Lesion question

[alishape]

At my last neuro's visit, the nurse was talking to me about possibly changing my medication. This is something that my doc was thinking about the last time I visited, but decided to stick with the copax. It turns out, every time I go there I have a couple more lesions and the ones I have are getting bigger. I am not really sure what the exact rate of increase is. So anyways, my balance had gotten really bad and my daily headaches increased to the point where I went to get some steriods. That makes the second time this year that I've gone in to get some. I think - my memory is not what it used to be, lol - I've been in the hospital four or five times in the last 2 years or so.

So I guess my question is if the copax isn't working, does that means I have to take something stronger like tysabari? That medicine is for progressive (secondary?) MS, so if I have to take it then that's the kind of MS I have. Of course I am hoping to switch to the new pill, but I think if copax doesn't work I will have to take something stronger, and that means my diease progression is faster than I thought it would be. I know I am not being very clear here, but I am running low on facts. She said that she and my neuro would decide after a new MRI whether or not the copax was effective enough. I have nothing to do but speculate until then.

[Mamabug]

These are questions, Ali, that I would ask your doctor.

Is it simply your assumption that, if the copaxone is not working, you need something "stronger" than Copaxone? Perhaps, you just need something different than Copaxone.

My story:

• I was dx with MS in 2003 (following almost 2 years of limbo). I was put on Betaseron.
• I remained on Betaseron for about 5 years. My MS symptoms were somewhat a-typical, and I had flares once or twice per year that usually landed me in the hospital for 1-3 weeks each time.
• My symptoms had also progressed. I experienced more problems with balance and fatigue, for example. Some of my other symptoms were the "bad" every time I was in a flare, and, I had experienced "bad" flares, right from the beginning of my MS onset. In 2008, I lost my 3rd job within 6 years (since my MS "limbo" began), and I went on SSDI (disablity).
• In 2008, I also switched from my general neurologist to an MS Specialist. She told me that, in general, if a person with MS is having flares once per year, while on a DMD, the DMD is only borderline-effective. She said, "You aren't even borderline", and switched me to Copaxone.

She didn't say:

• "You need to take something 'stronger'."
• "You are progressing from RRMS to SPMS."

Perhaps your doctor is not saying that either.

Since my switch from Betaseron to Copaxone, 5 years ago, I continue to receive SSDI.

• Since I am home more, I am able to focus on my health.
  • I take the naps that I need.
  • I watch my diet, including taking healthy supplements.
  • I lost 60 pounds in 2010/2011, and have maintained that weight loss.
    • I discovered, while changing my diet in order to lose weight, that I had some gluten intolerances. I have significantly reduced my gluten (about 3-4x per week, rather than 3-4x per day). I notice that some of the symptoms (ie: diarrhea) that I used to assume were MS-related are related, instead, to my gluten consumption.
    
    
  
  
• I work, very intentionally, at attempting to prevent stress in my life, by being careful about what I say "yes" to and what I say "no" to. I do not feel guilty when I say "no". It is simply a wellness strategy to manage my health, just like taking my Copaxone is. (And, it wouldn't make sense to feel guilty for taking Copaxone -- would it?)

It isn't, Ali, that Copaxone was "stronger" than Betaseron. It is simply that we are all different. And, different meds work better for different people. They work differently in our bodies.
For me, Copaxone was a good fit. For you, it does not seem to be very effective, so, hopefully, you will find something that IS a good fit.

Please don't make assumptions without asking the appropriate questions of your doctor. You might be worrying unnecessarily.

~ Faith

[22cyclist]

I agree with Faith. I was on Copaxone for many years. Then one year I started having 4 exacerbations in the course of that year. My MS specialist said it was no longer working. Not that I was getting remarkably worse, or that I had SPMS. I went on Rebif. It gave me a rare reaction of bone marrow failure. I had to go off of it and could no longer use interferons. Now I am on Tysabri. It has stopped my progression in its tracks. I had one exacerbation early on before the Ty built up in my system, but after that it has been smooth sailing. You just have to find the right med for you and your MS.

Pick another and see how it does for you, its kind of a crapshoot, but when you find one that works, it is great!

Good luck to you!

Lisa
Moderation Team

[alishape]

Thanks

It looks like it is far more probable that I can find a new medication that will work than it is that I have the rarest form of MS. Thanks so much for setting my mind at ease, well easier .