In Regards to the Person Who Died During the Trial

There is some worry and speculation about the drug and its side effects because someone in the trial did die. It is not as worrisome to others as it may sound.


The person in question lived in a foreign country where rules and regulations for drugs may be different.


We are under strict orders to not take any steroids without permission. For those not aware of the treatments for MS, steroids is given to patients at the beginning of a relapse to try to help prevent it from getting worse. It only works in the very early stages if it works at all.


You have to notify the study that you are having symptoms, go into them and be seen, and if they think you are indeed having a relapse then they will administer the steroids to you personally. This is for the sake of the study and to insure your health.


This person in particular got adult chicken pox, which in itself, is a very dangerous thing. Especially to someone who's immune system is already compromised. Thats what the drug does. That is what all MS treatments do. They take your immune system down so it will hopefully quit attacking itself.


This person took drugs at the study and apparently was taking other drugs that she had obtained somewhere else. This I do believe is the true nature of the problem. I do not think it was the drug alone.


I was notified by phone immediately and my trial nurse was very sure I understood what was going on before she got off the phone. Then there was a new line of paper work to include that people who have not had chicken pox will no longer be admitted to the trial. I had it as a child and a good case of it, so Im good either way.


Incidentally there apparently is now a clause in there about herpes because of someone getting treatment that contradicted the study in some way. I really didnt need details on that one.


That is the thing about studies. If something happens to 1 person, then that incident now becomes a potential side effect everyone else has to be checked for. So just cause they list a side effect, doesn't mean it happens a lot. It could have been just 1 person. They can't rule it out cause it happened why they are on the study.


You do have the option to opt out at any time. You are not in it for life. If you get really bad and need serious treatment, they will treat you and take you off the study.


I still like my odds with the pill and it's not a needle.