Hello everyone, haven’t posted in a bit, it’s been 1 month and 2 weeks of Lemtrada. I remember I was so scared of getting Lem and the side effects and infusion reactions, but thank God it wasn’t as bad as the horror stories I’ve read online.
The infusion was easy for the most part, I would get very itchy but that would stop once the nurse gave me Benadryl, the nurses at the infusion center were all so nice. One week after the infusion, I started to get extremely painful headaches with throbbing pain at the temples, it was so painful that I had to go to the ER. The ER doctor said that this was a common reaction with some infusion meds, to experience headaches one week after infusion. She put me on a regimen of ibuprofen and Tylenol every four hours. This lasted about 4 days and then the painful headaches went away.
I do feel a little more weaker then before Lemtrada, maybe by like 10-20%, but this again seems to be a common reaction that doesn’t last. My MS nurse said that at the one month mark is when many of my lymphocytes are completely obliterated so it’s common to feel tired. I also had someone from Lemtrada come to my house and take a blood and urine sample, she was nice as well.
I’m hoping for the best and I’ve read great things about this drug from so many people. There are people with halted progression, clear MRIs, people becoming active again. It’s definitely a journey and not a quick fix though. My MRI is due next year in January so time will tell.
I’d love to connect with more Lemtrada patients as well and hear their experiences, so please feel free to post and tell me about yours. XO
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