Lemtrada and side affects

Hello everyone, I got diagnosed with MS 5 years ago and have tried rebif and fingolimod and neither seemed to work for me. My Neuro thinks that the best option for me would be to have lemtrada, I have looked into it and am happy to have it but I just wondered if anyone had had any severe side affects from lemtrada? R x

I’ve had both doses now. I’ve been fine and recovered from the treatment quickly on both occasions. I finished my second course at the end of May and have just started my new full time job.

Since starting Lemtrada I have been diagnosed with an under active thyroid and take medication for this. Its no issue and I have no side effects from it, in fact since starting the thyroid medication I’m less tired.

I’ve had a lot of UTI’s. Its questionable if this is a side effect of the treatment as I think I’ve always suffered with them. I suspect the monthly screening tests are just picking them up where before I ignored them and never went to the GP.

In respect of MS its been stable. My last MRI showed no progression or loss of brain volume. No relapses as yet.

For me this is priority. Side effects I can handle, poor mobility, decreased cognitive function, loss of earnings, pain and social isolation are not things I want in my life and I will continue to opt for aggressive treatment for this reason.

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Thankyou for your reply, did you suffer any side effects whilst you was having the infusions? My Neuro said that I would be really ill and have symptoms of all my past relapses.

You might put lemtrada in the search box - there are lots of threads about it. Here is one describing both good and (very) bad experiences:

My 1st year I only had mild side affects. Rash, a little throat swelling, GERD, and flu like symptoms. My second year (a month ago) I had full anaphylactic reaction(almost stopped breathing) with pneumonitis, but I think that is not common. 0.5 percent or so for pneumonitis. I have been reacting for a full month with angio edema, severe throat and tongue swelling, shortness of breath, and hives. My mom has MS as well and had Lemtrada with no serious problems. She still has GERD and some bowel issues and her thyroid is giving her trouble but nothing serious. I know it sounds crazy but my sister has MS as well- worse off than me. She had Lemtrada with no allergy but her Thyroid has stopped working.I’m not trying to alarm you. Just letting you know. The good news is I have less lesions in my brain sicne Lemtrada, I feel like my memory and cognitive skills are better, I do not shake anymore, and I havn’t had a seizure. I guess for me so far the benefits have outweighed the risk. Now for me to get over the reaction. Im still taking steroids and loads of antihistamines and my Dr. believes it should be over soon. My sister is the worst of the three of us because she has not seen any improvements and seems to be getting worse everyday. The thyroid problem has only fuelled the fire and added to her problems. I wish the best for you. Just know I was scared for a few days with ER visits and hospital stay.