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Infusion related side effects/allergic reactions.

Posted: Mon Oct 27, 2014 12:01 am
by sofia
I finished my first lot of infusions Friday, today is Monday morning.

I am feeling pretty shite. I am tiered, itching, stinging, blotchy (comes and goes), feeling old ms symptoms. I know it is early days, and I think this is expected side effects, but I don't know.
One of the neurologists said it would be though, another one didn't expect it to be too bad.

How long can I expect to feel knocked off my feet? When should I expect my symptoms to go away?
I was in attack when treatment started, but it wasn't a debilitating full on attack, my ms symptoms were more or less absent when I started treatment. It is more the time frame for the side effects to shift I am after thoughts on.

Re: Infusion related side effects/allergic reactions.

Posted: Tue Nov 04, 2014 5:46 am
by Mieke127

I received my first dose in 2011. Each time was different.
The first time(2011), was really bad for me and it lasted 10 days.
The second time(2012) was not that bad, just extreme nausea.
The third time(2013) was really bad. I had to be hospitalized for a week.

What I am saying is, each experience differs. But all I can say is I haven't had ANY MS symptoms in over a year so stay strong :)
In the end it is worth all the pain.

Re: Infusion related side effects/allergic reactions.

Posted: Sun Nov 09, 2014 11:53 pm
by sofia
It turned out to be an attack, with two new leasions. I understand that the stress of lemtrada treatment can set off MS relapses, and that it is not that uncommon. Neuro said that it did not mean that the treatment was unsuccessful, as the lemtrada takes time to work, it does not kill off the white bloodcells straight away.

The treatment has been very rough, its been hard work, hard on the body, hard on the mind.

Well it is irreversible, i can never get it back out of my body. All I can do is to sit back and wait go iin for my second treatment in about a year, just wait for long term remission. The long term remission we are all hoping for :-)

Why did you need a third infusion? Where I live, and in most of Europe it seems to be standard procedure with just two treatments, a third one is only done if there is new leasions on MRI, but I am not sure about this. Bur they did say most patients do not need third treatment.

But must say it has been an ordeal, its been rough so far. The fact that I needed cortison to treat the attack three days after finishing lemtrada treatment, where they had all ready given med lots of steroids to treat the lemtrada side effects probably made it harder on the body. a course of steroids in its self is quite a treatment. I had 7 infusions of that in two weeks.
Things are looking up though, it is all easing a bit off.

It is good to hear that you have been MS symptom free, and that you are in long term remission, that is the most important thing. I like to hear all about positive stories.

Re: Infusion related side effects/allergic reactions.

Posted: Wed Feb 08, 2017 1:03 am
by BavarianStef
Hi sofia,

I finished my first lemtrada cycle on february 4 and just discovered your post. How is your ms now doing, 3 years later? Have the side effects and infusion risks it been worth?

I'm feeling better just the other day after last infusion, and i hope this will improve even further. I only have problems with very bad headache, maybe a histamin problem.