@Joanna 

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Joanna

Lemtrada Course 2 & overactive thyroid

I had my first Lemtrada infusion in December 2014 and found that in the months after my walking improved, the pins and needles in my hands and feet were significantly reduced, my fatigue levels decreased and I could once again enjoy a hot shower. An MRI carried out in August 2015 found evidence of a single new lesion probably associated with relapse activity in the months prior to my first course of Lemtrada, with an absence of additional activity suggesting that I had been relapse free during the preceding eight months. Despite these obvious benefits, during September 2015 I experienced a sudden deterioration in my symptoms which included very high anxiety levels, problems with my walking, leg trembling, rapid heart beat and night sweats. My thyroid had been tested at the beginning of September and was fine, however when I undertook tests in November 2015 (I was due to have my second course of infusions in December 2015) it was found that I had developed an overactive thyroid (Graves Disease). As a consequence, the second course of Lemtrada was delayed, I was referred to an endocrinologist and I began a course of ‘Block and Replace’ therapy for my overactive thyroid. The medication prescribed for the overactive thyroid considerably improved the symptoms that I had developed and with my condition stable I was admitted for my second course of Lemtrada. This was conducted during February 2016 and comprised three days of infusion, with the hospital experience being shorter yet largely the same. Since being discharged from hospital I have essentially been fine, however I have found that the hives, headaches and jaw aches were more volatile than after the first infusion. That said, these feelings seem to have gone now (1 week on) and instead it’s just tiredness, chills and a dry cough. When I had my first course of Lemtrada there was relatively little information on the internet, however now there is loads. Unsurprisingly, I’ve found that most of the accounts are regarding the first course of Lemtrada, with a general lack of information of what to expect of the second course. In addition, I haven’t come across many accounts about thyroid problems related to Lemtrada so I thought it might be useful if I put my experience on here. Above all, I’d like to say that despite how intense and complicated taking this medication can be, I am so pleased to be prescribed it as the benefits for me do seem to far outweigh the negatives. If you have any questions about my Lemtrada experiences then please let me know, I’d be more than happy to share things with you.
@Gilbo

Thanks so much for posting. People sharing their experiences is proving invaluable. Good luck with everything x

@Monica2015

Hi @joanna, thank you for sharing your experience. May I ask whether the Graves' disease had been overlooked in the blood and urine samples you provided monthly? Additionally, is the medication taken for life, and have all the MS symptoms now totally receded now? Was this due to the steroids or the thyroid med in your opinion? Thank you, Monica