I need advice ...
 

Sorry ... this is going to be a little long. There's some background you have to know before you can advise me. So ...

I was diagnosed with MS in 1999 and went on SS Disability in February 2005. Since my diagnosis I have taken Betaseron, Avonex, and Rebif. When I started Rebif 4 months ago, I discovered that it was actually making me worse! After my injection, I was "paralyzed" for a while ... basically my muscles would all stiffen and I couldn't move, even with muscle relaxers. My Neuro and I had discussed Tysarbi and she was excited about it, telling me that she thought I was a good candidate for it and that she thought it would help me. I mentioned Copaxone, but she didn't think it would work for me. So ...

I went to my appointment with her Monday and she told me that she did NOT think Tysarbi would be good for me ... that it was potentially dangerous and she wants me to take Copaxone!

I didn't say anything at the time (which is NOT like me), but now I'm really confused! Are any of you on Tysarbi, and if so, has it helped you? I should mention that my Neuro is not a MS Specialist.

Right now, I'm not taking anything. I have 3 months worth of Rebif that I won't take because of the side effects, and I don't want to fill the prescription for Copaxone because I don't think it will help. I really want to try Tysarbi, (I'm not worried about the dangers), but I will probably have to change doctors and I'm reluctant to do that. I've been with this Neuro for 5+ years and we have a good relationship. It's just that this appointment was so different. It's the first time I've ever felt so distant from her...that she didn't seem to be concentrating on ME!

Any advice?
Bonnie

HI Bonnie...Welcome.:)

Your Doc may have been having a bad day or maybe she talked to some other Docs who are still wary of Tysabri. Do you still have RR..exacerbations and remissions? Tysabri has really only been proven to help in some RR cases and not SP or PP.

Talk to your Doc more about this and tell her that it's your MS and Your risk to take. Make sure you do know all the risks and are willing to take them.

I've heard mxed results from People on Tysabri....from good to bad or no help at all, so it's not a sure thing.

Good Luck.:hug:

Hi Bonnie and Welcome! I can't advise you regarding Tsyabri but wanted to say hello. I've been on LDN for around three years and seem to be pretty stable. Hope you stick around and good luck with whatever you decide!!

Hello Bonnie,
I'm sorry you had such a bad visit with your physician. I was in the Antegren (Tysabri) study trials, and did very well. The only reason I am not back on it now is because we are trying to get pregnant.

I was in a double-blinded study, but after two months realised that I had to have been on the real thing because the changes in my symptoms were so obvious. If there is an MS Centre near you, I would suggest seeing someone who is more familair with Tysabri if you are sure that's the route you would like to take.

I know that if we are not able to conceive in another year or so, I am going to start taking Tysabri. It seemed to work very well for me, and after the warnings came out, and the study was over, it was not enough to scare me from taking it again. Good luck to you. I hope you start to feel better soon.

All the best,
Chris

Flaunt, I'd go back and ask her why she thinks it would be dangerous for you, and come prepared with a friend, paper & pen, or a tape recorder. I'd ask for a detailed explanation.

My MS Specialist and doctor did not recommend the CRABs (or steroids) for me, in particular, because of where my damage was (mostly the spine). He said the CRABs are not effective for these lesions. Since I only had a few in the brain (after 12+ yrs), he did not think this was a good approach.

I went home and did my own research, and in the end I agreed with him. That is what I suggest you do; find out "why" this is your neuro's recommendation, then research yourself. If you don't agree, then seek another opinion.

Cherie

Hi, Bonnie, I can only second what the others have said. It's important for us to be our own best advocates because opinions vary so widely among neuros. My neuro is terrific, she's not a specialist in MS and sends me to one when we need to make a big decision. We all benefit from the extra input.

Maybe you don't have to sever your relationship with this neuro, but rather, add another member to your team?

I know several on Ty who are doing quite well with it and swear by it. Also, a handful for whom it did nothing, along with others who didn't tolerate it well. This doesn't help support a decision, but it does show that again, every med works differently for each patient. One more joy of MS. ;)

Hi Bonnie

Unfortunately, there are those nuerologists out there that refuse to be educated about the benefits vs risk ratio of Tysabri. They only hear the bad and it sticks with them forever. I am sorry you have run into one of them. I have run into them at the conferences I have attended. Sometimes, once they get the facts and hear it from their colleagues, they usually change their minds. ;)

There are about 17,000 patients who have been on Tysabri with no cases of PML since its re-release in 2006 (that was the reason it was pulled from the market shortly after its initial release in 2004).

As has been suggested already, get the information you need from several different sources (I can provide several for you if you need them) and go back to this doctor and ask "why am I not a candidate for Tysabri?"

If you have a relapsing form of MS and meet the other criteria, then why not give it a try? As with any of the current disease modifying medications, some work for some patients and some don't work. But you will never know if you are not given the opportunity to try.

Being your own best advocate is the only way to get the treatment that is best for you. Education is power.

Good luck with your doc, and don't be afraid to find one that will work with you. There is a number you can call to find a neurologist that is TOUCH certified in your area (able to prescribe Tysabri).

And no, I am not on Tysabri...just well informed and an advocate for MS Patients.

Thanks ...
 

Thanks to everyone for the excellent advice. It's always good to know that my thinking is in the right direction!

Bonnie

Welcome to Nt! Have not been on that one yet so no advice from me! It will be nice getting to know you!