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My lemtrada experience

I’m currently in hospital receiving lemtrada treatment and was thinking it might be useful for other people to share my experience, whatever that may be! Might write a proper blog but thought this is a good place to start with some notes. Day 0 Went into hospital the night before I was due to start treatment, mainly to hold a bed. Had bloods taken and cannula fitted. Wasn’t very impressed with nurse who admitted me as she was clueless about the treatment which made me nervous that she would be administering it (thankfully at the time of writing which is the morning of day 2, I haven’t seen her again). Also had anti clotting injection in my belly before bed. Day 1 Started treatment around lunchtime. Anti histamine, anti viral and paracetamol in tablet form followed by half an hour on steroid drip. This was then switched for lemtrada which comes in a black bag so looks like poison I thought! Had blood pressure, heart rate and temperature taken every 15 mins for 2 hours then every 30 mins for 2 hours so was on the lemtrada for 4 hours. Not much in the way of side effects other than very slight headache and feeling a little achy. The nurse, who done this before, said her previous patient had found it rough for the last half hour each day so I was waiting on the rash but thankfully I was fine. The evening afterwards felt like I had a very mild dose of avonex flu and I didn’t sleep much that night after due to the steroids but so far so good! Oh and I had another anti clotting injection before bed.

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Hi Pob, thanks for letting us know I would be interested to hear how you get on in the coming days and weeks, do let us know. Good to hear your experience so far is ok.

xx

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Day 2 Followed the exact same protocol as day 1 in terms of what I was given and when. Only difference was that I didn’t get the side effects I felt yesterday but did come up in a raised itchy red rash on my arms, legs and stomach towards the end of the infusion. The nurse gave me a large dose of intravenous antihistamine which quickly gave me relief. Took some more in tablet form before bed and it was well down in the morning. Slept pretty well overnight.

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wonderful news.

lemtrada sounds an amazing treatment.

hope you get amazing results!!

carole x

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Forgot to say on day 2 I had to have a new cannula fitted to my other arm on as the first one got loose, probably from my careless moving about. Was a pity as it had to go in my arm with better veins so meant it was gonna be difficult giving blood samples the rest of the week from my ‘bad’ arm. Anyway… Day 3 Woken at 6am to get blood taken. Suspected at the time they hadn’t taken enough and think I was right. Got all the same drugs (apart from lemtrada) slightly earlier today so thought we were making good time but then there was a delay with my bloods. Gave another sample round lunchtime which had to come out of my hand after a few failed attempts. Finally got started on lemtrada at about 5.30pm. Rash appeared with about 90mins to go over a much larger area of my torso and nurses had difficulty getting a vein to give me the IV antihistamine so decided to suck it up until the lemtrada was finished - such a relief when I got it! Still itched a bit over night so took more orally as and when allowed. Temperature was a bit low, not helped by the ward being cold anyway, but manageable.

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Just remembered I never finished this and if anyone was reading (don’t think many are but you never know) they might have thought the lemtrada killed me!

Anyway, day 4 followed the same pattern although we got started a little earlier as you only get given steroids the first 3 days. I was worried that this might mean I felt more of a reaction to the drugs but happily not. A similar level of itch to the day before but nothing that I couldn’t handle.

Didn’t sleep very well overnight as felt freezing. The ward wasn’t particularly warm but I do think this was a side effect as it couldn’t be as cold as I felt!

Day 5 was more of the same although we got started earlier again as the nurses said they were hoping to let me home that evening, subject to the neurologist agreeing. I felt really cold after the infusion and my temperature was a bit high so had to wait for a few hours and take paracetemol to get it down before I could be discharged but was delighted to get home about 9pm. I have to take an anti-viral tablet for the next month and they gave antihistamine to take as needed as there is some lingering itchiness.

I slept for over 12 hours straight that night and was still exhausted the next day and the day after so enjoyed some daytime naps. My energy gradually came back over the next few days so I decided to go back to work on Thursday.

