Copaxone, Tysabri, Steroids...making sense of treatment strategies

[Mable]

I was diagnosed at the beginning of this year, 50 years old, and have been on Copaxone 3 months. It's too soon to tell how it's working; in fact, it's too soon to tell how aggressive my MS plans on being. Clinically, I'm in pretty good shape. My MRIs and spinal tap say otherwise. If we could stop my disease progress right here, I'd have no complaints at all.

A couple days ago, my neuro suggested we could up my results with quarterly steroid infusions. But I'm thinking if we really want to up my odds, why not go straight to Tysabri? Or better yet, let's get the Lemtrada and really knock the MS out of the park.

When I listen to MS neurologists on the internet, it seems they are all excited about the new more aggressive drugs--even for people new to the disease.

Here's where I'd like to hear your thoughts:

I wonder if I'm a fool for being an old-fashioned Copaxone girl who's just hoping nothing else bad happens to me as my brain atrophies and I wait for secondary progression.

I'm currently leaning away from the steroid pulses. But I'm interested if anyone out there has experience using steroids in this way.

I'm also curious about any thoughts you all might have about staying on CRABs when all action is over at the Tysabri/Lemtrada/Stem Cell discussions on this board--lots of happy people feeling good! Yet I don't hear so much "Copaxone changed my life" here. Why not? Should I push for a more aggressive therapy?

[kriscake]

I am in a similar boat(pretty sure it was ms 1yr ago but dx a few weeks ago for sure). I am pretty healthy so far... slightly gimpy on my left, bit of numbness in my hand and left side with some fatigue but all in all, like you, if it stays this way, I would be happy.

My ms neuro first said we could start with copaxone and oral steroids but changed his mind and said we should go on and step up to rebif.
I have not started the rebif yet, my appt is next friday.

I would be interested to hear what others have to say as well.

[BigA]

I was diagnosed at the beginning of this year, 50 years old, and have been on Copaxone 3 months. It's too soon to tell how it's working; in fact, it's too soon to tell how aggressive my MS plans on being. Clinically, I'm in pretty good shape. My MRIs and spinal tap say otherwise. If we could stop my disease progress right here, I'd have no complaints at all.

A couple days ago, my neuro suggested we could up my results with quarterly steroid infusions. But I'm thinking if we really want to up my odds, why not go straight to Tysabri? Or better yet, let's get the Lemtrada and really knock the MS out of the park.

When I listen to MS neurologists on the internet, it seems they are all excited about the new more aggressive drugs--even for people new to the disease.

Here's where I'd like to hear your thoughts:

I wonder if I'm a fool for being an old-fashioned Copaxone girl who's just hoping nothing else bad happens to me as my brain atrophies and I wait for secondary progression.

I'm currently leaning away from the steroid pulses. But I'm interested if anyone out there has experience using steroids in this way.

I'm also curious about any thoughts you all might have about staying on CRABs when all action is over at the Tysabri/Lemtrada/Stem Cell discussions on this board--lots of happy people feeling good! Yet I don't hear so much "Copaxone changed my life" here. Why not? Should I push for a more aggressive therapy?

There are major issues with Tysabri (Death) and I don't know how many people are still on it after 5 years. It's also said to have a rebound effect. If your disease is not agressive, I think no need to jump all the way to Tysabri.

the people who are stable on their DMDs don't shout about it. You're right about being happy if the disease stops here. that's the goal.

Copaxone and Rebif are said to be equally effective, Rebif only becomes active 3 months sooner. But there are advantages to Copaxone - you obviously haven't had a shot of interferon yet.

Do you research online. Here's an article that showed Copaxone with even better results than Rebif. But in general, they're all about the same (The CRABs).

http://cc.bingj.com/cache.aspx?q=Two...cf9d1,9fdeed67

I agree with you on the pulses. There's research out there.

[jojo18]

he market

i was dxd 8 years ago. first i was put on avonex. after a year it was decided that it wasn't working and i was put on novantrone for two months to wait for tysabri to come on the market.
piremental tr
well, had one treatment b4 was pulled after two ppl died on fit. I was put on rebif for the next four years.
tysabri came back on the market. well on my 2nd treatment i went into anaphilatic shock

since then i have been on copaxone, an experimentfpal treatment waiting for fda approval, an old drug being tried for MS
so in short,i would to the new drugs to see if these are any side effects that did not appear in the trials

[WALKINGHORSEWOMAN]

my experience only

I can only share with you my experience. When I was first diagnosed I was in denial and didn't want to believe the experts. They were pushing me to Rebif or Tysabri. I decided since I had only had one attack I wasn't going to do either- I was going to be one of those people that had that first attack and the disease never was going to get any worse. I had my first round of steroids and was back on top of the world, if not on my horse.

Well, fast forward 6 months and I could barely walk, all kinds of trouble everywhere. OK, I'll do steroids again and consider going on Rebif. I decided the possible side effects of Tysabri were not worth the risk and besides, if I go on Rebif now what will I do if I get worse in the future and have already used up that option?

So I went on Rebif, and HATED it. I have another post on here from long ago about my experiences with Rebif, so I won't detail that again.

