copaxone??

[biddi4]

Hi folks, I thought I'd start a new thread. My one titled "I'm questioning my DX" isn't accurate any more. But as I said yesterday, my neuro basically decided to treat me as if I have MS because my CSF shows O-bands, high protein, and high csf index is high. Plus my recent EMG shows polyneuropathy and signs of demeylination. She feels confident that she's ruled out other conditons that could be causing these symptoms.
I'm comfortable with her decision because there's no doubt in my mind that something is wrong.

Briefly, 3/28/11 I began with a sudden onset of tingling on my entire right side with the foot seeming worse than the rest. After being worked up for Stroke, was discharged with PT. All imaging, normal except for an old lesion that is not believed to be significant. Months later, I continued with tingling. Mostly in my R arm and leg along with weakness. Plus napping was a necessity. I returned to my former neuro, and had the workup. Even though she found O-bands and slightly abnormal EMG, she sent me to a Fibro specialist. He though maybe I had fibro, started me on gabapenton. NO change in symptoms. About a month later I quit that.

So this past May, I found a new nuero in my hometown that I saw. She did the full workup, with only the csf and emg abnormal. I guess my quesitons are:
What does Copaxon feel like, what should I expect? (I'm starting it later today)
What would be the BEST kind of MRI that would help show any lesions?

I guess it's just strange finally getting an answer, but the treatment options don't seem like they're going to do very much. I kinda thought I would get some treatment to make me feel better, but it just seems that I am going to have to deal with the tiredness, weakness, numbness.

Thoughts?

[Lulu54]

I was on copaxone for over three years and had no change on my MRI's and only pseudo exacerbations thanks to chronic UTIs.It was effective for me but  I became treatment weary and my body at the injection sites wasn't linking the copaxone much any more.  My neuro suggested I switch to tysabri and I did my first infusion in February.

The copaxone injections take time to work on your MS - it is retraining your immune system to attack the copaxone rather than your myelin.  That unfortunately takes time - up to six months or so.  But hang in there, it is worth it.

Good luck and be sure to ask your questions.
Lulu

[jensequitur]

I took Copaxone for three years.  During that time, I would use a cold compress before the injection.  Often I would leave it on until the skin was completely numb, which might not have been the best idea.  I didn't massage the skin after the injection or do any of the other things that they suggested, and ended up with lipoatrophy in all my injection areas.

During those three years, I experienced several IPIRs - immediate post-injection reactions.  The first one wasn't enough to scare me off, or the several that followed - it was the allergic reaction that came along with the last IPIR that made me quit.  This was in the spring of 2011.

I don't know if I developed a sensitivity to Copaxone due to my lack of injection care.  I have less fat in the areas that were injected, and some scar tissue.  Copaxone seems to want to sit in your sub-cutaneous fat and be absorbed gradually.  So it could have made the chance of an IPIR more likely.  

The other question would be whether the drug helped me, and I honestly don't know.  It's supposed to reduce relapses, and I think even with the drug I had at least two that first year.  It was hard to tell when I was in a relapse or not, because I felt so bad most of the time.

[tomas2729]

Hello,

I am currently taking Copaxone......

I didn't notice the difference but after I started injecting the medicine, my family says I move a lot slower. The only thing that I notice with Copaxone is the injection site reaction. It does burn. Sometimes I get a welt, a lump, or some hives (all of which are normal for this drug.....). If you use an warm compress before injecting and a cold pack after it really helps. The drug company should send someone out to show you how to use it and explain all of the side effects.

I know what you mean about finally knowing something but still feeling kind of helpless. I have been there myself. It is going to take some time but the medicine will start to modify the disease. If it doesn't work, then your doctor can switch to something that does. In addition to this, there are all kinds of different treatment options that your doctor can suggest to you (i.e. fatigue meds). Some other things that help are a healthy, balanced diet and staying as active as you can.

I am really sorry that you have MS. I hope what I said helps you.......

Best,

Tom