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Natalizumab Trial

Posted by Nick , 12 December 2014 · 647 views

It's hard to believe that I am now coming to the end of my two year 'Ascend' trial looking into using the drug Natalizumab in Secondary Progressive MS. This has been what is termed a 'double blind', Placebo controlled study which simply means nobody has a clue as to if I am on the real drug or not!   Anyone who is offered a trial such as this one should think seriously about it.  On the plus side there has been the benefits of regular contact with some very knowledgeable people, regular examination and simply the interest of being involved. These are all positive things, and in that respect are all things that help with living life with MS.
Now of course the real question might be, 'Do I feel any different',  Well to be honest I don't really know!  This might sound a bit of a blow, however I can't say that I have seen much progression of my condition. This of course is precisely what the drug is intended to do. This brings us again to the question, 'Am I on the real drug',  and of course the answer is, I don't know and won't know for some considerable time.  
All drugs carry risk and this one is no exception. The most serious is the risk of 'Progressive multifocal leukoencephalopathy' (PML)  which is a rare brain infection. The risk of PML is known to be very small, yet the risk is increased dependent on a common virus, known as the JC virus.  This condition can change in a person and at present, from my last blood tests I am currently JC Positive.
Risk is something I understand,  We all take 'risks' many of which we do automatically, very swiftly assessing our chances in life.  You could say that risk taking is a way of life and the way that we progress.   In this way I have, so far been more than happy to chance the very low probability that the serious implications of PML will not affect me, for the return that I may, or may not be taking a drug that slows down my MS.  Definitely worth it!
This is not the end of the matter. This trial is coming to an end but participants have now been offered a continuation, a new trial, known as the 'Open Label extension'  This means the real drug will be offered to people for an indefinite period.  The task for myself, and others on the trial,  is to now re-assess risk, something that is far more difficult to undertake. The problem is that prolonged use of Natalizumab carries an increased risk, yet I won't know (at this point) if I have in fact been taking it rather than a placebo for the past two years.  Looking at it objectivly one has to assume that I have been on the real thing for two years and that I am JC Positive.  This changes the level of risk from say 1000:1 to 100:1. That is an increase by a factor of 10, yet looking at it another way it means there is still only a 1% chance that I might experience the very serious consequences of PML.   I shall be thinking about my decision over the next month and will let you know how I get on.



Best of luck with your decision Nick, not an easy one to make for sure. Lots of respect to you for going on the trial, that in itself is a brave thing to do, and hopefully will it will lead to some positive results.
Thanks Lala,
I will keep you all posted.
Good blog, Nick. You'll make the right decision for you.

:moonieman:
That's right John, I will !
Hello Nick,

I can't quite believe that it's been two years since you started this trial. I can understand how you 'don't know' if you feel any different too.

It's a hard decision for you to make, but, I'm sure that you and Kay will weigh up all the possibilities and come to the right decision.

It would be much easier for you I guess, to make that decision if you were made aware of whether you were taking the drug or not , given the risk associated with continued use!

The very best if luck to you, and will definitely 'watch this space'
Scully
x
Hi Nick
I dont post very often but I do read with great intrest
like you I am on this trial i have taken up the second part of the trial i am just going into week 116 next week
like your post i can relate almost to the letter I am also JC Posative

Mark
Good to hear from you,   I'm still considering things and will post my thoughts and the conclusion I come to soon.  

Nick

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