befuddled 23/01/17
Last reply 1 year ago
Lemtrada- Eligibilty

Hi all! I hope this year has treated you all better.
I have a slight problem- But I wanted your collective opinion.
I am Australian and currently living in Austria. I am currently on Gilenya for RRMS and I am stable however my fatigue is awful and I am constantly plagued with colds and flus #immunosuppressed. This makes my career choices rather difficult as I am training to be an opera singer- which is hard without being able to ever breathe through my face.

My current symptoms are balance issues and pain in my left side. Vision and memory problems, and of course pure exhaustion.
My neurologist in Australia (who knows me on a more personal level) has suggested and would prefer that I leave Gilenya and change to Lemtrada. It is fully covered by my insurances in Australia.
However, my neurologist in Austria is against it since the indication of highly active MS is for sure not fulfilled in my case. (He doesnt support the decision but will continue to treat me regardless)
That being said, I know for lemtrada to be an option in Austria you have to have highly active ms, and have failed some treatments previously.

I am leaning towards the lemtrada treatment as it feels like I am being given a chance to try get back to a near to normal life. (totally aware of the side effects) Im only 26 and moved to Europe to sing, not be bed ridden by life. I’m eligible in Australia but not in Austria.
So, what would you do??

How ever I feel like this is a case of an eligibilty/fairness/moral conundrum.
Any thoughts would be appreciated.
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adamframpton
1 year ago

Hi
I live in England and I am in the process of being put forward for Lemtrada. Due to the expense involved there are a few hoops to jump through to make sure I am eligible.
I honestly believe that a lot of the treatment available to you is purely down to the specialist, what their feelings are on a specific medication and how much they will push for things for you.
I transferred specialists about 2 years ago as I found under my previous specialist was very much wait and see and wasn’t very progressive with either the advice or treatment on offer.

If it is something that you feel very strongly about, then do all that you can to push for the Lemtrada . Its your health at the end of the day.


cee79
1 year ago

I was diagnosised with RRMS in December 2013- who knows how long before that I may have developed it and had been suffering with symptoms. My neurologist last year in October suggested I should move to lemtrada treatment or stem cell, -as 8 months on tysabri infusion didn’t appear to have done much for me, as it was evident my symptoms were progressing; falls, trips, weakness in left side moreso, head aches and eye aches, feeling of intoxication, worsening balance etc…… and the latest MRI showed an active lesion. I guess this is what lead to the diagnosis changing (through no discussion in my appointment) to highly active MS and the suggestion of the meds change, and also the fact that I tested positive for the JC virus at high level at the start of my tysabri treatment, and there is a risk of developing PML (Progressive multifocal leukoencephalopathy ) as the measurements of the JC virus were high.
As you may or may not experience, when going for your neuro appointments, the brain does not ‘fire in all cylinders’ and a lot of questions come to your mind after. So I can only presume now, that due to an increase of my falls (in one of which I broke a bone in my foot and tore a ligament in my ankle!) and other symptoms, and the activity of a leision, the neurologist has bumped up my diagnosis and put me forward for lemtrada and am due to start at the end of Feb.
Big wow by the way of becoming an opera singer, mucho respect!!??
I was treated on gylenia for 1.5 year and it didn’t do much for me other that I didn’t have to inject my self every week any more.
Your 26, a youngster in my eyes and have the rest of you life ahead of you, am 37- going on 70 it feels like. Give your self the best chance in life x
Take care and do what feels best for you!

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