May need to switch from copaxone

[silverb1313]

I was diagnosed in 2004. Started copax right away. A resent MRI showed the disease has progressed. My neuro wants me to consider switching to another drug. Has any one else had to switch? Any advise? I have been doing well on copax. No side effects (except i hate doing shot every day, for 8 yrs now)

[HereIam]

Hi Silver. I am sorry to hear of this progression. I'd say yes, we've all had to switch meds, some of us many times. I've gone from Copaxone to Avonex to Tysabri and back to Copaxone.

These decisions were all made with the recommendations of my neurologist, who is your most important team member when making a medication decision. If you are lost looking at the possibilities, let your neuro know that and ask for his/her recommendations on a list of 1, 2, 3, so that at least it's narrowed down for you and you can look at the options in a more limited manner that is prioritized for you.

[Alicious]

My neurologist keeps a record of "strikes against" Copaxone. New lesions, flares, etc. are in that group until we hit the point where he believes I will be better off on another drug. I'd imagine that is what your neurologist is doing as well--there is a certain amount of lesion activity considered within acceptable limits while on a given DMD, and a point where the activity level is too high and a switch may be in your best interests.

I'd do two things, if I were you. First, I'd have the neurologist explain exactly why they think the switch should be made. How much lesion activity/how many flares are OK, and at what point is the switch warranted? Have you just now passed that point, and do the 8 happy years on Copaxone factor in? Those sort of questions might help you feel more confident in a decision to switch.

Second, I'd research the medicine(s) that are your potential new options so that if you do decide to go ahead with the switch, you are ready to get on with it.

[jersey-in-pa]

It is a MonSter isn't it?
I have used Avonex. (5yrs)
Then I got tired of feeling bad in order to feel good, I switched to Copaxone. (1yr)
The blood brain barrier was under "attack" so my Dr. switched me to Tysabri. I'm approaching the 2 year mark in June. I'll say, "So far, so good"
Good luck on your descision

[CougarMama]

I'm getting ready to do the switch too

I was diagnosed in 2003 and started on Avonex. After 6 horrible months I switched to Copaxone and my quality of life improved greatly. It hasn't been the best in terms of managing flares for me but I felt my current quality of life was more important. I'm now at a point where my neurologist wants me to switch from Copaxone to Tysabri. I did test negative for the JC virus so we'll see how it goes.

I'm sorry to hear you've had progression but I have a feeling your neurologist probably knows what he is talking about. I finally had to realize that my doctor sees people like me everyday and has much more experience in dealing with this disease among a wide variety of people then I do. I'm not saying to not ask the pertinent questions but if you don't trust your doctors opinion then it might be time to change doctors. You are seeing an MS specialist (I hope)?

Best of luck to you in making a decision moving forward!

[cranberrysauce]

I am also in your shoes but the reverse! I have been on Betaseron for 2 years now and JUST made the decision today with my neuro to switch to copaxone.

For me, I had the initial lesions at diagnosis on my brain and spine. We did some steroids and waited about 3 months. My next MRI showed more lesions so I went from clinically isolated syndrome to MS pretty quickly. At that point my neuro wanted me on a DMD and basically gave me a choice between Betaseron and Copaxone. I choose betaseron with good luck. I had minimal flu-like symptoms. After about 8 months I only showed one small lesion, so my neuro said he wasn't ready to call the betaseron a failure and to continue.

Now we're at 2 years and I just had a relapse and my newest MRI shows a spinal lesion and new brain ones, about 5 total. Knowing that some people have tons and tons of lesions I was immediately curious if this was "good" or "bad".

My neuro said at this point I have nothing to loose by switching to Copaxone. It was a complete toss up which drug to go with in the first place with no reasonable assumption that one would be more effective.

Since the ideal situation would be no new lesions on a treatment, it makes sense for me to switch. What's the worst that'll happen?!

So, I know the interferons do have some side effects for people but if they're awful I don't see why you'd have to stay on them! I figure I might as well cycle through the first line drugs to see if one works better than the others. If one of them can give me years free of new lesions I'm all for it!

Good luck! I definitely feel your confusion right now. I hope we both find a great treatment that's easy to handle and keeps the lesions in check!!!

[Mynamegoeshere1]

Switch

I was on Copaxone for only 6 weeks and had allergic reactions, so I had to stop. I'm now on Betaseron and doing fine. Everyone is different though and different meds work better on diff people. You never know til you try.

[Mynamegoeshere1]

Another thing

It took only 3 weeks to switch to the Betaseron, but that was long enough to not be on meds to have a relapse. Just wanted you to be aware of what happened to me.

[Alicious]

I posted above, but I just saw my neuro yesterday, and guess what? I'm switching meds due to a new spinal lesion and two flares in 3 months, even though I had no flares in the 14 months before this. Did you jinx me? I'm switching to Rebif since we've decided to try an interferon and that one is as good as any other.

[silverb1313]

Thank you all for your input. This site has always been a great help. I havent talked to my neuro yet but I think I want to start on Rebif. Avonex injections scare me & Beta seems like a hassel, having to mix drug.

[Alicious]

One thing I like about Rebif is that I can remember three specific days a week to do my shots. Every other day, where the actual day of the week changes back and forth? I guarantee I'd be forgetting shots left and right.

Good luck with your switch!