Last reply 2 months ago
Lemtrada has made me worse.

Hi,

I’m new to shift ms and just wanted to share my experience after completing my course of Lemtrada. As Lemtrada is the leukaemia chemotherapy drug, it was quite scary to think I was putting Chemotherapy into my body to destroy the T and B cells that are responsible for giving MS. After about 2 weeks from the first 5 day course I had a relapse. I had not had a relapse for years and found this drug counter productive. I spoke to my Neuro and said this drug that is supposed to reduce relapses by up to 80% but had clearly failed. He advised that I need to complete course in 1 year. Well 1 year later and I have completed the course and feel like I am relapsing again! I am struggling to get around again. I have tried Tecfidera and had a negative reaction. I’ve tried Tysabri and had negative reaction and now this chemo drug. As I look back over the 22 years with this condition, I believe I would have have better off not taking any of them and would probably be more mobile than I am now. However the only medicating product that I have found that gives me back a life and a 70% improvement in mobility for a few hours is Alcohol. I have 2 bottles of beer ever few weeks and the result is miraculous. I would be interested to know other people’s experiences with these dreadful drugs.

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stumbler
3 months ago

Hi @russ9141 and welcome.

I’m sorry that you feel that you have had bad experiences with the Disease Modifying Therapies (DMTs) you have had to date.

Looking specifically at your Lemtrada experience, I would suggest that the Lemtrada was not directly responsible for your relapse within two weeks of the first round of infusions. This probably started prior to the infusions, possibly by the “Tysabri rebound” or the stress of starting this new treatment.

The second round of Lemtrada, a year later, is a standard part of the Lemtrada protocol. These infusions are a big hit to your body and it’s not unusual for your body to feel this effect over the following weeks. This is one of the reasons why a water intake of 3 litres daily is recommended, to help the body flush the drugs through.

It’s counter-productive to look back and play the “what if” game. The course of MS is completely unpredictable. Yes, you may have been relapse-free over the years, but there must have been some reason to step up your treatments through Tecfidera to Tysabri to Lemtrada…….


Anonymous
3 months ago

Hi, Stimbler,

My neurologist agreed it was a relapse, probably caused by the drug and that it is common for Lemtrada to cause this. 2 litres a day was therecommendation water intake. The reason I was offered the infusion was to srrrdt it whilst realkcy well after 22 years. Thank you for your comment


Anonymous
3 months ago

also Stimbler, since I started the meds the condition had worsened. They were trying to arrest the condition whilst it wasn’t really effecting me 10years ago But I think I may be in the wrong group, I thought I was joining a group that was open to expressing my experiences, rather than a complete stranger telling me what in their opinion I might be experiencing….over a neurologist with many years of experience and yet told to keep my opinions to myself. That is unhelpful. I wouldn’t mind but it was my only post to this group! Lol


mermaidia11
3 months ago

I wish more people like you would speak [email protected]/@anonymous

Thank u and respect to you for doing so.

It’s not that you feel it’s made you worse, you know it has?

Experience counts for a lot more than ‘independent’ drug trials. They can never address QUALITYOFLIFE, which is by far the most overlooked consideration in my view.

You must feel conned and deceived, because you were told that this would be the mythical insurance policy to freeze ms

Yes, heard it all before, and like unicorn shit, I will believe it when I see it.

The game of life is quality of life, not how many blobs on an X-ray.

Anything that compromises that , whilst purporting to help , is indeed a bitter pill to swallow.

You must feel cross.

But hindsight is a wonderful thing.
You made a decision to take it on the information given. I would feel like you surely do, very angry now.

There is nothin worse then feeling you have made the wrong decision’ if ihad known then, what I know now….’

So please stop beatin yourself up.
(One of the reasons I didn’t take one was because I was too scared to)
You were very brave In your decision to even take one, remember that love.

Only those with strong immune systems and constitutions of well connected ox’s; ever bounce back.
It is a gamble, and a very big one to take. And u thought you were doin the right tbing, so don’t be hard on yourself
I extend to you a hug for being a ledge.
For speaking out
Despite how your present medical condition is not having a significant effect on your daily quality of life.

