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Anyone Received Lemtrada Treatment? Have Any Advice?

Anyone Received Lemtrada Treatment? Have Any Advice?

I'm currently in the process of deciding on what treatment is best and I'm contemplating lemtrada.. I'm just worried about the side effects of it.. does anyone else have any stories of their treatment or how they came to make a decision? I also wondered..I know it's a little taboo but anyone used cbd oil? A couple of ppl I know have raved about it but I feel like my body has given up working and I'm scared about what to do next or what to try can anyone advise? Thanks everyone 😘💕

posted November 15, 2018
A MyMSTeam Member

I finished my second Lemtrada infusion November of 2017. Was diagnosed in August 2016 with aggressive ms so my neurologist really thought I had to try it. Haven't had any new lesions since the first treatment. Did acquire hypothyroidism but I believe they say people with ms might usually have that too. Just thankful it has stopped any more lesions from forming!!!

posted November 17, 2018
A MyMSTeam Member

I was also struggling with going with Lemtrada.Last year I tried Copaxin and Betaseron.Both didn’t do me any good.Then my neuro said lets do Lemtrada.I thought about it for a couple of months.Then she told me you’ve got MS in one hand and you know it won’t get any better and in the other hand you have got Lemtrada.I said lets do it.I did my first round in July and only had dull headaches for 5 days.So far no side effects.I feel great.MRI in December for 6 month followup on 1st round of Lemtrada.

posted November 16, 2018
A MyMSTeam Member

Thank you this was so helpful and I'm super happy you're doing great after lemtrada 🙌 let me know you get on with your mri 😊xxx

posted November 16, 2018
A MyMSTeam Member

I was given the option in October last year of either Tysabri or Lemtrada. I wasn't keen on either to begin with - monthly infusions for however long with Tysabri and potentially get a brain disease or Lemtrada - have no immune system for a while and the complications that came with it. Eventually I went with Lemtrada - a 2 year course of treatment and be treatment free afterwards.

I received my first round in March this year. The only reaction I had from the infusions was a rash that came up on the last day but that cleared up after the flush of antihistamine. They are long days though and are very tiring. However, the first 4 weeks after the infusions I had experienced headaches every day and felt so tired all the time it was a monumental effort to get up to go to the toilet.

It took 6 months for my lymphocytes to reach '1' which I am really pleased about. The ball is rolling for my 2nd course of treatment in march next year and then i'll be finished with it.

Everyone reacts differently to the infusions so don't worry too much about what you might read online. The treatment has enabled me to do things that I struggled with last year.

Good luck to you xx

posted November 16, 2018
A MyMSTeam Member

My Lemtrada infusion was May 2018 and I really do not know what to expect as of first day of treatment to current. I have had MS since 2010 and I had some knowledge of my MS personality but now after treatment my MS personality has changed. I am not better or worse. Although, I have been recovering from surgery and extreme iron deficiency after infusion which I had this issue before Lemtrada treatment...I was expecting some MS improvement.

posted December 10, 2018 (edited)

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