Risk-benefit information, all DMTs
Hi everyone!
I am a researcher working in the MS community and am just about to embark on a new project looking at how information is presented to people with MS, particularly risk and benefit information of DMTs.
I am hoping to receive any feedback from people that have ever been on any MS treatments and medications, mainly so I can make sure that my study will focus on what is important to people with MS. So any comments you may have about any of the below questions will be really very helpful!
How important is it for you to have full risk-benefit information about MS medications that you are currently taking or know of?
How effective, in your opinion, is the risk-benefit information you currently receive from your physicians and other sources?
Are you happy with the presentation of risk-benefit information you have received recently or would you like this information to be presented in a different way, for example more detail, less technical stuff etc. ?
Please don't feel you have to answer all of the above questions if you would like to give feedback - just any comments you may have about these points will really help me target my study better and hopefully help people in the MS community!
Thank you for reading my post!
Gurpreet
Hi Gurpeet I am due to start Avonex next week, for first time as have been recently diagnosed. I feel things have been explained, but as to how much I have taken in, due to being upset is another matter. I can't help but have the niggling doubt in the back of my mind about drugs and how much money they make from them and I am still a bit confused as to how these drugs work as to will I feel benefit from them, do they really try to stop further relapses, how come some are so dangerous, and how can they say that its better to be diagnosed in this day and age and there are treatments and then i hear of someone who can only have another year on the drug they are on because of far of brain disease... The Avonex booklet is very 'positive', but its the total opposite of how I am feeling right now. Delete this if it's not what you are looking for. :0)
Most people are told to go to the MS decisions website after seeing the DMD specialist who explained everything. I was given lots of info and help. I was very impressed with the service from the nhs and I feel very supported.