Starting Copaxone Soon

[South7]

Hello all,

I'm going to be starting Copaxone soon. I was dx PPMS in 2008 but haven't been on anything yet. At this point, I feel that optic neuritis is my worst symptom. I have it on and off throughout the day, every day. I do have a permanent blind spot now, but when my vision is good, I can see quite well.

Just wondering if there are any other PPMSers on here with ON like this. Has any type of treatment helped? Have any type of glasses helped?

A year ago my dr said that if I went on copaxone, my vision should stabilize or possibly improve slightly. When I saw him a month ago, he seemed to have changed his tune about that. Not sure why.

[Redwings]

Hi South7:
I don't have PPMS (I have NMO), but over about 20 years I've had more than 50 episodes of optic neuritis affecting both eyes, resulting in permanent damage, and I've studied ON extensively.

Glasses don't help optic neuritis or its damage. Glasses help refractive, or light focusing, error. ON is a physical problem affecting the ability to transmit electrical signals from the eye to the brain. It isn't a light focusing problem, so glasses don't help. Glasses will help the part of vision that's still working properly IF that part of vision is affected by refractive error. Glasses will help your focusing if you have refractive error, but they won't help blind spots caused by physical damage to the optic nerves or brain.

Also, the term "neuritis" refers to active inflammation. If you don't have ongoing, daily inflammation -- which isn't typical, especially in PPMS, which is more degenerative than inflammatory for most prople -- it isn't correct to say that you have optic neuritis "on and off throughout the day, every day." (That's like saying, "I'm in a car accident on and off all day, every day", when there was one accident that happened and caused damage months before.) What you most likely have instead are the after-effects of ON, which are the effects of optic neuropathy. After ON, there can be good days and bad days with vision even though the active inflammation subsided months before. (That's certainly true for me.) The visual effects are the result of an injury, but not a constant, ongoing injury or inflammation. If you're going to understand what's going on with your vision, it's important to not be pulled into using terminology that sounds dramatic and impressive, but simply isn't true.

A year ago my dr said that if I went on copaxone, my vision should stabilize or possibly improve slightly. When I saw him a month ago, he seemed to have changed his tune about that. Not sure why.

Your neuro may have changed his tune about that because what he said wasn't true. There's no way to know if any medication allow for vision to improve. In fact, the longer a visual deficit from ON has been present, the less likely it is that it will improve.

[South7]

Thanks for the reply Redwings - that is a lot of "good" information. I guess I will have many questions for my next appt in March.

I mean, I guess I am just grasping at straws here. It's just very frustrating. From when I was small I always thought that going blind would be my worst fear and now I feel like it's coming true....I don't know. That's all for now.

[marcus8560]

Hey there South7; I was given a book by the neuro. I took it home and read it. Quite often I go back for reference. One of the topics were drugs . Copaxone is not for ppms according to this book. So I stayed away from it. A year later I changed Neuro and she recomended Copaxone for me. She claimed its the safest and will keep ms from progressing. I did copaxone for 2 years. Durring this time leg spasims and stiffness occurred. Especially while laying down. Fittness therapy and staying active through the day is what helps alot. But stiffness was always present no matter what I was doing.2 days ago I decided it was in my best interest to stop copaxone. Today has been one of my good strong feeling days in a long time. I also feel more light hearted with my thinking. So far I feel I made a long overdue decision. Im not telling you dont do copaxone Im just telling you my personal experience. Hope it Helps.

[South7]

Yep, marcus, I hear where you're coming from. I guess I'm just trusting the opinion of my neuro... especially since at the time of my dx it was like, he didn't think my MS was "typical" PP or RR. Confusing as usual! But, I figure I wouldn't want to not give it a try and then regret it. I guess I'll just see how it goes! Meds came in the mail and my appt for training is next Tues. The experience you've had is definitely something I'll in mind. I'd be curious to see how you're feeling as time goes on, without the Copaxone.
Thanks!