listen to music as the hospital TVs are expensive to use. Listen no treatment is without potential side effects but I think your doing the right thing by tackling it head on and fighting back. I’m sure you will be fine is quite scary I remember been very frightened when I was in your position but just remember your doing the right thing and at the end of the day it’s better then doing nothing at all.


clare80
12 months ago

Hi @nicolac26, you’re right, it is different for everyone, for example it will depend on how you are going into the treatment, what it is you do for work and what else you have going on in your life.
I had first round of lemtrada at the end of August. I treated myself to a week’s holiday beforehand, to make sure I had put any work stresses behind me and was going into it relaxed and in the best possible shape both physically and mentally. I also made sure I had plans for the weekend, to keep me distracted and stop me thinking too much about treatment starting on the Monday.
I then had a week off work for the treatment itself. It was nerve wracking on the first day not knowing what to expect but once I was up and running I’d say days 1-3 were fine and actually I was really enjoying having some time to just chill out, read a book etc. Day 4 felt like harder work and the last day was a slog (ended up just zoning out with a dvd) but by then you are in the home straight. The hospital gave me extra antihistamines, sleeping pills and pain killers but fortunately I didn’t need any of them.
After the treatment I had planned a week off to recover. I was nervous about going back to work after that, but it was ok. I did feel pretty wiped out and had a few days of sloping off early, just a case of slowly building back up. I think you learn to listen to your body and just go with the flow – be kind to yourself and you’ll recover quicker than if you are trying to battle on as normal.
When I went back to work, I was uber cautious about avoiding infection. So antibac gel became my best friend, I declined offers of tea from anyone who seemed germy and I made sure I stuck to the dietary restrictions which the hospital had given me.
I agree with @daniel2025 – I normally drink a lot of water, but when I got a headache on day 1 I realised you really do need to drink a hell of a lot. Any hint of a headache and I upped the fluids and found I didn’t need the pain killers. Lots of water also just helped flush everything out and I think it probably meant the rash shifted a bit quicker too.
@marcyg921 is spot on as well -biggest thing for me was the exhaustion. Am sure plenty of people on here who normally suffer with fatigue will just say “welcome to my world”, but I was surprised by the way in which I could be sat reading and then just suddenly have an overwhelming need to just close my eyes and sleep. I’d say my normal Duracell batteries got replaced by rechargeable ones (generally less energy) and every so often it was like someone had suddenly ripped my batteries out altogether and I had to sleep while they recharged.
So 6 months on and no regrets here. I decided that I need to treat lemtrada like my pension. Instead of paying in money I am paying in some time now, to buy myself years of good health in the future.
Good luck with your treatment! Cx


nicolac26
12 months ago

Thank you all so much!! So helpful and makes me feel a lot better and more postive! 🙂


arknat
11 months ago

Hello @nicolac26,

Hope your Lemtrada treatment goes well. Have you been on any other DMDs before you decided to go Lemtrada way ?


nicolac26
11 months ago

Hi, thank you! No, I was only diagnosed a few weeks ago and this was the first that they suggested. What are you on? How are you doing with eveything?


arknat
11 months ago

Hi @nicolac26!

Started with Optic Neuritis and then followed by double vision in just a couple of months. Although diagnosed with an MRI taken right after ON, I was dragging my feet to get started with DMDs. Fortunately, both the ON and the double vision healed completely. I didnt start with DMDs immediately … big mistake! Was a runner and suddenly noticed I couldnt control my ankles anymore in just a few hundred meters (and would actually fall if I didnt stop running!) Was clueless at first and tried all the stretching .. no improvement. It was a actually a drop foot on both feet. Could have saved that ankle 🙁

Started Gilenya Feb 2016 after seeing my neuro. Still have ankle weakness and drop foot after a mile of walk and has not healed. Dont know if it will.

I have read about reversal of symptoms with lemtrada. I hope it works well for you. As for me, my latest MRI came out with no active lesions and I didnt have any relapses so far on Gilenya. I love the convenience of Gilenya and have no side effects on it. Yet would like to check with my neuro if Lemtrada would work better for me in terms of symptom reversal.


tracyd
11 months ago

Hi @nicolac26

You’re getting the rolls royce of treatments to stop the progression in it’s tracks. I had Lemtrada as my first and only treatment and so far I have absolutely no regrets. My symptms have reversed and life is normal (well as normal as my strange existance gets)

My story from before lem right up to now (40 weeks post round 2) is all published and public record here

My blog details from 33 days before my Lemtrada start date and through the whole journey so far.
http://www.tracyslemtradajourney.co.uk

Year 1 of the blog is also available on Amazon as an easy to read eBook for £1.99 with all proceeds coming directly here to the nice people at SHIFTMS as it’s a registered charity.

https://www.amazon.co.uk/dp/B01GE1V00M

You have a friend request if you need someone to talk to PM me, I’m happy to share contact details xxx


arknat
11 months ago

Hi @tracyd,

May I ask what your symptoms were before you started on Lemtrada. Also how long did you wait after you were dx’ed to get on to lemtrada.

