Lemtrada and Graves disease

Everyday living
1

I have had two course of Lemtrada, last one 2017. A year ago I developed an overactive thyroid which apparently is a common condition caused by Lemtrada. But I am surprised to find no information on this forum.

It is now classed as Graves disease and I also have thyroid eye disease which makes all my MS eye problems much worse.

I am taking carbimazole and I find I am feeling so much worse than I ever did. Really fed up and wish I had never had lemtrada in the first place. Any other folk on here finding the same?

2

Hi Damaris, just googled Lemtrada and Graves disease, as I didnt know much about them.

I see lemtrada is a DMD for RRMS. Yes, there are some nasty side effects.

I`ve often read about side effects and DMDs. There must be some people who feel it is worth the risk to gain a benefit from them.

I dont have any advice to offer but just wanted you to know someone is reading yourr post and feeling concerned for you.

Boudsxx

But sadly not everyone, like yourself, is in that category.

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Hi again. Just googled carbimazole…have you told your doctor how you are feeling? I think you should love.

Boudsx

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Hello Damaris

Graves Disease or Hashimotos (underactive thyroid disease) are both known potential side effects from Lemtrada. It’s bad luck for you to get Graves. (I had Graves Disease in my early 20s - way before MS.) It ought to be correctable with medication, but it’s not that easy to get the dosage right for any individual.

Have you been offered any alternative treatment for the Graves Disease? I had surgery to fix mine when I was 22. At the time there was also treatment with Radioactive Iodine available to correct Graves, but they wouldn’t give that to me because it can make a woman infertile (I told the doctors I wasn’t planning to have children but they thought I’d change my mind - I’m 53 now, I never did change my mind!)

The surgery I had is called subtotal thyroidectomy. Essentially, the surgeon removes most of the thyroid gland. Typically, they remove slightly more than necessary - this is deliberate as it’s relatively easy to treat an underactive thyroid than overactive. Mine has now been underactive for about 25 years. I take a daily thyroxine pill and every couple of years have the levels checked. I have no side effects from the thyroxine and no symptoms from the underactive thyroid.

I’m surprised you weren’t aware in advance of the Lemtrada infusions that your thyroid could be affected. It’s a very frequent side effect. Both the Lemtrada info on this site and the MS Trust site list it as very common and something that patients should be aware of before starting Lemtrada. Perhaps you were told about the possibility, but not in sufficient detail? Or maybe as you wanted to prevent MS relapses, anything was worth it? Or maybe the medical staff simply omitted to tell you about the possibility?

You could try talking to your doctor (ie, the one you see about the Graves Disease) about alternative treatments? If you’re not seeing a thyroid specialist, perhaps you could ask your GP to refer you?

Sue

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Hi Bouds

Thankyou so much to listening to me, just having a good moan to someone helps. Yes I also see a thyroid Dr now, been on carbimazole for a year now, hopefully things will settle.

Damaris x

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Hi Sue

Thanks for your reply. Yes my MS nurse did tell me my thyroid could be affected but played down how much by saying, don’t worry if it is you can take medication to make things right.

I see a endocrinologist and have been on the medication for just over a year. Think I will explore the thyroidectomy or radioactive iodine route.

I believe one of the reasons Lemtrada treatment was suspended was due to how many people had a thyroid problem after. If only i could turn back the clock I really wouldn’t have had lemtrada as my Ms is so much worse now and exacerbated by the thyroid problems.

Thanks

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Hi again

I suspect your nurse did underplay the potential for autoimmune thyroid disease because many people end up with underactive thyroid which is easily (or much more easily) corrected by drugs. It’s simpler to add more thyroxine to a person rather than take it away. Or maybe s/he didn’t realise just how nasty thyroid disease can be. Which is why you’re having the trouble you are now.

What the disease modification drugs have to do is adjust not just your thyroxine levels, but the thyroid stimulating hormone (TSH) too. I think this is why it’s so difficult to get the dosage right. In addition to sorting out the thyroxine, there is the complication of your symptoms to try and correct too.

Lemtrada is so often an absolute miracle drug for many people with RRMS, I would have been tempted by it (were it not for the thyroid problems and had it been available to me - it wasn’t!). So many neurologists and MS nurses do ‘big it up’. The trouble with all DMDs is the potential for side effects, and often by the time you find out just how bad they can be, it’s too late.

I’ve had bad side effects from 4 different DMDs - luckily none of them permanent or extremely long lasting. So I really do sympathise with you. Graves Disease is a bugger of a complication. I remember being shaky, having palpitations, getting out of breath going up a flight of stairs or a hill, and being constantly starving. I (unusually) put on tons of weight because I just couldn’t stop eating chocolate and other bad stuff! Mostly people lose weight rather than put it on.

The operation to correct the Graves was simpler in retrospect than I might have feared. It involves them cutting across your neck, removing a lot of the thyroid and the stapling it back together. (It might be a lot more straightforward nowadays - this was 30 years ago!) I looked a bit like Frankenstein’s monster for a while after, but within about a year the scar had faded; now you can’t tell it’s even there.

I did lose my voice - a side effect I wasn’t warned about. The risk was apparently always there - they cut the nerves to one side of my vocal cords. I whispered for a few months, but regained my voice soon enough. I just can’t sing in tune anymore.

I very quickly lost the excess weight, now that I’m badly disabled by MS (which I’ve had for 23 years). I’ve put it all back on again of course. But I did spend a good 20 years being thin and able bodied.

Hopefully, you’ll soon be able to get some decent treatment that will sort out the thyroid problems, and your eyes too. Maybe then you can take a different DMD - one that’s got the potential for less serious side effects.

Best of luck.

Sue

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I think more info should be available and impressed on people before DMDs are given.

I know there are many stories on here about how wonderful they can be, but for those who suffer serious side effects, I dont believe the risks are worth it.

Boudsx