Sunday, August 30, 2009


Well, I am feeling better FINALLY. It's only in the last couple days I can feel my face again, for the first time in weeks. I'm fatigued (yeah steroids wore off) but a bit better than I normally am. I feel as though I'm cognitively a bit better as well, and that's a biggie for me. My left arm and hand are still really weak, and having leg cramping and weakness in both legs, but overall I'd say I've improved. I just overall feel better.

Which, leads me into this post. My neurologist has decided to switch me from Copaxone to Rebiff, because obviously the Copaxone just isn't working for me. Rebif has considerably more side effects than the Copaxone, namely flu like symptoms from the injections. I'm currently waiting for the insurance company to get through all their lovely red tape in order for me to change my meds. In the meantime, I didn't refill my Copaxone prescription for two reasons. First, it's not working so why bother? And second, I really wanted to see how I feel off it.

I have been off all DMD's (disease modifying drugs) for a little over two weeks now. After my steroid infusion, I was good for all of maybe 3 days and my body went right back to hell. It was extremely disheartening. Yet I stop the Copaxone, and I get noticably better. Even my husband has noticed an improvement, not only in my physical state but psychological. I don't think it's a coincidence that I am feeling better after stopping the Copaxone.

I know of many people with RRMS that opt not to take any DMD's. The sad fact is, all DMD's only slow the disease's progession about 30% at best. Of course, that's if they work at all. Likewise, all DMD's have potential side effects, none of them pleasant. Many with MS just find they simply aren't worth it. I mean, if you think about it in terms of statistics, the odds are against them making a significant improvement in your life. In fact, your odds are much greater that due to their side effects your quality of life will decrease when taking them. So, I find myself at a very hard crossroads, a choice that could potentially effect my life long term. Is it worth the potential of slowing the progression of this disease by 30%, if in taking the drugs that do so it seriously decreases the quality of life I have now?

I'm not sure of the answer to that yet. In fact, I'm really struggling with it. I think for now, I will start the Rebiff and see what happens. But if say after six months on it, I find I feel awful constantly again, I will once again go off all DMD's and see if I improve. If I do...well then... much to my doctor's disapproval I may go off all DMD's altogether. I really hope I see an improvement with the Rebiff, but being honest, hoping and expecting are not the same thing. I fear in my not so distance future, I will face the choice of battling this disease without the standard meds used to fight it, or with them at the cost of my daily quality of life.

Oh one final note: I know many others with MS read this. I'd love your input on your experiences with the different DMD's out there, and the input of others who may have decided not to take them at all. Through all my journey with MS, I have found consistantly the best advice I get isn't from doctors, but from others battling this disease just like me :)

Be Well All,

1 comment:

  1. Wow...reading your blog today, couldn't have come at a better time. I've started blogging myself, after reading yours when I was first dx'd in June. I started Copaxone in July and I have to say, that I feel horrible. I do have osteoarthritis in my lumbar spine, but with my chiropractor, it was tolerable. The beginning of July, my left arm got so weak and heavy it was hard to use it (I'm left handed to boot). That all started to wear off, but my joints in my hands and this past weekend my hips and my whole back are killing me to the point where I can't walk without being in severe pain. I was never this bad before I started the Copaxone. I have 18 lesions (all on my brain...goes to show you how much of my brain I don't use hee hee), but have never shown any signs of MS in my past that I was aware of. The reason I went to the ER in March was because of a headache, seeing double and I couldn't talk. But that only lasted about 6 hours. The CT scan and MRI showed the lesions. Apart from that one night, I felt I feel like well...not good!!! I called my neurologist 2 weeks ago explaining about my hand and the numbness and weakness. Seems I should have called immediately back in July so they could have started me on sterioids ...hmmm...see...I'm still a newbie. Now... it's not too late...but they tell me it won't do what it would have in the beginning of what I guess was a flare. I just figured most of this was age anyway. I turned 50 in January...happy birthday LOL Thank God for my sense of humor...I'd go nuts without it.
    Thanks for blogging. Yours was the first and is still the only one I follow faithfully. Be well and thank you for sharing.