I hope other people post their experiences of their quality of life before and after dmd ‘treatment’

You have inspired a debate QUALITY OF LIFE I hope, based on actual experience from real people who have taken them. ( and if knowledge is power, well we have to also bear in mind that this site is sponsored by 15 drug companies, one of which makes lemtrada.
Funnily enough, it also doesn’t like MSrs over 40. The experienced ones. Go figure. )
Thank you for speaking out
Hopefully a balanced provocative debate will ensue.
Well done mate
(And start writin that 📖book)
✨👍👏🌈☮️💕✨


itsallinmyhead
3 months ago

I had round 1 of Alemtuzemab May 2016.
At the end of the 5 day course I walked out of the hospital like a newborn deer rather than with a slight foot drop like when I went in. Six months after that I bought my first walking stick as I realised it wasn’t getting better. My Dr refused to go round 2 thankfully. I found out from my MS nurse there have been quite a few cases like mine. I haven’t felt my pre Lemtrada self since the day I left round 1. I now keep a wheelchair in my car. I know that the stick and wheelchair are not my imagination so I don’t want to discuss relapses and coincidence.
It was a long and emotional road to will fully commit to a drug that had such a lot of 35% risks of scary side effects. Had a 35% risk of worsening disability been in the leaflet it would have been a dealbreaker and a hard no from me.


imbarca
3 months ago

Hi @anonymous I’m sorry to hear that Lemtrada has made you worse. My understanding is that for those of us who’ve had the disease for a long time is that this does happen. We have accumulated a lot more damage than the younger and newly diagnosed so when we have this very strong drug that causes massive inflammation, it makes us feel pretty awful. I felt awful after round 1 for approximately 8 months and the same after round 2. I’m now 18 months post round 2 and feel good.

Is my mobility worse than when I started? Yes. But my mobility was getting worse every month anyway and I think it has slowed it down.

So, on the downside; I have spent the best part of 2 years feeling crappy. My walking is worse than when I started. I have to comply with monthly blood and urine tests. I’m at significant risk of acquiring extra autoimmune disorders. It hasn’t been the miracle cure that it has for others.

On the upside; I feel ‘well’ for the first time in years. Hard to explain, this one, but I used to feel like a sick person but now I’m more like a well person with a disability, I suppose. I have more energy. My thinking is clearer. I have been able to sustain a physio programme and make some gains. I’m increasing my work to three days a week. And I know that I’ve thrown the medical version of the kitchen sink at MS. Which means I’m not stressing over DMD decisions and I’ve taken more responsibility for taking care of myself through diet, meditation, exercise etc.

What I’m trying to say, @anonymous, is don’t give up hope. I had serious’buyers remorse’ – post-decisional dissonance – in the months following each round. But it got better. You’ve done everything you can medically, now, so time to be kind to yourself. I hope you begin to feel better soon.


imbarca
3 months ago

@itsallinmyhead I’m so sorry you’ve had that experience. I agree that it’s not made clear that we could see an acceleration in disability. There have been one or two on the UK Facebook group with similar stories, all of them with long standing diagnosed (8 years or more). Which is particularly difficult when the next person to post is throwing away their walking stick and running a marathon…

It is hard to know what where we would be if we’d made different choices and living with regret is a difficult thing. I wish you all the best on this unchosen journey of ours.


itsallinmyhead
3 months ago

Thanks for your concern @imbarca. I’m quite at peace with my decision now that I’ve adjusted. It’s hard to place blame or feel long term remorse when you’ve made a deal with the devil (dmd’s) with a clear head. In hindsight I’d rather not have started any drugs as my MS wasn’t very aggressive. Every drug I started and then stopped, left me worse off disability wise. I now am dubious of them all. I’ll save the big gun drugs for later/never. I don’t think they’re for me.


imbarca
3 months ago

Good for you @itsallinmyhead. I do my damnedest to live without regret or guilt. They really are the most pointless and self-destructive thoughts/emotions. Making peace with yourself and your illness is a very good thing for both mental and physical health. Respect.


