Last reply 2 years ago
Stopped Copaxone

Hi everyone,

I recently joined and this is my first time trying to connect with people struggling with the same thing as I do! So … Nice to know you all! 🙂

I was wondering if there is anyone here who has stopped using any MS medications especially Copaxone because they are doing just fine and might not need meds ?

I was diagnosed in 2013 and started using Copaxone a year after. A month ago had a new MRI scan and apparently there are only 2 new lesions compared to 3 years ago which the neurologist found good news and apparently shows MS is not so active. I also haven’t had any symptoms of MS in the past 2 years or since I started Copaxone. I have had only two attacks ever since I was diagnosed and before I started Copaxone which was only skin imitation and numbness and the second attack the same skin irritations but this time with fatigue and weakness in my right arm.

I have however been struggling with upper back pain for the past 2 years which has limited me even more than MS! nobody has found out yet the reason for my back pain but it might be a combination of stress, bad posture, and low activity! That’s a mystery ! But the neurologist suggested that the only way to find out if it’s a side effect of Copaxone (which is according to the Dr unlikely), is to stop the meds since I haven’t had any complaints. Now I don’t want to get too excited too soon!! but to be honest, I’m not even sure the doctors are right whether or not I have MS! Maybe it was just a temporary thing and it’s not going to happen again. Or maybe that’s just me in denial! :))

Anyway, I appreciate to know your story if you have had the same experience. Is there anything I should expect, or do (except for being positive which I am trying to be!). Or just wish me good luck! I just generally like to open up a little for the first time after my diagnosis! 🙂


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2 years ago

Ok. I’m going to tackle this one.

I’ve had MS for 30 years. I wasn’t diagnosed until 2001. I was put on Avonex. I did well with no relapses or obvious progression. I thought “I don’t have MS, I must have been mis-diagnosed”. I also couldn’t stand that long needle. I stopped my meds. It only took several months after stopping Avonex that I had a serious relapse.

I went back to the Neuro. She put me on Copaxone. Things went pretty good for some time after until I couldn’t stand the injection site problems. Instead of seeking a solution to that I once again convinced myself I didn’t need the meds. Wrong answer! I had another nasty relapse.

Again back to the Neuro. Oh…and mind you, each time I had to find a new Neurologist that took my insurance. This was the last time I was going to question the professionals. I am now taking Techfidera and doing well. I’m not without problems and I take all the help I can get.

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