Its now 2 weeks since my first day of infusion and I’m feeling pretty good (I should caveat this that I had been feeling well recently before going into hospital so can’t be definite that I’m feeling good due to the treatment). Its early days but no significant side effects to report so far so fingers crossed in the longer term that lemtrada does the business.

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Have been following thanks for posting, good luck x

Glad to hear your doing well. As more and more people start using this drug experience from those who have been through the process are invaluable. I had my infusion 6 weeks ago. I went it to it pretty well after a sensory relapse 6 months after by daughter was born. The only problem it left me with was a “fuzzy” feeling (technical term) when tired. I can say that has definitely improved and only gave it very mildly in the evenings if it’s been a hectic day at work and my energy levels are significantly better. May be the steroids rather than the Lemtrada but it’s great to be able to feel so well and know that I could feel like this many years ahead which gives me a positive perspective on life now. Keep us updated on how you are doing x

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Brief update and bump for anyone thinking about this.

Its now been 2.5 months since I had my treatment. So far all is well with no episodes and clear monthly blood tests. Like Bagpuss above my energy levels seem better than before. I didn’t suffer severe fatigue but more from brain fog which meant I struggled with concentration etc - my mind feels a clearer now and my thinking sharper (might be because I don’t spend as much time worrying about MS tbf!)

Anyway its still early days but currently pretty happy with my lot.

Think I’ll come back and update this periodically as I quite enjoyed re-reading what I had written from the hospital as I’d forgot about some things!

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Hi,

this is really useful to read as im currently been asked to choose between Lemtrada and Tysabri

Thank you and I look forward to your updates :slight_smile:

Brilliant news pob. I had mine two months ago and so far so good. I can relate to your comment re worrying about MS less. That in itself is quite wonderful, not to mention energy saving!

Hope it stays good for you.

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Hi pob it was good to read your experience of Lemtrada and also the updates too! Can I ask what your relapses were that led you to getting the treatment? I haven’t had many relapses at all but struggle with fatigue a lot so it would be interesting to know. Also Humbug what led to you having Lemtrada?

Sounds like it’s working well for both of you which is great and Bagpuss too!

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This is really interesting - I’ve been thinking about Lemtrada after four years on Tysabri, during which I’ve seen massive deterioration. However, I’m not at all sure I’ll be seen as a suitable candidate. Pob, could you tell us when you were diagnosed and what kind of state you were in before the Lemtrada?

I was diagnosed 10 years ago and recently have had a couple of relapses. This Saturday I’m having an MRI then an appointment with my consultant on 8th Sept. I’m hoping he’ll suggest this route for me :slight_smile: love hearing about peoples experiences. Thank you x Sharon

Hello, all this was very helpful, thank you Pob. I can start lambrada or tysabri but problem with tysabri is they done my blood test for virus and find it I have it, so it’s 1000 -1 to develop pms I don’t know what to do after reading pobs posts I’m more positive with lambrada. Thank you

For those asking about what led to getting Lemtrada:

I was diagnosed 3/4 years ago (spent the best part of a year pretty sure I had MS but put off getting a second MRI to confirm it)

What led to MS diagnosis was optic neuritis being picked up way after the event and leading to further investigations. I’ve since had one significant relapse (just after starting on Avonex) where my eyesight was messed up and I kept losing control of my arm/hand/face due to spasms. I’ve had other sensory ‘episodes’ such as numbness in my hand, fatigue/brain fog and mild muscle spasms but generally I am in relatively good shape - not even my entire immediate family even know I have MS never mind the outside world.

I had been telling my neuro that I thought Avonex wasn’t working due to frequency of symptoms described above and that I would rather be on something stronger (I listed what I’d like to get in order of preference with the ‘not out yet’ Lemtrada at no. 1). She sent me for another MRI before making any changes.

When the results of that MRI came back she agreed that I should go on something stronger (to my uneducated eye it looked like I had acquired a shitload of new lesions). At that point Lemtrada was close to getting approval so I said I’d wait for that. I also went for the JC test for Tysabri but was JC+ so didn’t have a difficult decision to make.