Anonymous
2 months ago

Hi @anonymous I’m new here too. I’ve had two rounds of lemtrada (last one in June 2017). And honestly feel it has affected me badly too.
It’s right what other posters are saying that the neuros seem to push to the 70% reduction in relapses and stress the major auto immune illness as side affects BUT I don’t think they even know/ worry how it’s affecting quality of life.
I am sure they will listen one day, I keep telling them I’m worse, thankfully just increased fatigue plus arthritis and hypothyroidism so far for me. I really think they are just happy that the treatment hasn’t killed me and I’m walking around. I too wasn’t that bad before the treatment, only had two relapses, now my health and energy levels are awful and deteriorating quickly.
The MS nurse placates me at every monthly meeting and tries to cope with the symptoms but my lymphocytes are static at 0.6 and nothing seems to worry the neuro about that.

Oh dear, I could go on. I feel people need to know about the big downside that is not discussed anywhere, it was too strong for me and I feel permanently affected by it. My problems are not MS any more thankfully but still…..I wished I had taken a more gentle DMD.

I do wish you well! 😊


dinnerlady
2 months ago

Hi everyone need your help. Just been offered Ocrevus by my neuro problem is I am taking l.d.n. my neuro says it is dangerous to take them together but my doctor says as l.d.n is not a drug it.s ok who do I listen to???


stumbler
2 months ago

@dinnerlady , I think you need a new Doctor! LDN is only obtainable from a pharmacy, with a private prescription. That sounds very much like a drug to me!

However, I don’t have a view on the advice of the Neuro. Perhaps you could contact the LDN Research Trust (https://www.ldnresearchtrust.org/contact_us), as they may know the answer.


jasfromtas
2 months ago

I have completed both courses of Lem (2015 and 2016) and had a pretty rough trot of it – the first time it put me in hospital for a week and inpatient rehab for 6; so yeah I hear you – the way it was explained to me was that when Lemtrada knocks off all the T and B cells they release a bunch of cytokines and histamine inflammatory stuff and these are what irritate the lesion(s) that I already had (for me, all through my spine) so I essentially had a relapse like all my previous relapses. (like the inflammation they see with the infusion (rash) but in my CNS)
It took a while to recover from. Round 2 was better (but not a walk in the park – unlike some people who seem to breeze through it (envy!) – I guess like someone indicated above, the earlier/less disability you have, the better).
For me it has done the trick in terms of relapses though – I have had no infusions since Oct 2016 (2 years almost) and am relapse free. I was previously relapsing badly through tysabri and gilenya (spend months in hospital with each relapse) so feel like I am getting my life back on track. I have not had a reduction in my disability, but it is stable, so happy with this.


jasfromtas
2 months ago

* prob should clarify* – there was no ‘new’ damage done in either instance (so prob a pseudo relapse rather then an actual one), just highly irritated lesions (this is just my experience, know it could be different for everyone), due to the inflammatory release of T and B cells dying. Cheers Jas


mmhhpp
2 months ago

Hi @anonymus

Sorry to hear you are going through this

I wonder if you have now entered spms phase which these drugs i think wont stop it

I was on fiingolimod from the very beginning which worked 5 yrs and did nothing at rapidly degenerating the following 2 yrs…..

I think lemtrada might have been good to stop any possible remaining activity. What did mri before lemtrada said? Any activity?


stumbler
2 months ago

Nice to see you back, @jasfromtas .

It’s good news that you are now stable, even it was problematic getting there.


jasfromtas
2 months ago

@stumbler good to be back 🙂 though I have snooped around a little bit so not entirely absent haha!

Hope you are keeping well? Haven’t changed your shirt I see (in years)


stumbler
2 months ago

@jasfromtas , Ha Ha! I’ve changed the shirt, just not changed the photo. It helps retain my youth! lol

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