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Lemtrada

I hope my post might be useful for others. I an 46 years old and diagnosed with RRMS 12 years ago. A typical wait and see what happens case, I had no treatment.

My constant symptoms include, double vision when tired and looking sideways, lethargy, balance problems like vertigo, pins and needles, and various totally numb areas over my body. My mobility is generally okay.

After having 2 relapses last year, which worsened my symptoms. I had a chat with my neurologist about lemtrada. I was concerned about getting worse and all the new research that was coming out suggested that ‘time was brain’ and as I’d had nothing than maybe it was time.

So, 3 weeks ago I went to hospital for the 5 day treatment. Walking in and feeling my usual self was quite concerning as I did worry if I was doing the right thing. I had the pre steroid infusion for all 5 days as I had developed a terrible itchy rash, Iv piriton worked wonders but I looked and felt terrible. Especially on discharge. I needed a wheelchair and felt so sleep deprived ( 5days with very little sleep due to a very busy neuro ward with very confused patients with basic nursing care non existent , I had to do my own obs whilst on the infusion!)

It took me 3 days before I stated to feel slightly better. Here I am 3 weeks later. Still have my same old symptoms, but I can walk the dogs again now for around half an hour. I do get a itchy rash after for half an hour or so, but goes by itself. I am on antibiotics for UTI. I am seeing my neuro nurse next week for the first monthly check up. Just hope it was all worth it :slight_smile:

Hi thank you for the information. I had 5 relapses in 2015 so started on Tysabri in November. I am JC positive so worry about possible PML but I’ll take that chance as I know if Tysabri doesn’t help I can give lemtrada a go. It’s useful to know what to possibly expect if I do have to use it.