Last reply 3 years ago
Lemtrada write up

Hello everyone. I thought I’d write a quick post for anyone thinking about or due to have Lemtrada.

I’ve just finished my first 5 days of treatment and got home last night. In a nutshell it was fine.
Day 1,2,3 IV steroids were given for one hour then a break for another hour than 4 hours continual IV Lemtrada. Day 4 I went without the steroids but was put back on them yesterday as I got a rash. When on the Lemtrada your heart rate and blood pressure is measured every 15 minutes or so.

Side effects: Day one I really ached, not unlike the effects of Rebif. Day 3, unsightly rash. I’m tired but not totally debilitated. Overall I’ve felt woozy and my eye sight has deteriorated sightly which worries me but I’m hoping this is due to being overtired and pumped with drugs. No other MS symptoms have reared.

I’ve been sent home with some anti viral medication and a sick note for a week. Follow up appointment in a months time.

So, no regrets. Being chained to the drip was what I found the hardest, that, and the lack of general privacy and autonomy afforded to the patient role. Spending a few days on a neurological ward has only reinforced my reasons for having this treatment. The staff were pleasant but a life in and out of hospital, being dependant, vulnerable and at the mercy of others is not the life for me.

My neuro bought along some students to look at the MS patient (me) yesterday. I was asked an array of questions one being does the risk of ITP worry me. My answer was no, that the risk of MS worries me more than any other. I made sure to say MSers don’t want risk adverse doctors, we want doctors that listen and treat hard and early.

Lemtrada is my hope in a bottle

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jasfromtas
3 years ago

Thank you @sandwich, love your positive attitude.
Interesting that they asked you about the ITP, this is my neuros main gripe (I would not accept blood products as treatment, so this ‘complicates’ things, should ITP occur)… That said, YOU ARE SPOT ON in that the risk of MS outweighs the risk of ITP. Am glad you were able to tell your docs this! Go you!


tracyd
3 years ago

@sandwich

Congratulations on your lack of an immune system 🙂 xxx

Sounds like your week pretty much mirrors mine, I had student doctors, nurses and even a future Lemtrada patient talking to me about the treatment. I agree completely with the MS scares me more than some side effects that medication can control. Looking forward to my blood test results in 3 weeks time TBH 🙂


Anonymous
3 years ago

Thanks guys.
Cant say I’m feeling all that positive today although not sure why. Can steroids affect your mood? Last time I took steroids I felt weepy but put that down to the situation at the time. I wonder now though if they do affect me or if its just the aftermath of being in hospital again. I know I find it hard being a patient and seeing others with severe disability doesn’t exactly fill me with positivity.

Anyway apologies for my ramblings, apart from feeling a bit foggy and like I want to cry, physically I’m in good shape and hoping tomorrow is a better day.


stumbler
3 years ago

Stay strong, @sandwich. You’re dealing with a lot at the moment, physically, mentally, emotionally and medically.


jasfromtas
3 years ago

@sandwich Sending big hugs your way and hope you are feeling very much better in a couple of days xxx
If it helps, my mood goes hay-wire with steroids, and I know I am not alone. A little (ok, sometimes more then a little) manic when on them, and then down-in-the-dumps world-is-ending felony-committing (jokes of convict form Australia aside) pain-in-the-butt-to-be-around about 3 days after and that lasts about a week.
Perhaps a good time to stay away from annoying people and heavy objects? x


Anonymous
3 years ago

Lol @jasfromtas your post made me smile.

That’s exactly how I feel. I’m glad I’m not the only one! I’m feeling slightly more rational today x


helena
3 years ago

Hiya
Thank you for spending time to write your blog about your journey with Lemtrada, I am sure it will assist others in their choice of treatment.
I was diagnosed in Jan this year with RRMS and tomorrow I have another scan to see if MS is active. If so I may be offered Lemtrada…..I am beginning to agree that hitting it hard and early is a positive move, I am still trying to get my head around the negative and possible side effects. Did you have to have tests before the treatment began to see if you were able to have it? how long did you have to wait?
I am glad to hear that you have coped well during your infusions and that your feeling ok let’s hope you remain in a stable and positive condition you have been very brave!
Looking forward to hearing you


macattroll2
3 years ago

I’m currently on the lamtrada treatment
Day 1
Went pretty well steroids first then anti sickness pumped in the lamtrada for 4 hrs. Last hr I felt feverish and tired and cold but once I awoke I felt ok again just needed paracetamol to control my temperature. So all in all day 1 complete and better than expected. Time to sleep and prepare to get on with day 2!!! I shall keep you posted xx


Anonymous
3 years ago

Glad day 1 went well @macattroll2.

Hope your scan went ok @helena.
I really do believe early aggressive treatment is the way forward. I’ve researched countless articles and all seem to be saying the same thing. My MS is not that “active” at present. At least as in I haven’t had a relapse or any symptoms in some time. Another MRI showed a new lesion though hence being eligible for Lemtrada. Remember the licencing for Lemtrada is quite liberal and MRI activity on its own can be considered as active MS.


Anonymous
3 years ago

The screening tests are quite comprehensive. You have full bloods done and are also tested for HIV, Hepatitis and TB, also chicken pox. Bloods and chest x ray took about a fortnight to come back and all in all I waited 3 months to start the treatment.


hollylb10
3 years ago

Steroids made me feel like a drug addict craving for my next fix, I had an Insane headache and if I could have taken more to stop it I might have done I was so desperate! After that passed I was an emotional mess!

Can I ask a questin to all those on Lemtrada. I have heard that once you have had lemtrada you are on it for life…in other words you can not switch between different meds if it does not work for you? Is there any truth in this? X


Anonymous
3 years ago

No that’s not the case. Apart from Tysabri though there isn’t much competition about for Lem so I would imagine if you don’t respond to it its unlikely some of the less efficient drugs would help. That’s just my view though.


snowbeetle101
3 years ago

Thanks for the info sharing – forgot they included steroids with it.

In answer to last question they will give you extra follow up Lemtrada if you need more (i.e. not working) and I’ve actually been told they would do AHSCT on me if Lemtrada doesn’t do enough. So options.

And who knows what else they will have in 2-3 years, so much in development.

Good luck all.

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