Hello all,
Just found this site and seeing as it looks like a good place for info from level headed people I thought I´d join in.
After 24 years in the UK in the RAF I left to live in New Zealand for a life style change; 18 months after our arrival I was diagnosed with MS, not the life style change I was looking for but we´re still here and smiling.
Looking forward to reading all your wise words and advice and hopefully I can add a few of my own.
I suppose I´m not too bad at the moment with only manageable mobility problems with 1 leg and a bit of tiredness and I´m hoping to at least keep it at that. I´ve just started a trail taking firategrast and would be interested is anybody else was doing the same.
Warmest regards and good luck to all
Hello, Kia Ora and Hola
Thanks for the welcome guys.
Loobie, I´m not sure what Firategrast is but its supposed to work in a similar way to Tysabri. The difference is is that its an oral medication. Its a double blind study so we don´t know how much if any medication I am taking, all I know that is that I take 4 tablets every 12 hours.
Positive thing is that I have had no side effects and I feel better in myself, a bit more energy and confidence in doing things. Whether thats the treatment or just one of those things I don´t know, lets see how things are in a few weeks.
Just discovered that it is better known as 683699, they don´t make numbers like that anymore
Loobie, I´m not sure what Firategrast is but its supposed to work in a similar way to Tysabri. The difference is is that its an oral medication. Its a double blind study so we don´t know how much if any medication I am taking, all I know that is that I take 4 tablets every 12 hours.
Positive thing is that I have had no side effects and I feel better in myself, a bit more energy and confidence in doing things. Whether thats the treatment or just one of those things I don´t know, lets see how things are in a few weeks.
Just discovered that it is better known as 683699, they don´t make numbers like that anymore
Firategrast Trials
I am also a New Zealand MS sufferer and have just been given the option of participating in the trial of Firategrast in Christchurch. Feeling a bit overwhelmed by all the jargon etc and found your post on this forum. How is it working out for you at the moment? It would be really great to hear your experiences before I start on the trial. I've just been told by my neuro that my Avonex funding won't be renewed due to a relapse this month so I have the choice between trialling this or BG00012 and it's quite a difficult decision to make. I hope it's all working out for you and thanks for being brave and doing the trial.
Firategrast Trials
Hi Lisa,
I never know whether to say nice to meet you or sorry to meet you on a site like this, but I prefer the positive, so Hi nice to meet you.
I´ve been on the trial for 12 weeks now and I´ve posted some other stuff regarding it here
http://www.thisisms.com/ftopict-4121.html
Your right there is a load of jargon and big non-English words in all the trial literature, on that other link that I posted there is another link that explains what the drug does in a more understnadable form.
Regarding the trial. It started with a series of medicals and tests to see if I qualified, blood tests, ECG, MRI, walking, pegs in holes and the maths test
.
The blood tests I understand are a check for something called the JC virus which can cause PML.
Following the tests and confirmation of eligability I had to do them all again on day 1 of the trial and then was given the first 4 week supply of tablets. I get 4 bottles and have to take 1 from each twice a day. Beyond that and keeping a very rudimentary diary the only constraint is a limit of how much fruit juice a day I can have.
Every 4 weeks there is another medical with more blood tests, ECG and MRI but no more maths
....until the end 
I will be on the tablets for 24 weeks in total and then there are further periodic medicals and tests to see what happens when I come off them.
Results wise...I´m lucky in that I have only mild MS but I have noticed less fatigue and improvements in the strength of my affected leg/foot. The neurologists now reckons its as strong as the other one.
I´ve had no side effects except the odd headache when I started taking them but that may not even have been related.
All in all I feel quite positive about how things are going and the doctor shares that optimisim based on results he is seeing/hearing about elsewhere.
Like you I was struggling to make a decision but in the end I just adopted my usual philosophy to lfe...."You always regret the things you didn´t do more than those that you did."
Hope my little informations helps in some way and very good luck with whatever you decide to do.
I never know whether to say nice to meet you or sorry to meet you on a site like this, but I prefer the positive, so Hi nice to meet you.
I´ve been on the trial for 12 weeks now and I´ve posted some other stuff regarding it here
http://www.thisisms.com/ftopict-4121.html
Your right there is a load of jargon and big non-English words in all the trial literature, on that other link that I posted there is another link that explains what the drug does in a more understnadable form.
Regarding the trial. It started with a series of medicals and tests to see if I qualified, blood tests, ECG, MRI, walking, pegs in holes and the maths test
.The blood tests I understand are a check for something called the JC virus which can cause PML.
Following the tests and confirmation of eligability I had to do them all again on day 1 of the trial and then was given the first 4 week supply of tablets. I get 4 bottles and have to take 1 from each twice a day. Beyond that and keeping a very rudimentary diary the only constraint is a limit of how much fruit juice a day I can have.
Every 4 weeks there is another medical with more blood tests, ECG and MRI but no more maths
....until the end I will be on the tablets for 24 weeks in total and then there are further periodic medicals and tests to see what happens when I come off them.
Results wise...I´m lucky in that I have only mild MS but I have noticed less fatigue and improvements in the strength of my affected leg/foot. The neurologists now reckons its as strong as the other one.
I´ve had no side effects except the odd headache when I started taking them but that may not even have been related.
All in all I feel quite positive about how things are going and the doctor shares that optimisim based on results he is seeing/hearing about elsewhere.
Like you I was struggling to make a decision but in the end I just adopted my usual philosophy to lfe...."You always regret the things you didn´t do more than those that you did."
Hope my little informations helps in some way and very good luck with whatever you decide to do.
-
REDHAIRANDTEMPER
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Lisa, this from Dr Mark Freedman http://www.medscape.com/viewarticle/546714
Dr Mark Freedman wrote:One other oral therapy that was curious is the novel agent called oral fumarate, deemed BG00012 by the company developing it. This agent evolves from the psoriasis world where it has been tested for some time.
Kappos and colleagues[14] did a standard 24-week study in patients who had early disease; they had to have at least 1 attack in the last year, and at least 1 or more enhancing lesions. They tested placebo and 3 different drug levels: 120 mg once a day, 120 mg 3 times a day, or 240 mg 3 times a day. Then, all patients received BG00012 during a 24-week dose-blinded safety-extension period. Patients had a 69% reduction in the total number of gadolinium-enhancing lesions at weeks 12-24 and a reduction in the number of new and enlarging T2-hyperintense and T1-hypointense lesions. The largest effect was seen with the 240-mg 3 times a day dose. It appears that these results are encouraging enough to proceed into phase 3 testing.
Therefore, BG00012, teriflunomide, fingolimod, and cladribine are now in phase 3 trials. This means that we now have 4 oral therapies in phase 3 trials, so potentially by the end of this first decade of the millennium, we may have a number of oral therapies for MS, if they all prove to be successful.