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tracyd
2 years ago

@gates1989
My story is one that’s complete, up to date and real time. I’m now nearly 7 months post round 2 and yes for me Lemtrada has been a raging sucess.

The free version is here : http://www.tracyslemtradajourney.co.uk

Year 1 of the blog is also available on Amazon as an easy to read eBook with all the spelling and gramatical stuff mostly corrected for £1.99 with all proceeds coming directly here to SHIFTMS as it’s a registered charity.

https://www.amazon.co.uk/dp/B01GE1V00M


gates1989
2 years ago

@tracyd thank you so much for posting! I’m really nervous but hoping it will be a success for me too! Congratulations I’m really pleased for you! Xx


pv04
2 years ago

For me Lemtrada is like insurance. Been through both rounds and no relapses. Having said that I was relapse free for almost a year before taking it. No idea if it is working, but see it as a way of tilting the scales in my favour. In terms of side effects, my view is better the devil you know


gates1989
2 years ago

That’s amazing @pv04! What side affects did you get?


pv04
2 years ago

@gates1989

None so far other than a couple of bouts of illness which I put down to dumbed down immune system:
– upset stomach which lasted about 3 days. I ate something I shouldn’t have
– bad sore throat, tingling ears and conjunctivitis which lasted about a week end to end. Think my toddler niece gave that to me

Am now about 6 weeks post round 2 and not picked anything up yet. Fully expect to though.

Am aware of 1 in 3 chance of thyroid problems but monthly bloods will catch problem early and I can get some help with that too.


gates1989
2 years ago

@pv04 yes I think given your immune system you’d have to expect to catch some viral illnesses! Have you noticed any improvement at all though two years later? It’s amazing in itself that you’ve been relapse free for over 2 years though!


pv04
2 years ago

@gates1989

No improvement as such as was relapse free for about a year prior to round 1. And been relapse free since. Hoping it has made the difference though. Looking forward to my next MRI in Dec to see if it has had any impact


gates1989
2 years ago

Relapse free is a good place to start! Yea I can understand how it’s difficult for you to tell if you were already relapse free, well I hope December is all good news for you!


bienenstich
2 years ago

Hey gates1989
Where is your treatment going to be? Am due at Queens Square, also on 13 Feb…


gates1989
2 years ago

Hi @bienenstich I’m at the royal London in Whitechapel


bienenstich
2 years ago

Not far from each other then, good luck with it! Sent you a friend request (would be interested to see how we all get on with the Lem…)


gates1989
2 years ago

Yes absolutely we can compare notes lol!


bethpen
2 years ago

Ah I’m in just before you guys! I start at the Royal London 23 Jan. I just moved my case over there after having some trouble with a consultant at another hospital. Bit nervous now it’s so close! How you guys feeling about it?

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