Last reply 6 months ago
Lemtrada and thyroid issues

Hello guys, so my MS Clinic is thinking of switching me from Rituxan to Lemtrada. The only hesitation I have is the thyroid issue. From what I’ve read here and other places it seems that people with thyroid antibodies or thyroid issues before Lemtrada are most prone to developing thyroid autoimmunity. Has anyone experienced thyroid problems after Lemtrada?

Also, will the thyroid issues be permanent? Will I need medication for that lifelong? Or is it something that can be resolved after a few months?

Thank you

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stumbler
7 months ago

@sunshineee , Lemtrada has had some very good outcomes.

So, which would you prefer, the possibility of living life in a wheelchair or the possibility of having a lifelong thyroid problem, which is easily monitored and can be managed with a pill a day.

If I had the choice, I know which way I would go………….


sunshineee
7 months ago

@stumbler I already use a wheelchair for long distances and a walker for short ones. I am hoping I will get some disability reversal and also the stopping of progression so that my body had a chance to heal and repair.

You’re right about the thyroid being manageable it’s just that I don’t want it to affect my ability to get pregnant cuz I really want kids!


stumbler
7 months ago

@sunshineee , Lemtrada is a family friendly drug. It only stays in the body a few weeks.

Conceiving is more than possible with Thyroid Disease. Have a word with your Family Doctor about this.


sunshineee
7 months ago

Im meeting with my specialist in April and will discuss this with her, thanks. Was just looking for people who’ve had this issue and how they handle it.


stumbler
7 months ago

@sunshineee , I’ll ask @tracyd to give you her personal, firsthand view on Lemtrada.


sunshineee
7 months ago

Thanks @stumbler , I’d really appreciate that


tracyd
7 months ago

Hiya 🙂

First things first I’m nearly 2 years post round 2 and life is fantastic the majority of my symptoms have reversed I’ve the last 3 years. On my profile the links to my blog and the better written year 1 book are there (all the money from the book comes here directly to shift)

Secondly – well on Saturday I was finally diagnosed as having hypo thyroid – it’s on the back of my blood test results – life is no different I have to remember to take a thyroxin each morning but apart from that everything is normal. Also with my monthly bloods I will know immediately if it goes back to normal again.

I’ve acceptef the friend request, happy to share contact details if you need someone to talk to xx


stumbler
7 months ago

Thanks, @tracyd . 😉


sunshineee
7 months ago

Thanks @tracyd


sunshineee
7 months ago

@tracyd can the hypothyroid ever go back to normal again so that you don’t need the daily pill?


tracyd
7 months ago

@sunshineee
This is the 3rd time mines gone funky, the first time for one month, the second for 2 months a year later, I’ve changed doctors now and after 2 months my doctor put me on meds … could be fine next month so I’m not concerned.
3 years ago, I was losing my sight, walking with sticks and sometimes using a wheelchair …… all things considered a little pill once a day is infinitely preferable.


sunshineee
7 months ago

Oh wow, so big improvement @tracyd , how’s your walking and vision now?


tracyd
7 months ago

@sunshineee
My waking stick lives in the coat rack in the hallway and my eyes are just as crap as they’ve always been but I have my driving License and with my contacts my sight is better than 20-20


sunshineee
7 months ago

@tracyd that makes me so so happy. They said it’s best to get Lemtrada early on, I’ve had MS for 7 years now, do you reckon it’s still worth it?

How long did you have MS for when you received Lemtrada?


tracyd
7 months ago

@sunshineee
It’s absolutely worth it.
Have you seen Charly’s story in Lem for MS? She’s a grandma who’d been diagnosed for nearly 20 years and an absolute inspiration 💋


sunshineee
7 months ago

@tracyd I will have a look at her story today, thanks xo


mermaidia11
7 months ago

Lemtrada is no protection against ending up in a wheelchair. That’s a sweeping generalisation with respect .

And life in wheels is actually fun and energy saving – a blessed relief for me actually.

What about quality of life?!It’s not been used for ms long enough for the long term outcome for quality of life, but if there is I’d be interested to read it.

And what about the risks of developing other long term, annoying conditions? Rather high. Chemo is to save your life, and we ain’t dyin!

My view? Don’t destroy the best years of your life taking chemo to fix something that it can’t: is my opinion(please don’t be too harsh on me!)

But incurable is just that; and quality of life is way more important. My greatest achievement is my children – they are a joy and a gift – don’t compromise that or them – if I’d have done what they said I should do – then they wouldn’t exist

And Lesions or lack of them don’t always correlate with symptoms or lack of them either – and the mechanism is complicated.

Just offering a different point of view……


sunshineee
7 months ago

@mermaidia11 Lemtrada from proven clinical trials and many personal accounts really halts progression. Maybe Life in a wheelchair is fun for you, it’s not for me and it’s not where I envision myself. I don’t have kids, I need to get MS in check in order to move on with my life and have kids. Also, Alemtuzumab/Campath/Lemtrada has like a 20+ year history, it’s been given off label for MS in the UK since the 90s. Lemtrada is NOT chemo, you don’t lose hair, and it targets your lymphocytes. The other parts of your immune system remain intact.

Thanks for your point of view but I was really asking a question about thyroid and people who are on this drug. There are trade offs with everything in life.


mermaidia11
7 months ago

Sorry yes I shouldn’t have replied -im not on lemtrada, and not technically in a wheelchair, I just use it to lean on and sit if I’m tired. I should have clarified that.