I think what helped in getting Lemtrada was that I am relatively young (mid 30s) and don’t seem to be too damaged by MS yet but also the level of interest I’ve shown in the different treatments. Monthly blood tests are required for at least 5 years so I think the docs need to be confident that you’ll comply with that protocol. I was surprised that the neuro thought people wouldn’t but in her experience its pretty common for people to forget about their treatment or stop taking it when they feel well - that would obviously be quite a problem with Lemtrada since undetected side effects can cause death!

Hopefully I’ve answered everyone’s questions but happy to help if there are more.

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Hello I’m in early 30s and my doc suggested start on lemtrada as well I had relapse recently still not recover from it. I’m really scared of this drug, that could do more damage than good . I was before on Gylenya . I got one week to decide. But I don’t know :frowning:

Can you tell the difference now .

See my post above from 3rd August - short answer is that yes I do think its made a positive difference.

Its a long term game and I might just be feeling better from not worrying so much, or maybe its the treatment, or maybe I’m just having a good patch. Who knows? I’ve been feeling more tired than usual this week but is that down to MS or just life?

My thinking on the risks was that maybe I might get side effects and on the other hand maybe I’ll get screwed by MS in the future. I concluded that I’d rather minimise the chances of the latter and take my chances with the former.

Its your decision so do whatever you feel comfortable with. My choice was to pin my hopes on this treatment working so I could get on with life and not spend it worrying - if you aren’t confident in it you won’t get the same benefits (in terms of improved outlook) out of it as me.

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I was diagnosed in August 2011, in the January of the same year I had facial paralysis, brain scans showed nothing, in the August of the same year I started to lose control of my left leg I went into hospital and had many neurological tests, I had a lumbar puncture and many MRI scans by the end of the week they gave me a diagnosis of MS and had huge doses of steroids.

I was told I had Relapse remitting MS but I couldn’t see how they could say that when i was so newly diagnosed. I was started on Rebif and I had to self inject 3 times a week, I continued to Relapse and it was deemed that the Rebif was not working I then went on to Tysabri this seemed to slow things down but I continued to have all the symptoms and never seemed to achieve a remitting period. I had paralysis, numbness and pins and needles in my right hand and the paresthesia in my left leg continued to get worse and progress into my foot this has now spread into my right leg, I tested positive for the JC virus prior to my first infusion, as the JC virus level was so high, 5.6 (normal JC virus is about 0.1) it was decided at the 2 year anniversary of me being on Tysabri that it was too dangerous to carry on because of the increased risk of PML, and I was still continuing to have all the symptoms and still relapsing and deteriorating.

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It was decided that I should go on to Alemtuzumab (Lemtrada).

Prior to starting this treatment I was on a wash out period, and went onto Fingolimod which is supposed to less dangerous than Tysabri but not as effective and I continued to deteriorate.

I had the treatment in hospital, towards the end of the week I was so weak I could barely walk this condition has continued to get worse I am now in a worse state than when I first started Tysabri treatment, Lemtrada has really messed me up, I could walk reasonably well before the treatment now 4 months later my walking is so bad I can barely get around on crutches I have new activity in my spinal cord which showed up on my last MRI scan indicating that the Lemtrada has not done the job it should have. During the treatment in hospital I felt really sick everyday and as I said before I continued to get weaker and weaker I ended up leaving the hospital in a wheelchair. I saw my specialist recently and she had no answer as to why my condition was much worse than before, I am now going to have another MRI scan with contrasting dye to highlight this new activity in my spinal cord, it has now been 4 months since my infusion and my condition has continued to deteriorate I am now being told that the only treatment left will be stem cell therapy which might be able to be started next year but I am being told that this is a extremely risky treatment with a 2% Chance of death, not a very exciting prospect.

I have been l been off work for 4 months since the Lemtrada treatment and was increasingly concerned about losing my job, fortunately I have a good employer and I am being set up at home to work.

For me Lemtrada has been a truly bad experience that has left me in a much worse condition then I was before the treatment was administered.