Last reply 1 year ago
Feelings after Lemtrada..

Hi guys.

I am 1 month post R1. I have been feeling good generally, the odd day here and there, a migraine and tiredness. But lately I started feeling bad and scared, and it’s been going on for 2-3 days now. I am wondering if I am the only one that feels this way really.. As in, am i the only one that freaks out after Lemtrada that it might not work? and if it doesn’t, what do i do? Or am i the only one that has this paranoid view that my MS cannot stop even though I know all the logic behind this treatment and how well it is supposed to work..?

I don’t know if any of this makes sense. I just turned 24 and it’s hard to deal with all of this. The unknown, the fear, anxiety. I was on antidepressants but I decided to stop them because it is not something that I want to take long term. I also have therapy once a week, but in the last week it didn’t help. I feel like I built up all my courage and my strength pre-lemtrada, used it all in the hospital during 5 days, and now my batteries are dead (I mean mental batteries, or feelings batteries) and I lost all my strength, courage, faith, hope.

I constantly hear people say “this is a marathon not a sprint” , “it’s not a cure” etc, and I know all of those things, but this is about how i feel about ms and lemtrada mentally and emotionally in the last 2 days, not about how I feel or want to feel physically. Even my MS nurse said that I need to try to relax, but how can i relax with my mind going a thousand miles per hour each day with a million questions, each one more frightening than the other? It’s the “what if”s that hurt the most I guess. And thinking “what if it doesn’t work?” instead of “But what if it does actually work?” ..

Sorry for the bad feels and poo post.. it’s just one of those evenings I guess.


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1 year ago

Hi Silvia 🙂 Believe me or not, I’m 3 month post Lemtrada, have very agressive MS (calm at the moment) & I’m also overthinker and overworrier. It’s unfair, right? And we don’t even know what’s going to happen next. If it works, it will be a true life changing miracle but before we know if it really works, there’re all these month ahead of constant fear. Months of trying to live normally, pretending that everything’s fine.
We must keep on fighting. We must keep on trying. We must keep on changing the world because no matter what, we’re not alone. There are so many people who are also scared every day. I’m fighting for them, for myself. Please join me and keep on believing.

Polish Silvia

1 year ago

No you’re not the only one that feels that way, I feel like that a lot to be honest. The fear we have, well its understandable, we’ve taken a big risk with this treatment and even though it seems to be working for me so far, there will always be that little voice inside of me that thinks what the hell have I done especially when my depression kicks in. At the end of the day none of us have a crystal ball and we can’t tell the future, we’ve just gotta take it one day at a time and just hope for the best.

1 year ago

@vivy0511 , it’s quite normal to be apprehensive about any big decision in your life. It’s just that no-one really knows what will happen tomorrow, but we all get through tomorrow.

The Lemtrada treatment involves a cocktail of treatments going into your body. It’s not just the Lemtrada, it’s the steroids as well, amongst other things. It will take a few weeks for your body to settle back down and find your new normal.

Be patient with yourself.

1 year ago

Hi there 🙂 I can’t offer any guidance on Lemtrada as I’m on a different treatment path… but I wanted to leave a little message as I can absolutely relate to some of your feelings/worries about medication working and am at a similar stage in life (I’m 26). You’re not paranoid – you’re dealing with the uncertainty of having a medical condition like MS where nobody can give you any guarantees or tell you what’s next. But as an outsider reading your post, it sounds like you’re taking every proactive step you can to give yourself the best possible chance. Being told to relax is all well and good, but in reality you’re entitled to worry! I’m really similar and while I don’t have any magic fixes, I have found that writing things down helps (you may do this already) – it’s particularly good for ‘getting things out of my brain’ before I go to sleep. Someone also told me to be kinder to myself recently and it was a bit of a moment where I realised how harsh I am on myself. I can see somebody suggested patience above, and I’d add to it a bit and say give yourself permission to feel how you feel. This website is a really great source of support too for days like today x

1 year ago

I had Lemrada 3 months ago and its a roller coaster of emtions. I have bad days where I think ill never feel better then good days where life seems good. Stay focused and positive

1 year ago

I am goimg in for round 2 of Lemtrada next week. This past year has been ok to me, minor symptoms mostly fatigue and optic neuritis getting worse. Glad i have round 2 coming up as feel it will help get me better. I too, have been through a load of different emotions but i am trying to focus on positive things, people and experiences which really have outnumbered the worst so far.
I hope you feel better soon and be kind to yourself. X

1 year ago

@billybilo @stumbler @marcyg921 @purple 72 @molineux1047 @northwood28 thank you all for your support and kind words. It feels better to know that I am not the only one that has moments like this. As @northwood28 said, the truth is that the positive stories outnumber the negative ones and I’ll try to focus on those rather than focusing on my own destructive thoughts.

@purple72, you made a good point, I was also recently told to “put the gun down” from myself, as I am being very harsh. I’ve been told that I have set very high expectations of myself and I should take it slower and be patient. I also know that time always makes things easier and maybe in this case the only solution is to let time pass.

Silvia x

1 year ago

I’m probably doing little more but re-stating the great advice that’s already been given to you, but here goes – yes, I agree you’re very harsh with yourself. If it is at all possible, try to indulge yourself, doing things you really enjoy to ease some harshness. You need to give yourself permission, not only to be scared, but to also indulge yourself in small ways that cumulatively might helpful. Try to watch a favorite movie, listen to your favorite music or whatever you really enjoy. Hang in there,I hope all goes well. for you.

1 year ago

Thank you @celan2go. This is what i’ve been trying to do lately. It doesn’t always work but i’m getting there. I tend to bounce back from moments like this and to be honest just the thought that anxiety and stress can trigger a relapse is enough to make me take action. I hope everything goes well for you too! Silvia

1 year ago

Also, remember to try and focus on the things you can control. There are many things we can’t control in this life and worrying about them can affect other things (which we can control). Obviously we want to be aware, but too much worrying tends to be counter-productive.

I’m currently waiting on screening for Lemtrada so I may be back in 2018 with similar concerns.

1 year ago

Thank you @webbexpress x best of luck with Lemtrada, I hope it goes well for you.

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