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**ewizabeth** · 11-25-2011, 09:58 PM

I was on Copaxone for over two years and switched to Tysabri. I had been feeling good with Copaxone and unfortunately had worse symptoms with Tysabri along with the increased risk of very serious side effects.

If Copaxone works, stick with it.I took Tysabri infusions for three years then went back to Copaxone and I've felt great since switching back.

**BigA** · 11-25-2011, 10:37 PM

The phrase "candidate for Tysabri" is a very poor description and there are many things to consider before making such a large switch.

1) You can get the JC virus any time, even the next day after your first infusion, so it's not much protection

2) It's serious medication and your risk of PML increases with every single infusion. Did you know that PML is a demyelinating disease? According to Wikipedia, it's similar to MS but "progresses much more quickly". That's if it doesn't kill you.

3) There is a rebound effect if you stop. That means if you stop suddenly, you have a larger chance of having a relapse. Even if you are given copaxone and steroids. Here's an interesting article about Tysabri:

http://www.overcomingmultiplescleros...l+activity%3F/

4) Avoiding shots is a poor reason to take on such a danger. If you really must, take Gilenya or Avonex (it's one shot per week). But if you're doing well, then take your own advice that "if it ain't broke, don't fix it"

**april may june** · 11-26-2011, 12:55 PM

Ewizabeth, and BigA:

Thank you both so much for your replies. I think that you two are right, switching when there's no real reason to wouldn't be a good idea.
My brain, heart, and gut was telling me to stick with Copaxone, but I guess I just needed confirmation from people who actually have MS that I was making the right decision.

**chalknpens** · 11-26-2011, 02:23 PM

How long?

I was on Copaxone for four and a half years. The last year I had two to three times the fatigue I had had before diagnosis, and ended up leaving my thirty year career in teaching because of the fatigue, depression and worsening memory issues.

Copaxone does, in the fine print, say that it contributes to depression and fatigue.

I stopped the copaxone a month ago and have more energy, more interest in life and better (but not great) short term memory.

Just my story ... may not be yours.

**BigA** · 11-26-2011, 02:33 PM

Originally posted by april may june View Post

Ewizabeth, and BigA:

Thank you both so much for your replies. I think that you two are right, switching when there's no real reason to wouldn't be a good idea.
My brain, heart, and gut was telling me to stick with Copaxone, but I guess I just needed confirmation from people who actually have MS that I was making the right decision.

I made myself crazy for a year after starting Avonex, wondering if I had chosen the right mediction. After 1 1/2 years, I'm pretty much settled on the Avonex.

If you can handle the shots, Copaxone is a very good and usually safe medicine, but more importantly, it seems to be working for you.

I don't think there are any people who have been on Tysabri 10 years, but there are loads on Copaxone and Avonex. They both have good safety records. As chalkpens points out, we all have our particular reactions to each medication - another reason to stick with what works.

You will likely become more comforable with your decision with time.

**bluuangel** · 11-27-2011, 12:04 AM

12 Years on Copaxone

I'd say if Copaxone is working well for you, then continue on with it. I had those bad reactions 2 or 3 times in the first 1 1/2 years on Copaxone, but otherwise have done very well on the medication since. Some things may be changing for me now and my MS doctor may re-evaluate my medication options in January, but I have had a very normal life despite my MS for the past 12 years and I feel Copaxone is largely responsible for that. The needle shots are a pain but they eventually become just part of your daily routine and seriously only 30 seconds of your entire day. When you really think about it, its not a big deal!

**mikek** · 11-27-2011, 10:07 AM

Same here as "Bluuangel". Been on Copaxone for 1 1/2 yrs. Its just part of my daily routine...like brushing my teeth. Really not a big deal at this point. A friend with ms was taking a weekly med (not sure which one) & had very bad side effects. It ruined her weekends, EVERY weekend! She now takes the oral but says that I was very smart for choosing Copax. The side effects are minimal. Cant say I'm "happy" with copax, but under the circumstances, its a great option. A little injection site redness may not look great at the beach or the gym, but who cares!
Good luck

**marybenes** · 11-28-2011, 05:12 PM

I had considered switching to Tysabri when it first became available - I'm on Copaxone. My neuro stopped doing the infusions because he was moving his office. On February 28, Tysabri was pulled form the market due to the PML deaths. I was going to start Tysabri in March. This was my sign to stay on Copaxone and not mess with a good thing. I will be on Copaxone for 8 years on December 24.

That's just my story.......

**LL60** · 11-28-2011, 05:49 PM

april may june -
There is a tread here just of people who are on Tysabri. You may find the answers to many of your questions there. There is a gentleman who posts sometimes there, his wife has been on Tysabri for 10 years. She was part of the trials. Many have been on it for 4 and 5 years. And it seems like lots of people are just starting it and more and more are using it as a first line drug.

I was on Copaxone for 5 years. I have been on Tysabri for 30 infusions. I have had excellent results with it. And the only thing about PML that scares me is the fact that I would have to go off of the Tysabri if I got PML. Almost 90,000 people have benn on Tysabri and unfortunatly out of those 181 has gotten PML. Other illnessess and drugs cause PML, Tysabri is not the only one. You are part of the TOUCH program and you go though questions and such before each and every infusion. You have to see your doctor every 6 months at the very least and have MRI's to keep ahead of any problems.

But if you are one of those 181 or the 55 of those who have passed away, I guess not any odds sounds good to you. And I am so sad that someone died trying to fight this MS stuff.

I had a very unusual and severe reaction to Copaxone and was extremely ill and bedridden for 2 weeks. It just is so hard to know what drug is right for you.

But at least we are living in a time that there are choices. And quite a few of them now. And more to come.

Good luck.

**Lexie** · 12-02-2011, 01:36 PM

I agree with everything Mikek said! I've been on copaxone for 5 months and yes the injections hurt for a little bit but it is well worth it to me to slow the progression! I just take mine right after my bath when I am ready for bed and just jump right in the bed after the injection.

**Kendy** · 12-28-2011, 03:12 PM

Hi there! I was diagnosed with MS two years ago & have only taken Copaxone. I hated the idea of taking a shot everyday, but like many of you have already stated-if it works then don't change it. I find the autoject to be very helpful. If you don't have one GET IT (plus a spare)! As for the small lumps, occasional burning & redness in the area, I find that if I take my shot out a few hours early & let it get room temperature, then I don't have any of these problems. The lumps mostly occurs if I give myself a shot right after taking it out of the fridge and it's still cold.

I had one episode that put me in the hospital. And it scared the heck out of me. Once I was officially diagnosed & started the treatment I haven't had a problems since.

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