I can still get up and down my 3 flights of stairs/drive/shower etc!
My mobility aid of choice is actually a wee scooter. But now I’ve had experience of all I guess what I was trying to say was that it’s not all bad and makes life a bit easier- and so therefore shouldn’t be feared.

I just wanted to offer an alternative view, given that you are weighing up the options. More than anything, I don’t want it to stop you from having a family.

No, it’s not chemotherapy per se, but Its still extremely toxic and the long term ramifications, in my view don’t justify the potential long term damage. It’s been used for a long time as a cancer treatment for lymphoma, but I didn’t realise the mechanism was slightly different, but glad it doesn’t cause hairloss.

“Important complications following this – (campath) treatment included cytomegalovirus reactivation, bacterial infection, and invasive aspergillosis infection.[20]

Acute invasive aspergillosis occurs when the immune system fails to prevent Aspergillus spores from entering the bloodstream via the lungs. Without the body mounting an effective immune response, fungal cells are free to disseminate throughout the body and can infect major organs such as the heart and kidney

It is estimated that most humans inhale thousands of Aspergillus spores daily, but they do not affect most people’s health due to effective immune responses. Taken together, the major chronic, invasive and allergic forms of aspergillosis account for around 600,000 deaths annually worldwide.

What maybe the long term effect of alemtuzumab in MS…?

What happens in the long-term after alemtuzumab. The simple answer is that we do not know?
In this report, the study looks at the bloods 20 years after alemtuzumab and it is clear that the cells numbers in the bloods do not revert back to normal.”


imbarca
7 months ago

@sunshineee I had thyroid issues before Lemtrada (overactive 15 years ago which got better, then underactive after my first child). It’s perfectly possible to have children with thyroid issues, you just need to make sure your levels are in range. Unmanaged thyroid conditions are horrid, but they are usually very manageable and you’ll be closely monitored.

Taking Lemtrada is certainly a risk but leaving the MS to munch away at your neurons seems riskier to me. I have to say that so far it has not stopped progression for me with mobility (I’m 12 months post rd 2). I have foot drop and quad weakness and it’s got steadily worse. I suspect that this is due to spinal lesions where there’s no capacity for repair. I’ve also had it longer than you; 11 years when I started rd1. However I have improvements with vision, balance, cog fog and tinnitus. I also feel better, just more like a well person with a disability than an ill one.

I have had thyroid issues since treatment, it went from its usual underactive to overactive, but I’m being treated and it is fine. Good luck with your decision.


sunshineee
6 months ago

@imbarca thanks for the response. I too have quad weakness and it’s more muscular weakness than neurological. I’m trying to build up my muscles at the gym. Do you exercise at all?

Yes Lemtrada is a risk but I’ve heard so many positive things from so many people..


imbarca
6 months ago

@sunshineee I don’t really know how much is neurological. I have atrophied muscle on my right side (quads, calf muscles and glutes) that doesn’t really seem to respond to exercise so probably more neurological I guess.

I do physio exercises, exercise bike and the Wii. I’ve had a long period of not doing so due to Lemtrada recovery, broken arm and the flu and I’m finally starting to build up my strength again. It’s hard work but satisfying to see some improvements.

I wish all the best with Lemtrada, I did feel anxious about the risks but I knew that I had to try everything to beat this stupid illness!


sunshineee
6 months ago

Yes @imbarca, I’ve got a lot of muscle weakness in my quads, hamstrings and glutes, it seems to respond to exercise but ever so slowly. I wish you luck on your road to recovery as well, and that’s my idea hit MS hard!


beefree
6 months ago

This trade-off, between high likelihood of preventing future relapses at the cost of gaining a new condition, is also what troubles me when weighing up Tecfidera v Lemtrada. One of the motivations for me wanting to run hard at the MS is to protect cognition. In October, I experienced distressing bouts of reduced memory recall that were temporary but severe. Permanent damage to cognition would be more threatening to my career than loss of mobility, so for me, a pill a day to manage my thyroid is probably preferable to the higher cost of losing what I’ve worked so hard for.

Thanks for posting @sunshineee, look forward to hearing how you get on.


sunshineee
6 months ago

Yes @beefree, a pill a day instead of steady progression and cognitive deficits is a good trade off. Plus you don’t have to end up with thyroid, it affects 34% of patients, who’s to say we’d be part of that 34%? I’m taking vitamin d3 everyday to prepare for Lemtrada, vitamin d3 is very important and can combat autoimmune conditions and acts as an immune modulator, plus with blood work done every month we’ll be monitored pretty closely and thoroughly. This drug has been a game changer for so many people! I see my MS Nurse to discuss Lemtrada this coming Tuesday, I’ll post about it to let everyone know how it went!


imbarca
6 months ago

@beefree I gave myself a 10 month trial of Tecfidera before switching to Lemtrada (with a couple of months ‘wash out’). Depending on how long you have had MS, you may want to consider it. I didn’t have bad side effects from Tecfidera but I didn’t have any good effects either and had a relapse. However some people have had great results. My MS didn’t respond to it, yours might. It’s easy to forget that the ‘50% reduction in relapses’ for any given drug are just an average; it doesn’t work at all for some but works 100% for others!

If you go for Lemtrada, it’s not the thyroid conditions you need to worry about really, it’s the much less likely but much more serious risks that you need to decide if you’re willing to take. Good luck with your decision.

@sunshinee I hope your appointment goes well, let us know ☺


imbarca
6 months ago

sunshineee
6 months ago

Thanks @imbarca I will!

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