Hi Amy, I'm so sorry to hear the news about Copaxone and the doctor misreading the film. That happened to me once too--I had my first appointment with the neurologist at a big MS clinic and she had put the wrong films up and started discussing them. What she was saying made no sense to me at all...I thought I was having cognitive problems until my husband noticed on the film in the lower corner that it was someone else's name. She had to go find my films and bring them back and start over. Needless to say, she was embarassed. Sounds like your doctor just had a mixup with Amys. But I know it is extremely upsetting and I am sorry you thought you had good news and then suddenly got the bad news.

I couldn't tolerate Copaxone (systemic side effects) and the interferons put my depression into a tailspin in only 2 1/2 weeks on them. So I went to Tysabri. It is an overwhelming prospect to go on a much stronger scarier drug but it has helped me so much and I'm glad I made the choice to try this. Good luck with your decision for a new drug and I hope you feel better soon.

What a terrible experience for you, the relief then the shock. My heart sank when I read your thread.
Time to pick another weapon perhaps.

Natalie, can I ask how long you have had your DX and how long you were on Copaxone before moving to Interferons and then ultimately to Tysabri? How long have you been on Tysabri? I am trying to get my head wrapped around all of this information and would like some input from others as to how they made their choice of which DMD to go on.

Hi Amy,
I was diagnosed in Sept. 2007 tentatively. It was confirmed in Dec. 2007. In Feb. 2008 I went on Rebif (or what I call Rebarf!). I was only on it for 2 1/2 weeks. Not only did it make me sick every single day in a row with no break, but the depression came screaming back--that very black kind which I haven't had in years. I decided to go off and within a few weeks my depression lifted. The whole thing was so strange. I then went on Copaxone for almost 7 weeks. I had horrible insomnia, jittery anxiety, fatigue, headache and extreme nausea. I just happen to be very sensitive to meds. My quality of life diminished and I couldn't do my job. Then I went on Tysabri in July 2008 before any post marketing PML cases appeared. I've been on it for 18 months and am very happy with it. It has allowed me to forget that I have MS...just 1 day a month I have to deal with needles and my fatigue lifted so I feel almost normal. I have had no changes on my MRIs in the past 18 months. One thing to consider is that it is quite safe statistically to take it for 12 months. You could commit to just one year and buy yourself some time until the pills come out and the possible antibody test for JC virus which causes PML (there is talk this could be coming in a few months). I hoped to just buy time I may go off at #24 because of the PML risk.

I hope this helps you. Good luck with your decision!

Copaxone took a YEAR to start working for me! Most patients "START" to show that its working in 6 months, and some can take up to 18 months to show stability.

Is this the only DMD you tried? Have you tried others? Copaxone is amazing, but you must give it time to work. Significant increase may throw you onto another DMD such as Betaseron, or Rebif, or even Ty.

Please know that you have a bunch of folks cheerleading for you, and praying with you.

hang in there.

Thanks Dejibo! When I talked with the Dr., he felt that the amount of changes are significant enough that he would like to try something else. He said that he doesn't tend to 'overreact' this soon into a treatment plan, but he really feels that the changes I have had are significant enough that he would suggest that we be more aggressive in the hopes of getting a better response. One of my options is to go on Tysabri for 1 year and then re-evaluate the possibility of trying Copaxone again. He didn't feel that Rebif would be a great option for me because of my Depression history...and going on another round of Steroids may not be good either, since I was "out of my mind" when trying to recover from that.

hi amy,

i'm so sorry that this high and low happened to you.
it sounds like you are a level headed woman.
i hope the other options are viable ones for you and that they will work to decrease your MS activity.

i'm rooting for you.
please keep us updated.