Saturday, July 21, 2012

Goodbye Tysabri...

Well, here is my update to my previous post...
I went to my neuro on Wednesday & we had a LONG discussion about what we were going to do.

So to get the spasticity issue solved, we decided to taper off the Baclofen & start on Tizanidine. Just waiting for the script to be filled and I will start that soon, already trying to taper off of Baclofen but not having the Tizanidine to compensate is very difficult and painful.

So he asked me what I would pick out of the approved medications we have right now to slow progression. I deliberated and eventually answered Copaxone, due to it's success rate. My neuro agreed with me & we put in the paperwork for me to start Copaxone, so just waiting on that at the moment.

I understand that I shouldn't just wait for BG12 to come out... not being protected during that time. I of course would worry about relapsing and my neuro also expressed his concern about not being protected.

So at least now, I can say that I will be taking a medication to "try" and slow the progression. I'm not trying to sound negative at all about taking a med to "try" and slow progression, but none have shown to STOP progression, that's what I'm saying.

I'm also not going to get my hopes up right now, because that seems to jinx it all lol I just sit here and believe there is a plan for me and it will all fall in to place.

Even though I haven't been diagnosed all that long (diagnosed 8/30/10) I have still done A LOT of research and stay very active in the MS community.

I'm really enjoying that there is all of this new information coming out about MS and the trials they are doing. But I'm just sitting here wondering, when the SYMPTOMS are going to be addressed. Yeah, I want MS to be cured... and for better meds to be available... but I also want something to address the damage that has already been done by MS as well.

And while I hear people say "they're getting closer to a cure"... yeah they could be, but how can you be  moving closer to a cure, when you are not even sure of the cause..?

I mean, I just don't want everyone in the MS Community to get their hopes up, like they did when CCSVI was first being brought up. I just don't want statements to be made and not followed through with. It's very upsetting, and there are some people with MS that take everything that researchers say and studies say to heart.

Well, hopefully the Copaxone will be ready for me soon, I'm in a way excited to try it out. I will keep everyone updated on the journey... Be well & STAY COOL! So hot outside! I haven't been going out there at all lol Any errands needed to be run can wait till it cools off.



  1. I was on Copaxone for ten years with good results. The prefilled syringes are great and the injector (which the doctor needs to prescribe) was a godsend for those difficult to reach areas. There is also a copay assistance program through Shared Solutions often making the prescription at no cost to you. I have just started Tysabri and had tested negative for the virus, so we will see how that all goes. Good luck finding a suitable medication and continue to let us know how you do...

  2. Ashley,

    I have been on Copaxone since 1993. I have had 2 children since being diagnosed. I must say, this has been the drug for me. So far (knock on wood)this has been the drug for me. I have not had any new lesions or progression since my firat attack 20 years ago (praise God!). I hope it continues to enable me to maintain my current abilities. Yes , I still have difficulty walking long distances without a cane, but at least, I am able to enjoy life with minimal assistance....I think we have to play the deck of cards that we are dealt, and make the most of it!! Good luck to you!!!