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mj2000uk

Fingolimod trial

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mj2000uk

Hi All

 

I returned from the Walton Centre in Liverpool last week and my consultant tells me that I am being put forward to take part in the trial for Fingolimod.

 

I knew nothing of this drug but was very happy to be told its the first oral treatment designed for MS!!

 

Thats all I know right now, I should hear some news at the end of July and then there will be a series of tests on my heart, blood and lungs as side affects hit those areas. If all goes well I should be on it for 2 years.

 

I dont know what to say other than any trial of any drug, I had made the decision to give an instant YES because we wont find a cure unless we all pitch in. So wish me luck and see my fear once it gets closer!!!

 

Mike

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brainless

Hi Mike

 

 

very best of luck, I wish youwell.

 

Can I ask your history, type of MS, etc.?


Lottie, x

 

LIVING IN THE MOMENT

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happyandy

Hi Mike,

 

I thought the trials have taken place and it was to be on release to the NHS in 2011 ?

 

I was meant to go on a trial for that a year or so back (Tower study I think) but it was a placebo trial and didn't fancy sugar pills

 

Andy


If I knew I was going to live so long I would have taken better care of my body

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Hezza

Hi Mike,

Hope it goes well for you. I know that my local MS Nurses are hopeful about the introduction of fingolimod.

 

The MS Trust do have a factsheet with a little more information on it: MS Trust Fingolimod Factsheet


Life is short. Eat dessert first. Jacques Torres

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Christina

Good luck with the trial, let us know how it goes.

 

I was reading that fingolimod comes from a fungus grown inside an insect but I might have got that bit wrong!

 

Chris x :hearts_circle:


Not waiting for the storm to pass, but learning to dance in the rain ....

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Tania B

Good luck with the trial Mike.

 

As Andy wrote, I thought that Fingolamid was likely to be available on the NHS in 2011 as well. Now where did I read that? As for a fungus grown inside an insect, I'd not read that. Weird!

 

Do let us know more!

 

Tania

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happyandy

What is worse is the family of drugs such as CAMPATH and TYSABRI belong to

 

They are developed in mice and more recently in rabbits for some then they have the DNA altered with human DNA and that's why they are called the humanised or chimeric monoclonal antibody drugs. Its one of the reasons the side effects can be a bit severe.

 

Mind you everything is a big gruesome when you really think about it.

 

Next time you see beef in M & S and you see that its been "matured" for 28 days .........

 

Andy


If I knew I was going to live so long I would have taken better care of my body

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Dianni

Hi Mike :clapjump:

 

I hope the trial is a success for you!

 

 

 

It might (well probably is) just me and the way my brain is working at the moment, but does anyone else think the name of this med is more akin to a children's TV programme title?

 

Every time I read the name I think of oversized, multi-coloured characters dancing around a tree with bells! :clapjump:

 

Hugs

Di

xxx

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Christina

I know exactly what you mean Di - perhaps that's what it does to you - turns you into multi-coloured, oversized character!! :clapjump:

 

Chris x :clapjump:


Not waiting for the storm to pass, but learning to dance in the rain ....

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mj2000uk

Hi guys

 

Just to let you know, I have been on the fingolimod drug for just over a month now. I have been taking the 0.5mg dose of the drug once a day without any side affects.

 

What is it doing for me? I have no idea. I have been signed up to be on the drug for a year and it is meant the extend the gap between relapses. However, I havent had a relapse for a year so I dont really know how they can judge if its successful onme!!!

 

Still, being on something is better than being on nothing and we all have the obligation to be a lab rat while there is no cure.

 

The drug has been approved everywhere but here and it still has not been approved by NICE. The reason for my trial, along with the others I am on it with, is to see what happens when it becomes available "en mass"! So the fact I am not having relapses right now doesnt matter to them, they just want to see what happens when lots of people out there are on it!!!

 

I have been told that my trial may get extended to 3 years and I have also been told I am on the genuine drug and there are no placebos in this trial.

 

So heres looking forward to a relapse free year if possible!!!

 

Mike

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Christina

I look forward to the drug becoming more widely available Mike. I shall certainly be asking my neuro if I can try it. Glad to hear you're not having any side effects so far.

 

Chris x :hearts_circle:


Not waiting for the storm to pass, but learning to dance in the rain ....

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Akorah

Hi all as i have said before i am on my nueros short list for this drug next year. Im hoping all the trials for it go ok and it does work for us if i was asked to be a lab rat for it i would. Anythings worth a try in my opinion! :hearts_circle:


chelly xxx

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Susan

Hi,

 

I have been offered a place to take part in a "study" for this drug. I am really keen to do it, but not sure if I will be allowed as I have a 2 week holiday booked in April to Tenerife. Surely when taking part in such studies you cannot be expected to stay at home?

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mj2000uk

Hi All

 

Just an update on Fingolimod for you.

 

I have now been on the drug since June 2010 and I will remain on the drug until December 2012.

 

I havent had any relapses in this time, I havent experienced any repair in my condition but then I havent experienced any progression either.

 

So all in all, I think it is being successful for me. However, NICE have not approved the drug for the NHS because of its cost so it looks as though I will be back to being on nothing from December 2012.

 

The clinical trials unit of hospital have said though that there is an ethical case to keep meon Fingolimod after the trial is over and there is a chance that Novartis will continue to supply to those who have had successful trials.

 

This has been the easiest drug in the world to use. Just 1 tablet, once a day and attending the hospital every 3 months for blood tests etc. I am really pleased with it.

 

Mike

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Scully

Hello Mike,

 

I am really pleased to hear that your trial has gone well and you've experienced no side effects either, good news indeed!

 

Also encouraging that you've had no replapses since taking it. I really hope that it can be extended for you and for others of course.

 

Scully


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Christina

This is great news Mike, but also bad news that NICE aren't likely to fund it. As a person who would be eligible to try it, I'm really disappointed that it's not felt to be cost effective.

 

I hope for your sake, the drug company will continue to keep you on it. After all if it wasn't for those like you who are willing to be part of a drug trial, they wouldn't be able to market their drugs.

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

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Hezza

Hi Mike,

Thanks for sharing your update with us. It's great to hear that you've been doing well on the treatment. Disappointing, as Chris has already said, that it may not gain NICE approval, I hope they do find a solution for you.

 

:heartraining:


Life is short. Eat dessert first. Jacques Torres

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mj2000uk

Thanks everyone.

 

I will tell you the weirdest thing though, and this is a hard one to quantify!!

 

In the last 2 years, I have lost a fair amount of weight after finally waking up when my doctor said to me "the best thing you can do is lose some weight and give your body something else to do other than avoiding diabetes and a heart attack".

 

So the Fingolimod trial coincides with loss of weight. So is the fact that I have lost weight been the reason for no further relapses or has it been Fingolimod or a misture of the 2!!!

 

The right answer is always going to be a mix of the 2 I am sure!!!

 

Mike

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