Last reply 1 year ago

I’m starting lemtrada soon which I really hope will improve things for me. I walk with a stick all the time and my relapses are regular and severe, they result in me needing a wheelchair and take months to recover from. Has anyone started Lemtrada and noticed improvement with their mobility? I’m exhausted from the amount of relapses I have and really can’t wait for things to get easier. ?

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1 year ago

I had Lemtrada in May of 2016 and am due for my second round in May of 2017.

It is important to note that Lemtrada doesn’t promise to ease any symptoms that you already have. This is just a possibility and the chances of it actually occurring are as individual to you as your MS. No one is the same, just because one person did benefit doesn’t mean you will and likewise just because another did not benefit doesn’t mean you won’t.

I don’t say this to be mean or nasty. I say this because I see too many people putting so much hope in the medications available to us and whilst they have come so so far in treating MS they cannot cure it yet.

Please know I understand the frustration you have with your symptoms, however I have learnt the most important thing is to focus on the now and what you CAN do. I understand it’s difficult, I understand it’s frustrating and I understand the finding positives in a super crappy place can be hard but it’s what you need to do. It’s what all MS sufferers need to do.

Lemtrada’s main claim to fame is to halt or slow progression of the disease not to reverse it or cure it. Please keep this in mind as you go through the treatment because you are setting yourself for a world of disappointment if the Lemtrada does what it is supposed to do but does not improve your symptoms and that is 100% something you want to avoid.

That being said, I have not seen improvement from my symptoms over the last 8 months. However, I did have a follow up appointment with my neurologist 2 days ago and an MRI showed that I have had no new lesions and my MS which was active is no longer active.

My neuro asked if I had seen improvements and when I explained I hadn’t he did say that it was to be expected. Lemtradas greatest efficacy is after the second dose and most people will not see improvement in symptoms until 6 months after the second dose, some may even require a third etc. in addition he says that only about 45% of people can expect to see these improvements.

It’s not wrong to hope Lemtrada will work for you. It is one of the closest things we all have to leading a somewhat regular life without this cloud of MS over us but it is important to not set yourself up for devastation by expecting too much.

I wish you luck with your Lemtrada infusions it is super scary going in but by the end of the week you’re a pro and 8 months later it’s just another week that seems like it was years ago. I hope that the Lemtrada is able to slow or stop progression of your disease and I also hope you see the regression of symptoms. Most importantly I hope that you are able to take it easy on yourself and see the positives, understand that this treatment is not a cure and that you give it the best chance by not putting so much pressure on it and yourself. The more you expect of this medication the more tense and stressed you become when you feel it’s not working and we all know what stress does to those with MS.

1 year ago

I am so very grateful you have taken the time to respond to my posting.
You are not the first person who has suggested I hope, but with caution in mind. Putting too much pressure on myself to ‘manage well’ is something that I’m doing all too often. It’s so easy to get carried away with daydreams of how things used to be and to imagine them that way again. I suppose remembering how lucky I am that there is treatment available to at least reduce the relapses and outcome is what I should be focusing on.
To be honest I am very nervous about starting Lemtrada. I was previously taking Tysabri but it did not work or indeed agree with me. Did you have any side effects from Lemtrada? Also, have you found you picked up many coughs and colds after your treatment? did you find you were very tired for the first couple of weeks?
You sound like you have had a positive experience with your Lemtrada? I’d love to hear any more information about it which you are happy to share.
Thank you.

1 year ago

I start lemtrada tomorrow and am very nervous about it

1 year ago

Hi there,

I had my second dose of Lemtrada in December 2015.

Originally I had very active, aggressive MS. Like yourself, my relapses left me wheelchair bound. Since having the treatment my life has completely turned around. I used to walk with a crutch but no longer need it. My original symptoms do sometimes rear their head, but on the whole I am a healthy person who feels like she was before being diagnosed with MS.

My immune system is very low and I do suffer from sinus infections. I juice and try not to overdo it. This helps me to stay well and avoid illness.

When I read about all the side effects prior to going in to hospital to start the treatment I was very daunted by all the risks. For me the ultimate question was – is it worth the risk compared to having another relapse. For me the answer was yes and I am so glad I made that decision.

I hope this helps. If you have anymore questions please let me know.

All the best!

1 year ago

I did have a bit of a rough time during the infusions mostly regarding my heart rate and chest tightness. at one point on day 4 they were going to stop it all together but after ecg’s and angiograms they allowed me to continue and I finished just fine.

I had a rash the first day home. It was insanely itchy but between the time it took my partner to get some itch cream and come home it was gone. It did come back once but it was for an hour and then disappeared again. I was very tired and sore for the first week, the glands all over me were so painful but that lasted a day and was gone. I returned to work after having a total of three weeks off.

I had treatment at the beginning of winter and caught public transport to and from work an hour each way in Sydney and only got sick once it did last 3 weeks but wasn’t too bad. My Drs have been good in prescribing antibiotics if there is a possibility of infection both with colds and even just sores that have become infected which seems to be a given every time I get hurt now which never used to be the case. My partner squeezes fresh orange juice for me every morning I’m not sure what part that played in not getting sick.

Other than that it was quite uneventful.

1 year ago

Hiya @lisasb4b
I could go on for hours and bore everyone (again) about how awesome Lemtrada has been for me, of I can just post you the link to the blog that I’ve maintained since before I had round 1 of treatment (I’m now 46 weeks post round 2)
It’s given me my life back
you have a friend request, if you want to talk to a ‘lemmie’ then I’m happy to share contact details

In the meantime here’s a little ‘light reading’ (okay it’s nearly 2 years of my life so it might take a while)

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 SHIFTMS as it’s a registered charity.

1 year ago

Thank you so much for all your postings.

The possibility of life going back to how it was makes Lemtrada worth the risks. I’m so glad you are doing so well Christa. Let’s hope in a year or so I’ll be posting on here about how great my experience was!

Thank you ashory for all your advice I’m so grateful. I’ll have a look at your blog too Tracy.

Good luck tomorrow kellzxox. let us know how you get on.


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