2 week break for Copaxone
 

in my "how to you prepare for an MRI" I told the whole story of my visit to the MRI/MS center. I have been having some rough side effects from the copaxone, and we spoke to the MD about it. He was not my normal MD (who is retiring, BOO!) and he was sort of in the mind set of "MS drugs suck, but you just have to stay on them" I was not happy with that, but he was willing to compromise. He said he felt that several of my sx were simply MS, and some were issues that come from life itself, and some where from the copaxone, but he was willing to try a test with me. He gave me two weeks freedom from the Copaxone (after a stern warning that I may be throwing myself into a relapse to do it) and to keep a journal.

He said Copaxone takes about a week to wash out, and as the 2nd week approached, I would notice the most changes. If many of my issues went back to baseline or disappeared, he would be more likely to pin them on Copaxone. I told him I was tired of sweating my way through the night, and roasting like a ham in the oven. dry eyes, rashy psoriasis skin, and itchy! petichea patches, and fatigue that extends beyond anything I had before Copaxone. I am tired of the eyes so dry I dont feel I can blink. While he was a bit gruff, he did listen, and he was willing to try the experiement.

So, I have two weeks off, and will have to keep track. If at the end of two weeks, I dont see much difference, then back on C I go. If I notice dramatic, and he said it must be dramatic relief then he said we could talk about other options. If not dramatic relief or removal of other sx, then, he wants me to stay on Copaxone even if I have to suffer some side effects for it.

What are some side effects that YOU have, that you blame on taking Copaxone?

When I was on Copax, before the IPIR stuff made me have to try something else....I had to take the shot in the morning. Could not sleep at night if I took it after 5 pm. :eek:

The only place I had issues with dents was my arms, but that's because I have short ones and was very limited on where I could reach. :o

Best of luck. :hug:

I was on Rebif, felt a little icky, but not overwhelming, Insurance shipped it to me, totally without cost BUT took a week off for vacation (no frig) and being PPMS, two years taking and MRIs showing no results, doctor had no problem agreeing with me to stop totally.

Good luck, only you know the worth (pluses, minuses of drug)

Enjoy your "vacation" and I hope it helps resolve and/or pinpoints some of the issues you are having.:hug: Let us know how you do.


BTW - I am not sure why they think that a little vacation from C would cause a flair. I took a month vacation from C due to neuros nurse not submitting the paperwork to the insurance for approval. I didn't immediately go in to a flare and when I did 5 months later the neuro blamed it on the 1 month vacation.:rolleyes:

Enjoy your break. I only had bad site reactions to the C but apparently it wasn't working for me because I had more lesions after my 1-year MRI.

My biggest problem was having enough areas to inject myself. Even with rotation the areas were not healed enough by the time their turn came around again. It was frustrating.....and painful.

I had no bad side effects, except for progressing to SPMS, while on it..bahhhh!!!

Good Luck..:hug:

I had little trouble with Copaxone for the first 4 years. The 5th year, I had IPIRs very frequently. Just before I stopped, I had 2 - 3 a week. The last year I also had blood in my urine eac time they did a urine test. I went through the whole urological testing and nothing was found that could be causing it. I stopped the Copaxone and tested 6 weeks later... no blood in urine. I still test negative 9 months later. Did it cause it, who knows, but neuro agreed it was time to try something else. I now use Betaseron with no side effects unless I forget to premedicate.

Enjoy the break. I hope the 2 weeks is enough to gauge if there is a difference.

Even after just 3 days with no Copaxone, I have noticed a rash that I have had on my chest for months is about half what it was. I woke last night, and realized I was warm, but not hot, and NOT sweating! yahoo! I am not supposed to be judging any of these things till at least day 5, but I have noticed some comforts already. it makes me wonder if I will even have the courage to go back. of course, I am putting the cart before the horse, and worrying well before its time to worry. I am going to try to just sit back and enjoy the pokeless fortnight.

Sometimes the side effects are worse than the dang disease! How am I supposed to keep taking stuff that makes me feel bad? The MD says that ALL MS meds have side effects, and its a trade off to have more disability free time now, because we take the DMDs vs skipping the side effects, and landing into the SPMS or you need a wheel chair zone. its all so risky. Darned if you do, and darned if you dont.

Thanks for all the pep talks. :grouphug: