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Old 09-15-2014, 10:43 AM #1
Starznight Starznight is offline
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Default Copaxone Question

Has anyone else had bad...terrible spasms lasting for many hours, after injections? One nurse said it would take a bit for my body to decide how it would react and I shouldn't be concerned. The next nurse said she had never heard of such a thing, spams yes, but not as widespread and not as long lasting.

My first injection was fine, but it was on my left arm which is pretty messed up as far as nerves and such goes. The next shot was to my left arm, that's when it became "*^%,!|€{\!!" Owww... Was struck with, what felt like a million fire ants doused in kerosine and lit on fire chewing their way through my arm as they died, burning sensation... Within five minutes every muscle in my arm, hand, up the neck into the lower jaw and down around the back to across the front of the ribs, tightened up, knotted up and pretty much put every joint through the wringer, lasting about 6 hours till I finally went to bed and fell asleep.

So I spoke with the first nurse who basically said, different sites different reactions, the body will also learn and chill probably.... Alrighty, so the next injection was to the abdomen. Easy peasy, and with great faith the nurse was right, no reason to think....$&@@$&)'!!+*^%%++}{]]*+++#?!?????!!!!!!"

The abs locked up, the chest locked up, the back went into crazy psycho-spasms the hips locked up, I couldn't even cry or laugh through the pain because the slightest quiver to the breath was indescribable pain. But hey in only two hours I was able to fall asleep, and the next morning I'm pretty sure I was able to make out the license plate of the truck that hit me... C0PAX3???

So I called the neuro and the nurses, neuro suggested maybe half a dose and see, that when the 2nd nurse said she'd never heard of a reaction like that.... So Friday I did the half dose in the left thigh, really hoping that like the left arm all the nerve issues with my legs would save me!! Bwahahahahaha yeah right! Left leg locked up, which locked up the hip as well and since the hip was spasming and locking up the back joined in.

I actually had to pull the back brace out of retirement and strap it on this weekend while spending most of the weekend in bed flat on my back with the legs propped up, not entirely confident that the spasms had cracked, chipped or splintered one of the vertebrae since it really did feel like it had. This morning is really the first day that I'm sure it really didn't aside from just rationalizing the situation. One of those "if I didn't know better...."

Still, I don't really want to change meds. Ridiculous as that may sound, but of all possible side effects, copaxone does seem like the safest bet there is, and if this is to be the worst side effect of it, so be it, it's just pain. Sure it's intense, crippling would love to meet my maker and probably give him a few choice words while I was at it... Pain but only pain all the same. I've learned to cope for the most part, don't cry, don't scream, don't hold your breath, don't tense up, breathe in, breathe out, it'll be over when it's over and not a second sooner.

I can deal with it...I'd rather not... I'm (almost) hoping that someone else has experienced this as well and it got better for them over time. Then I can go on willy-nilly injecting myself with liquid torture, just taking comfort in the fact that one day I'll do a shot and ahh it's fine. If not then... I'll still continue to inject myself with liquid torture, though I'll be more inclined to strap on a pair of mouse ears before each injection
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Old 09-15-2014, 12:02 PM #2
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Your perseverance is commendable.

I think you're right about Copaxone as the safest of the MS drugs.

You've had 4 or 5 shots so far?

A muscle relaxant might help. Have you asked your doctor about this? When you take the muscle relaxant is probably important.

I never had this reaction when I took Copaxone but I've had severe spasms in connection with kidney stones, and I sometimes found that an antispasmodic drug (Soma or carisoprodol) helped. It's now a controlled substance and you have to be careful about taking it because it can cause dizziness.

It may be a matter of waiting it out if you can. A lot of those injection reactions are bad for a while and then go away but it could take weeks or months, unfortunately.
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Old 09-15-2014, 02:33 PM #3
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i would make the nurse come back to your house to:

1. see how you give the shot and determine if you're doing it right.
maybe you're going too deep?
2. and to make her observe first hand the reactions you're getting. just because
someone hasn't heard of something doesn't make it untrue. instead of
dismissing you they should find a way to observe, report, validate and help
you.

i was on copaxone for 10 yrs and had a few problems but not what you have.
let us know. you could also stop for a few days and see how your body is.
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Old 09-15-2014, 04:52 PM #4
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Thanks, and I am currently taking muscle relaxants as my muscles are already quite spastic, which is why I think the reaction is probably more of a snowball effect . But I take baclofen 3 times a day and then a zanaflex in the evening (still quite spastic for all that) poor muscles just don't know when to quit.

I'm going to see my pain management doctor tomorrow, and my fingers are crossed that we can figure something out. I don't particularly like taking pain meds, as far as opiates go, they seem too much like a bandaid and frankly if they're strong enough to touch the pain they're strong enough to turn off any of my controls so as soon as they wear off things feel sooo much worse as the brain has to go through and switch everything off again.

So opiates are definitely out, which makes me a bit more open to maybe an anti-depressant as a nerve treatment, or perhaps changing up the muscle relaxants just to see if there's a better mix. But honestly, I just hope against hope that this body of mine will come to see that this is for its own good and I can be just as stubborn as it is so it'll just have to take it whether it likes it or not.
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Old 09-15-2014, 05:13 PM #5
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I had no bad sides in the 10 months I was on Copaxone Could be
you're allergic to the crap.. I would stop, but that's me..
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Old 09-15-2014, 11:57 PM #6
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I learned early on that you should not inject into your arms or thighs. Even after I gained weight I still have problems in the thighs so I avoid those, and for the arms, I was quite thin and learned right away to avoid those spots.
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