clinical trials?

[lala]

Hi everyone-I hope you are all doing ok?

 

Seeing the Neuro soon and was thinking of enquiring about enrolling on a clinical trial of some kind. Just wondered if anyone has any experiences of these trials? And if so how does it impact on your daily life? Interested to hear all thoughts on this, thanks.

Laura x

[Mal]

I applied for one for people with SPMS but not heard anything yet ,

i guess it would be ok if you know your receiving the drug they are testing ,

but if there is a placebo involved , i would spend most of my time thinking i was taking it lol

 

Mal x

[Nick]

I'm on a Tysabri trail for SPMS and can only talk of my own experiences so far. The first thing about all this is that everything is explained to you clearly, giving you the ability to understand any risks involved and assess wether you want to proceed. In the trail I am taking part in there was also a lot of assessment with regard to suitability for the specific aims of that trail and as I understand it this means that some volunteers may be disappointed when they don't get on the trail. I suppose that might sound a bit odd and in my case it was my neurologist who asked me if I would like to be on the trail. When I was first diagnosed I did put myself forward for any involvement in anything like that and had already done a few 'model patients' and voluntary assistance in GP training.

Mal, the placebo thing is rather strange. The trail I am on is a 'double blind' 50% Placebo set up over two years and YES it is difficult, I started out taking the stance that I would think of myself as being on the placebo, but it does always cross my mind that I am on the real thing!

The biggest advantage is that despite the fact I may be on the placebo is that you get a lot more medical attention than you would otherwise. Part of the trail involves regular MRI scans and also regular neurological examination and assessment. This means that at least I know precisely how well I am doing and also gives me a chance to talk to some very knowable people.

In my case the effort involved is one trip a month to Hospital during which I have the drug infusion lasting about an hour along with various examinations and tests which lasts in total about half a day.

Very often with these things the trail may well go on to a later stage 'Open book' where you can continue with the real drug if that is appropriate.

At all times you can leave the trail, there is no obligation to continue should you feel that you what to.

As far as i am concerned I feel privileged that I was able to help and being involved is Brilliant!!

 

Nick

[lala]

Thanks to you both.

Your experience of the trial Nick sounds really positive, hope it is doing you some good. How long are you on the trial for?

Hadn't thought about the placebo aspect of things. I would just like to do something useful with my time to help and i'm not able to run marathons and my home baking is abysmal!

Will mention it to the neurologist and see what his thought's are...not sure i will be allowed on any as i have already had beta-interferons.

Hope you hear something soon Mal.

 

Laura x

[Nick]

Laura,

 

I'm around 8 Months into a two year trail, involved in seeing into the effectiveness of Tysabri with regard to mobility in people with SPMS. This is a 'phase 3' trail which means it's a long way down the road with a drug that is already in use with RRMS. I also 'put my hand up' with my local GP's surgery that is involved in teaching up and coming medical students and occasionally get asked to either talk about my MS or to act as a diagnostic tool!! That's fun and also great that you get to pass on to future GP's the way MS is for the patient. In other words you can get push the cause for better understanding of some of the finer points of your problems, which I am sure is of great assistance to us all. You have to be proactive in all this and push yourself forward a bit.

Nick

[Rama]

Hi Laura,

 

I have also applied to a trial for SPMS - think it is the one Mal has applied for as well. I know they are behind schedule in this trial so I don't expect to hear anything from them till the new year.

 

You'll probably find that if it is a trial that involves taking a new drug then you can't be on any of the disease modifying drugs. There are other trials that you can get involved with though. I am taking part in a study into ISC in MS patients. All this involves is completing a questionnaire every couple of months and having a chat with one of the people running the study every couple of months as well.

 

There are a few websites where you can search for clinical trials in your area.

 

For example the NHS has a website

 

http://www.nhs.uk/Conditions/Clinical-trials/Pages/clinical-trial-details.aspx?TrialId=NCT01977287&Condition=multiple%20Sclerosis&pn=1&Rec=0&CT=0

 

This link should take you to their web page.

 

Maybe you'll find something there that takes your fancy.

 

Gill x

[lala]

Thanks for the link Gill! Not taking any dmd at the moment so fingers crossed! Good luck with your trial, when it starts.

Laura x

[lala]

So went to my specialist appointment, first time meeting him, had been very apprehensive. He was brilliant, in a completely different league to the neuro's I'd seen before. Went on a good long tirade too about the BS which surround ms drug treatment eligibility. Felt nice to know it's not just us the patients that find it backwards!

Anyway we discussed dmd's, I don't fully meet criteria for oral treatment, and I don't really want to take an injection, so he suggested a clinical trial for an oral DMD v interferon. So I jumped on board and he is going to put me at the front of the queue! It will be 3 months waiting or so, but just feeling very happy!

Hope you guys get somewhere with your trials soon, let me know as il be very interested to know the procedures. Also got a chance to see the bladder nurse and am being referred for a scan. So all in all went very well, what a difference a decent doctor can make!

Laura x

Edited 29 Nov 2013, 9:43 am by lala

[Tania B]

It would be good if the cause of MS was known first.

[Nick]

Good news Laura!

I'm sure you will get lots of attention on the trail and it's also a good way to learn more about your own MS.

 

Nick

[lala]

Thanks Nick, feels good to be moving forward again!

Lx

[Hezza]

Glad you had a good appointment. Do let us know how things progress with the trial - other's experiences are invaluable.

 

[Rama]

That all sounds very positive Laura. Good luck with the trial. I'll be very interested to hear about your experiences of the trial once it starts.

 

Gill x