Last reply 1 year ago
Hello everyone

I was diagnosed with MS in the summer of 2011, I was going downhill pretty fast in 2014 so was put on Rituxan which has kept me stable for 3 yrs. now they’re considering putting me on Lemtrada because they found a small lesion on my recent MRI. I’m just scared of the side effects because this is such a strong drug. Anyone else on Lemtrada here? If so what positive changes have you experienced?

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1 year ago

Hi @sunshineee and welcome.

You want to have a read of our @tracyd ‘s blog. That covers her rationale for Lemtrada all the way through her preparation to how she is after the second round of treatment :-

1 year ago

I was scared to take Lemtrada as well. I just had my second round last week and it went well. I had a very hard time during my first round of infusions because I was in bad shape already due to my MS relapses I was was still recovering from. But this last year was surprisingly good, I had major improvements and no relapses. I had a small period where I felt like I did pre MS. I had a rough time at first but I definitely am not regretting having Lemtrada just for the positive effects I have had so far and it’s only been a year. My only regret was not taking it a year sooner when I was healthy before I had 2 of the worst relapses in my life, but there was no way I could have predicted the future and I felt fine then. But that’s my story we are all so different. Good luck making your decision, follow your gut

1 year ago

hi buddy
i am over 3 months post round 1. Like you i was very concerned about side effects of this treatment. Its not classed as a “big gun” for nothing. Look i was ready to run out the hospital door the morning of this treatment (if i could run…. more like fall out the door…LOL) Take a look at the side effects and rationalise each one to the point where your happy to move away from it then look at the benefits and potential this treatment has to offer. Its not easy but that is what i done i just went through it bit by bit and figured it out in my mind.
I am seeing real improvements( but there slow to come) from this treatment. It is not a cure but its aggressive and hits hard and it dose the job its meant to do. Dont go into this treatment in fear of what might happen regarding side effects – get all that stuff clear in your mind and then go in ready for the benefits and allow your body to go through the ups and downs of the steamroller that is Lemtrada.
if you ask me am i happy regarding my decision to try lemtrada to date i will say yes i am. Not an easy ride but i feel different, better and ready to move forward………..

stay strong my friend………..

1 year ago

@chsmurf82 hi, and thanks for the response. When you say you’ve had major improvements after round 1, can I ask what sort of improvements those were?

@highflyingbird hello friend, yes I’ve gone through the side effects and most of them are rare. I guess the most common one is thyroid issues and that’s what scares me because thyroid problems can make one fatigued and I’m alreadh fatigued. However the more I read and ask people, the more I’m leaning towards this drug. I know you said improvements are slow, but what sort of improvements have you noticed?

1 year ago

this is what i have experienced to date approx 14 weeks post first round of lemtrada. My numbness and tingling has reduced by about 40%. My urgency to use the bathroom has reduced by about 60%. My sleep has improved in the last 4 weeks by about 90% (sleeping throughout the night) My heat intolerance has reduced by about 30%. The main symptoms i suffer from is my balance and walking which has not improved as of yet but i am getting moments where my walk and balance are perfect and i feel strong. this dose not last long but it all new as i never had these “glimpses” before. It is also very nice to be able to stand and shower without falling which is another plus.. also my fatigue which i suffer from also has got better at least 20% better and i am more able to recover from exercise can manage to do alot more in the gym and seems to be getting better every week.
i give % as its easy for me to explain my improvements. that is what i have experienced to date. Thyroid is the most common but also very treatable. its always a risk but so is getting out of bed every day and living so that is my outlook on it …go hard

stay strong my friend……..

1 year ago

Improvements I’ve noticed is my fatigue is not as severe, my frequency in bathroom visits aren’t as much, I have periods of time where I have no numbness tingling or buzzing in my extremities now that come and go (before I had them all the time). I have autonomic dysfunction problems (dysautonomia) from lesions, one of the symptoms of that is postural orthostatic tachycardia that I had for 1.5 years and now that is for the most part gone unless I get very burned out it shows up a little. The POTS and the fatigue calming down are the biggest wins for me as it was the most disabling. Oh and I used to get blurred vision quite frequently with the fatigue and it’s not as much anymore as well!

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