Quote:
Originally Posted by barb02
I posted on "that other site" that lately I have been feeling envious of those who experience success with tysabri or other DMD's. It is not that I do not hope that others will continue to do well on these treatments (I do), but I have just been wondering why some of us seem to be so allergic to (or experience problems with) all of these treatments. I have discovered that there are others who feel the same way, and that we all feel guilty for these feelings. So now I am trying to accept these feelings and move on. I think that posting about them has actually helped me. Is that weird? Plus the sun is shining today!  |
Hi Barb,
I'm sorry you have been having problems with the DMD's and are feeling frustrated. I know how you feel. I'm not having allergic reactions but my body just does not like these meds. I couldn't tolerate interferons. Even on the lowest dose of Rebif I was sick in bed straight 24/7 plus got seriously depressed. I was put on copaxone and told it's the drug that everyone can tolerate well--just some injection site reactions. Well, the C. has made me incredibly and unbearably nauseous such that I had to be given powerful anti-nausea meds that they typically give to chemo patients! And I still feel sick. Oh, and the C. gives me the jitters (anxiety) and flu-like muscle aches. I am almost at week 7 and will probably have to give it up because it is getting unbearable. I feel like such a failure, as if my body is letting me down. And I look at other people and say "wow, I can't believe people can tolerate DMD's with no side effects." Why can't I be like that? So I am entering the "now what?" stage too.
You shouldn't feel guilty for being a little envious. All of us have different body chemistries and if these drugs were perfect products they would come with no side effect profiles and would work 100%. So blame the drug companies! I know there is something out there that can help you! I'm hopeful for you. It's just a matter of finding it with some trial and error. There are also some new drugs on the horizon that are close to coming out which I'm sure you've heard many people tell you about. I have created a folder in my "favorites" section on the browser that is called "Read When Depressed About MS." It has links to websites that keep updates on all the new drugs and close to ending clinical trials going on. I pull these up when I need to feel hopeful.
So hang in there! Don't beat yourself up too much for feeling envious or getting frustrated.
warm regards,
Natalie