So after another 6 months it was back to my doctor I go. I hadn't had any flares or problems, just wasn't going to deal with the Rebif issues anymore. So I was switched to Avonex, which I love, love, love and put on a program of monthly steroids. Other than the weight gain from having the non-stop munchies I noticed no problems.

Today I am on Avonex, am steroid free and best of all I have the majority of my life back. Symptom management is, in my opinion, key. Yes, it is a huge decision to decide which of the meds you are going to go on, if any at all. But the day to day management of the disease is really where I am more focused.

[Cat Mom]

Yet I don't hear so much "Copaxone changed my life" here.

Me! I'll say it... "Copaxone changed my life". I'll stick up for it. Short version... dx in 2005, went on Rebif which didn't work and made me feel worse than MS did. Started Copax in 2007, had 1 steroid worthy flare in Jan 2008 and 1 in Jan 2009. None since and no new lesions either (knocking wood as I type).

Since all of the treatments work differently, it's a crap shoot as to which one works best. The newer ones seem to have much more serious side effects that scare the pants off me, Copax has been on the market for a while and has proven results for lots of us. I also like that my liver won't stage a protest and say, "I'm outa here" because of Copax.

It never hurts to research different treatments just in case but I hope that you have some success with Copax. I'm guessing that your neuro wants to do some steroid infusions to keep inflammation under control but not sure.

I hope you have good results with it and that you don't have to go the aggressive route. Please keep us posted.

Jen

[BigA]

It's a common missunderstanding that the meds are supposed to make you feel better or even get better. Truth is, you will feel worse and if you're lucky will get better, but will not get worse.

That's it. It's still preferable to getting worse. If you were in a car rolling towards a cliff, you'd be happy for a brake that slowed you down or even stopped you.

So take the meds, put up with the shots and hope to live a full life.

[Temagami]

I´m coming up on one year of copaxone and have not had a flare since the initial hospitalization (knock on wood). Am awaiting approval to switch to gilenya. Did lots of reading on the UK MS site which has a great link to read about which DMD is best for YOU. I decided that flu like symptoms were not for me, nor the risk of depression or liver issues and that is why I opted not to take the interferons. I would read more about the steroid treatments as they increase your blood sugar which can cause vision issues, they mess with your bone strength and can cause stomach lining problems. Unfortunately I underwent the steroid Rx in the hospital without fully understanding all the downsides and if/when I encounter another flare, I will think carefully before opting for the steroids as they do not alter the ultimate flare recovery outcome- as far I´ve read. Please do opt for a DMD as the soonmer you start one of them, the better your outcome.

[NaiEve]

I'll second the "Copaxone changed my life" sentiment.

After diagnosis, my neuro put me on Rebif which was a disaster. After a switch to Copaxone (and about 10 months) I felt better than I had in the years before getting diagnosed. I am now 20 months without relapse ...

I know Copaxone isn't ment to address symptoms but I do feel like I got my life back and hope I can remain stable for a long while.

Good luck!

[Brenda Topping]

Copaxone is BEST

My mom has been on copaxone for over 20 yrs now. My uncle was on interferione B. Talk about night and day. MS ended up getting my uncle and he ended up losing the battle. My MOM if you saw her you wouldn't think she had MS. The copaxone has been the best and her recent test showed MS has actually went into submission. Her MRI scans show major plating on her brain. but she seems to be doing quite well she has her time with muscle spasms and forgetfulness but her nerologist has told her if she didn't take the copaxone she would have lost the battle as my uncle did. There are some recent studies about double dosing the copaxone to "knock out MS" but government cost etc has postpone the clinical trial to commence.

[maarc]

Mable i have read what you have written here and its interesting

I was diagnosed at the beginning of this year, 50 years old, and have been on Copaxone 3 months. It's too soon to tell how it's working; in fact, it's too soon to tell how aggressive my MS plans on being. Clinically, I'm in pretty good shape. My MRIs and spinal tap say otherwise. If we could stop my disease progress right here, I'd have no complaints at all.

A couple days ago, my neuro suggested we could up my results with quarterly steroid infusions. But I'm thinking if we really want to up my odds, why not go straight to Tysabri? Or better yet, let's get the Lemtrada and really knock the MS out of the park.

When I listen to MS neurologists on the internet, it seems they are all excited about the new more aggressive drugs--even for people new to the disease.

Here's where I'd like to hear your thoughts:

I wonder if I'm a fool for being an old-fashioned Copaxone girl who's just hoping nothing else bad happens to me as my brain atrophies and I wait for secondary progression.

I'm currently leaning away from the steroid pulses. But I'm interested if anyone out there has experience using steroids in this way.

I'm also curious about any thoughts you all might have about staying on CRABs when all action is over at the Tysabri/Lemtrada/Stem Cell discussions on this board--lots of happy people feeling good! Yet I don't hear so much "Copaxone changed my life" here. Why not? Should I push for a more aggressive therapy?

Hi Mable do you have facebook. I have ms myself its not real good. I do have experience with steroids pulse and infusion, i would love to chat with you some more.thanks

[marybenes]

I'm another "Copaxone changed my life". I've been on it since December 24, 2003 and have never looked back. I am so grateful that this was the therapy my docotr recommended this to me. I've also been relapse free since diagnosis.

Yes, I know this can change in a nanosecond but I'm riding the wave for as long as possible with it. Individual results vary as they do with drug you're on.