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#1 | ||
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Member
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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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#2 | |||
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Senior Member
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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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Repeal the law of gravity! MS diagnosed 1980. Type 2 diabetes, osteoarthritis, osteopenia. Avonex 2002-2005. Copaxone 6/4/07-5/15/10. Currently: Glatopa (generic Copaxone), 40mg 3 times/week, 12/16/20 - 3/16/24 |
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"Thanks for this!" says: | Starznight (09-16-2014) |
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#3 | |||
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Grand Magnate
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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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Judy trying to be New Skinny Butt ______________________ You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should. -------------------------------------- "DESIDERATA" by Max Ehrmann |
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"Thanks for this!" says: |
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#4 | ||
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Member
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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
![]() 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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#5 | |||
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In Remembrance
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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. ![]() ![]()
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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"Thanks for this!" says: | clarkstar (09-18-2014), Starznight (09-16-2014) |
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#6 | |||
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Elder
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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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Wiz Turn Left at the next election. . RRMS DX 01/28/03 Started Copaxone again on 12/09/09 |
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"Thanks for this!" says: |
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#7 | ||
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Member
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Thanks everyone. I just got back from pain mgmt doc who thinks along the same lines of me and neuro, it's not an allergy but rather an aggravation to existing issues. Since I'm already quite spastic the pain of the burn plus pressure of the injection is causing the muscles to ball up in protection, unfortunately the muscles haven't learned to release from their protective balling and are overly sensetive... Snowballing into the widespread intensive spasms where the protector becomes the enemy.
So we're mixing up medications again, trying to calm the existing spasms (baclofen becomes skelatin and zanaflex increases by 1 a day) and solving for pain with gabapentin to reduce the body's "protective" spasms. