Seven months on Copaxone.... and it's not working
 

I just started my 7th month on Copaxone and went in for a MRI last Wednesday. The MRI was scheduled at 7:30 am, and my appointment with my Neurologist was at 9:00 am. After completing the usual sensory and coordination tests we talked about the MRI films. My Dr. took a look at the films from that morning and compared them to the set from last spring. He said that he really didn't see any changes and felt good that the Copaxone was doing its job. This was a huge relief especially since I just went through a pretty bad episode in October and I was concerned that my brain would have lit up like a Christmas tree! I left the appointment feeling so good that the daily injections were actually working.

The next day my DH and I met for lunch and were talking about how great it was to get a good report the day before and we both were feeling quite relieved. When I got back to work after lunch, my phone was blinking with a message. When I listened to it.....my heart absolutely sank when I realized it was from my Dr. He asked me to call him back at my earliest convenience and when I do call, he wanted me to ask the nurse to put me on hold and ask that they come and find him to let him know I was on the phone. My heart started racing and the tears started to well up in my eyes......

When the Dr. came to the phone he started to apologize to me right away....I couldn't comprehend what was happening at first, but realized that he was apologizing for making a very unfortunate mistake the day before. Aparently he pulled up another patient's file, one whose name happened to be "Amy" too . That Amys last two sets of MRIs did not show any obvious changes but when he recieved the Radiologists report Thursday morning he realized that he had not been looking at my films at all the day before. When he read the report and compared my films......the results were not good. My MRI shows a significant increase in the number of active lesions and it is very clear to him that the Copaxone is not working, so he wants to see my DH and I at 8am Monday morning to discuss where to go from here.

I am absolutely crushed. I can not stop crying, I have not been able to focus and I feel completely off balance. My concern is that I am not a good candidate for Interferons because of my chronic depression and now Copaxone is out, so all that is left is Tysabri, Cytoxin and Imuran .....at least I that is what I understand. I hope I can get some rest tonight.

Oh Amy. First and foremost, you have my sympathy that your doctor mixed up your report from another patient.

Second, do you feel any different? Was it a surprise that you have more lesions. Are your sx's worse or was the news worse than the reality?

Third, Copaxone is not a cure. If it was, EVERYONE would be on Copaxone as a first choice. It is only one of the ABCR's. Like the rest of the DMD's, it has a 30% effectiveness in reducing the possibilities of further exacerbations.

That means you are in a 70% majority.

But it is more about how you FEEL rather than how you feel about the news that you have more lesions.

Do you take an AD? If not, start the process of finding a good one for you. MS and depression go hand in hand.

I am sorry for your results.

Oh, Amy, I am so sorry. :( Copaxone didn't work a spit for me, either. :mad: I think Avonex may have been working, but I couldn't take the side effects.

I hope you find something that works for you.....Don't forget about LDN..:hug:

Copaxone takes at least 6 months to begin showing a positive effect (slowing progression is the ideal). As others have mentioned it's not a cure, and it won't work for every person on it.

With that said, if you've tried the other options and it's a last shot, I'd still give it a chance if your budget allows. Or get a second opinion maybe?

I still feel that 6 months on Copaxone is not enough time to be looking to MRIs to see if it's working or not. I'm very sorry regardless to hear that your MRIs were showing a lot of progression, and that your doctor called you with someone else's info :eek: That alone would freak me out and question his or her integrity.

Unfortunately, my symptoms have gotten worse. My speech is getting more slurred and my balance has not been very good either and my short term memory is getting shorter by the day. I wiped out in a parking lot about amonth ago and still have the deep scabs on my knee, and then I fell out of the van last weekend but thankfully was able to grab the car next to us to break my fall. I have been trying to ignore the sx's....but it's getting harder to do.

I have been on ad's for about 15 years, and am monitored at least quarterly to keep me on track. I was just not expecting to have news like that I guess. My Dr. really regreted having to tell me this information....I'm sure it is not a conversation he would want to have with anyone. I do not blame him though, he's human and that is exactly what I wanted in a Dr..... one with a "heartbeat" and one that has compassion, of which he has both.

I have not even investigated LDN yet.....I guess I am still hoping that I will wake up from this nightmare....

It's definitely worth a try. You can even take it while still giving Copaxone a chance.

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. :hug: :hug: :hug:

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. :hug:

I am sorry both for your bad news, but especially for the way you received it, the mistake that was made. Hopefully your Dr will check whose MRI he is looking at, before discussing it with the incorrect patient. When I have seen my MRIs my name is clearly visible.
I remember well the day my brother and I went to the reputable MS clinic at Oregon Health and Science University, we were told that we did not actually have MS. A relief. Instead we both had an adult onset of an unknown leukodystrophy, a fatal genetic problem. My MRIs do not have pinpoints of myelin damages characteristic of MS, instead there are large areas of damage, plus several areas of pure stroke damage.
Ironically, my father was a neurologist at the Mayo Clinic and was the world's leading expert on MS. When I was initilly Dx'd with MS, I read some of his publications which led me to the conclusion that the MS drugs makers were fudging their findings and could not be trusted, so I did not go on the MS drugs, and am thankful now for that decision.