Thanks.


nicolac26
11 months ago

Hi, It is just scary to read about all the different symptoms people go through! That is brilliant that you have had no further relapses since being on your treatment. I have had my MRI this week so I’ll see what the results are from that as my last one was in 2014 when I had Optic Neuritis.
Tracy thank you so much for your feedback on Lemtrada! That is extremely positive and i will deffo go ahead and purchase and read your blog.
Thank you’s!!


tracyd
11 months ago

@arknat

Please excuse the copy and paste from the blog however since it’s a matter of publicly available information from the time (Blog post 02/11/2015 – Week 24 – Time flies when you’re doing great.)

What I had before that I now Do NOT have :
•Cog-fog – Gone – The oxygen therapy helped with this greatly my brain is now clear (well as clear as it’s ever going to get)
•Constant Foot drop Gone – If I’m really tired this done reappear a little but rest sorts it out
•Spaghetti leg Gone – This is my name for ‘whole leg drop’ – the extreme of foot drop that had me in a wheelchair coming back from Milan in April – If I really overdo it and walk too much occasionally I can feel my leg getting wobbly so I slow down
•Tiredness – Gone – The oxygen therapy helped with this, I have tried never to call this Fatigue – MS has NEVER stopped me getting up and getting on with things. I regard Fatigue as an extreme where the exhaustion stops you in your tracks makes going on impossible to achieve not just bloody hard, so I call what I have tiredness – My medical team smile at me in that ‘yes dear’ way when I explain this so I’m probably playing it down
•Bathroom Urgency – Gone – And oh boy it’s nice not to hear that screaming claxon in my head yelling ‘Go NOW you’re about to embarrass yourself’
•Optic Neuritis – Gone – My vision has settled down completely now. the pain in my eyes and loss of the ability to see anything in detail (like words on a page) has all returned to being just as rubbish as it’s always been my whole life. My eyes might be dreadful, but I can drive, read and live normally the thought of losing that was horrific to me
•Lack of balance – Gone – .I posted my post treatment physio assessment a couple of months back with the pre-treatment one as a comparison. The lovely Marnie was staggered, it was like night and day I could balance with my eyes open and closed, no toppling sideways and needing railings to hang on to. Now I’m just as clumsy as I always was before MS 🙂
•Sensation loss – Gone – Before treatment the ONLY parts of me that actually had skin sensation was my right arm and from my boobs to the top of my head. Everything has now returned to normal with the exception of my thumb and first 2 fingers of my left hand and the palm bit that joins them. I still have no skin sensation there, but I do have the electric shock / worms under the skin sensation inside when I use that hand.- If that’s the only thing that remains I’m okay with that to be honest.

Life remains awesome, it sometimes has it’s ‘moments’ but over all I’m so glad I asked for Lemtrada first (I wasn’t offered it – I asked for it and then argued my case as to why I should have it rather than Tysabri, Tecfidera and all the other ones)

It was the only one that gave me a chance at a disease free future and I would happily do this every year for the rest of my life it I needed to in order to keep things ‘just as they are’ xxx


arknat
11 months ago

Hi @tracyd,

Thanks for your write up .. Thats simply terrific! Very impressive to see how nicely your symptoms have recovered/reversed.

Despite no relapses and much better MRI results, I do have a few symptoms that continue to linger while on Gilenya.

– There’s the foot drop that kicks in after a few minutes of walking or any cardio activity. I’m done with that activity after that happens (few minutes).
– Then there’s this moderate muscle stiffness in the thigh, lower legs and ankle that comes on with any mild exercise/weight training that makes me walk extremely slowly like a robot with low battery!
– Numbness and lack of sensation in my feet/upper left chest that comes and goes at will without any provocation or maybe I haven’t found the provocation yet.
– Lack of right wrist control and strength sometimes making it difficult to sign or even write my name. Embarrassing at times when I have sign something in front of somebody.

Only exercise I do can do now for 45 min/an hour without the MS symptoms bothering me is Yoga. My Neuro has to decide if Lemtrada is right for me is only based on my persisting although not very serious symptoms. We’ll see what he says ….

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