I was dx last week () with RRMS and my consultant said he thinks dmd treatment would be good for me, and asked if I would consider a trial. I have all the paperwork to read through but quite frankly, I am scared about the injecting enough and everytime I start to read it I feel sick as a pig.
Anyway, i just wondered if anyone else is doing/has been on a trial and what their experiences were.
The trial I am offered is to test the ‘efficacy and safety of GTR in Comparison to Copaxone’ - basically the same drug but a different ‘brand’.
I was on a drug trial for Fingolimod for two years.This oral tablet is now called Gilenya and is licensed and I have been prescribed it.I accepted to do the trial in 2007 because otherwise they weren’t going to offer me anything else.It was a two in three chance of taking the drug and not the placebo,as the drug had 2 differing doses.Turns out that I was taking the drug and not the placebo.You seem to be saying that you will get one drug or the other.Is there no placebo involved?Have they not offered you anything else but this?If there’s no placebo involved then that’s great as at least you know you’re getting a drug.
I would have a chat with my neuro to ask what benefits there were to me in doing the trial.
Hope this is of some use to you.You do get a very good follow up if you’re on a drug trial.
Take care,Brenda x
Thanks brenda, - yes it does include a placebo and is a ‘double blind’ trial. I am just interested as to how people coped with the ‘reporting’ requirements of a trial as it seems to be loads lol. I do think it would be a great thing to think that I would be potentially be helping people in the future, but would I be selfish to refuse it and go with the tried and tested? Decisions Decisions…
Dear Amanda There is absolutely nothing selfish in refusing to go into a trial. Yes it’s lovely to think we may be helping the next generation but quite frankly it’s the here and now that’s important. So go with your gut instinct and do what is right for you Lesley
You must do what you feel is right for you.If you get the choice to have a standard dmd instead of joining the trial and risk being given the placebo,then I would go for the dmd.It’s not selfish to choose not to go on the trial.
Good luck,Brenda x
Trials are the lifeblood of new meds, but I’d be selfish if I were you: what is the best option for me?
Can I have a DMD even if I turn down the trial? If I can, then I’d say no to the trial. That chance of getting a placebo means its not worth it for me.
If the trial is my only way to (maybe) getting a DMD, then I’d say yes. Some chance is better than no chance.
Whichever route you take, please don’t worry about injecting - it is surprisingly easy and soon becomes part of daily routine, just like brushing your teeth!
u just made me laugh cos that is one of things i have been unable to do recently-brush my own teeth! i coped with being washed even in intimate bits-i knew it was just part of their job-i was a staff nurse myself for 10 years but someone else brushing my teeth-yuk!
I chose to go on drug trial because without the trial there was nothing else on offer. I am not sure if the alternative had been an existing treatment I would have gone on the trial.
I had to come off the trial becuase of side effects and the results of the trial were that the drug did not have any effect. It was a gamble, which in my case I thought was worth taking.
Good Luck with whatever you decide to do.
When I was first diagonsed the neurologist had a nurse sit in on the diagnosis and then phone me a week later to talk about trials.
When I was first diagnosed I was keen to be “useful” and wanted to undergo all the trials I could. Then I started thinking about my partner having to take time off work every month to take me on these trials, losing money there. I considered the petrol involved in driving backwards and forwards to the hospital all the time (I was already doing it for physio), losing money there too.
Then I looked at how I was physicaly, since the steroids had kicked me back into a condition which was laughably the best i had felt in two years. I started thinking about how I might react to side effects on an untested drug, or worse another relapse from taking a placebo.
At that point, I thought, no actually what’s really important is being in a condition to enjoy the life I still have. The unknown and expense of a drug trial when I could be getting nothing and even if I get something useful, at some point they will take it away anyway, left me cold to the idea.
Perhaps wrongly, I was also quite dissapointed the drug company didn’t offer to pay it’s volunteers to be honest. They offered me free parking, but the travel expense and disruption to mine and my partners life, plus the loss of her days wages at work deserved compensation from the multi billion dollar company that wanted my “help” to make more money.
Don’t let anyone guilt trip you into thinking your own health and comfort are a lesser priority.
I also experience a clinical trial for diabetes and it is really nice to be a part of discovering new treatment and medicine and the doctors still prioritize your health if you undergo with this test and in doesn’t risk your health.