marpckr 10/02/17
Last reply 7 months ago
Lemtrada first round treatment

My son has replasing MS and he has had four treatments of the first round of lemtrada. He went to have his fifth treatment today and because he had shortness of breathe last night and a rash they would not do it. He shortness of breathe has disappeared and the rash is nearly gone. His specialist is away at a clinic today so they rung the registrar who said not to go ahead today. They will ring him as soon as they get in touch with his specialist and let him know what is going to happen. He is very disappointed and I was wondering if anyone else has had the same thing happen. Also what happens if you dont complete the first round of lemtrade? Thanks

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stumbler
1 year ago

Hi @marpckr and welcome.

Obviously, the medical team are erring on the side of caution, which is never a bad thing.

I’ve not heard of anyone in a similar position, but it must have happened. Try contacting your local MS Society and posing the question to them.


sandwich
1 year ago

They are very common side effects but I can only assume they have stopped for good reason. I’ve known people to have a day or so off in between before finishing the course, or have it infused slower, additional days of steriods etc.
On day 5 I had a further course of steroids due to a bad rash and shortness of breath. Both were short lived.


marpckr
1 year ago

Thanks I will let my son know. He was really disappointed that he didnt get the fifth dose. He just wanted to finish it all in one go. The medical staff at Canberra Hospital have only given Lemtrada three times and the people had no reaction so they were being cautious and just my son luck that his doctor was at a clinic.


james32
1 year ago

I had my first round in October and had the course over 2 weeks as my liver levels went sky high after day one. It may be the case that once contact has been made with his specialist that he has his 5th day next week.


ashory
1 year ago

I hope your Son got his 5th dose!! I can’t imagine how upset he must have been!


tracyd
1 year ago

Oh dear – I hope that they are sorting out the final day of treatment. They’re just being cautious but it’s incredibly frustrating. Keep on at them and keep insisting that they complete the treatment and improve their knowledge of what is whilst not ‘normal’ it is an ‘expcted’ thing during the treatment xxx


doodles
7 months ago

My Boyfriend had his 5 treatments last week and they were prepared for him to be short of breath and tightness in his chest and had inhalers on hand for it. However now he is wondering how long it will last.

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