Copaxone--imagine the beating a deadhorse icon here
 

cause I'm feeling like that dead horse! :deadhorsebeat: With the little yellow guy being the last.. and I mean THE LAST ... Copaxone shot for me.

Be warned big WHINE being unleashed....

I had a fairly good 5 year run with Copaxone. BUT.. you knew there had to be one... It beat me real good this Sunday afternoon. I have had @20 of the Immediate post injection reactions (IPIR) in the last 2 years. Each one has been a little worse than the one before.

Sunday I did my shot at 2:30pm. I knew it was going to happen before I pulled the needle out. Immediately I started feeling flushed. I called my hubby to come in because I felt faint. He grabbed an ice pack on his way back to the bedroom and immediately held it to my face, which was already red and feeling like someone was squeezing my cheeks.:mad:

With in seconds my heart rate shot up, my guts felt like someone was twisting them tight, it was becoming harder to breath and it hurt like heck to sit or lay down. All this has been "normal" for me when having an IPIR. However this time add in vomiting, diarrhea, chest pain, and extremely painful chills with in 10 minutes of the shot! :eek: Fever went up to 101 F within 30 minutes.

The chills continue for @ 30 minutes.. then I realized my heart rate was really high. I have problems with tachycardia and take meds for it. It has been under control for 10 years. I checked my pulse rate and it was 179 bpm. I thought about heading to the ER after 20 minutes of this, but it was pouring down rain (courtesy of IKE) and the winds were about 20 mph. I started all the usual manuevers to try to calm the heart... ice water on my face, leaning on the couch to put a little pressure on my heart... an hour later I finally plopped down in the recliner and it stopped. I really hate it when my heart does aerobics without the rest of my body!:o

Today I'm am so sore around my stomach, chest and ribs from the chills and vomiting. My back muscles have been in spasms all day.

SO... I officially said enough Copaxone. I had hoped it would not come to this because it was so easy most of the time. In recent months I have had issues with microscopic blood showing up in urine lab tests. I went through all matter of testing with a urologist and the only thing we can figure out is it is possibly the Copaxone causing it... it's one of the possible side affects. But this IPIR pushed me over the edge in making the decision to stop Copaxone.

Now to figure out where to go from here..... I have a neuro appointment Nov 17... he's suggesting IVIG.

Awwww, sorry 2kids2c. :hug: What a miserable experience. I surely don't blame you for throwing in the towel.

Have you checked out the LDN threads? Just click on "search" (above) and use the tag search. No shots! yippee!!! Some folks have had really good results. And it's cheap!

Sorry 2k2c, I had that once so far, scared the heck out of me the first time and imagine by now its aggravating and getting worse each time isn't safe either, did you call the med comp? to see what they had to say, even though it will be there biased answer, just wondered, because that's a lot of IPIR's for a two yr span, I hope the neuros visit gives you an answer, I don't blame you one bit for your decision I also am not all that fond of C. Hope you feel better real soon 2k2c:hugs:

Maybe you just reached your "saturation point" for Copaxone? (saturation point is what happens when the ground can no longer hold rainfall and the flooding starts)

Your body just said, "enough" and now it's time to try something else.

I've had maybe 3 or 4 reactions, usually when I somehow inject into a vein or something (I always get blood back when removing the needle...usually about 20 seconds before the reaction starts)

It's not fun...and I've only been on the C for a little less than a year.

The worst reaction I've had after a shot was when I asked my dad to give me a shot in the arm (he's a nurse) and he injected me before I could finish telling him how to do it. (s-l-o-w-l-y!!!!) He just stabbed me in the arm and zipped the C right into me within a second or two.

Boy, I made him feel guilty as hell for a day or two....but that was more painful than anything, and not as scary as having the heart start beating like crazy and wanting to hurl. But, it's the worse reaction I've had because it hurt so badly.

I don't blame you; that's my worst nightmare! I'll probably chicken out after the FIRST IPIR. I hope you and your doctor come up with something that works out for you. Keep us posted!

Wow! Sorry to hear you've had to endure all this :hug: Hope everything works out for you on something else :hug:

20 IPIRs? Wow. I'd give up too. I've had three of those things, and I could not imagine hanging in there with the drug after having 20 of them. :eek:

Hope the neuro can find something else that will work for ya. :hug:

20 IPIRs is a valid reason to toss the towel. Sorry to hear you went through so many of them and I wish you luck with your future decisions :)

That's no good, TK. Like you, I had a good run on it for 6 years, but quit it about 1.5 years ago. I'm SP now, but, less convinced than ever about C (at least for me). I've had virtually no notable changes since I quit it.

Hello all, I thought I was alone in this kind of reaction. After 2 great years I had this happen but I guess I'm a slow learner or just stupid as I waited a week and shot again, same reaction but still thought it would get better. I shot 4 times a week apart each time with the same reaction before I threw in the towel.

Now it's 7 months on Ty and am waiting for this one to give me my life back.

BTW I love reading here as this board is so supportive of each other.

I experienced 5 IPIR's that sound similar to yours in the 4 1/2 months I was on it, and then both I and my neuro threw in the towel. I also experienced the cold chills and shaking after all the other heart/shortness of breath/flushing ... symptoms were over and they lasted for about 2 hours each time. I can't believe you hung in after having 20 of these. Wow! My neuro has suggested imuran as a possibility, but right now I am just having a MRI every six months to check progression. I feel so much better now than one year ago when I was on copaxone.

aww you poor kitten. 20 is just too many! :hug:

I hope you are feeling better soon.

I completely understand! I quit it after 11 mos, 2 weeks because of the frequency and increasing severity of the IPIRs. I HATE that drug!

I take 15mg of Methotrexate every week now. Pills...no more shots. They did nothing and I progressed steadily through all the treatments. No slowdowns for me..... :(

You WILL feel better without that crummy drug! :)

I feel like such a weenie! I threw in the towel a month ago because of IPIRs that I had been having. Mine are different and didn't affect my breathing or heart but were very painful in my back, neck and head. After the last one where I couldn't walk for about 5 minutes because of the excruciating pain I said NO MORE!

My neuro surprised me and talked me into trying Avonex before trying Tysabri. So nurse should be here next week to show me how to do the IM shot. Wonderful, not!

I hope you find something else that works for you.

Having never experienced an IPIR, I do think that those who experience them frequently are making the right decision by either choosing another drug option or going natural/drug free.

Best to all of you :grouphug: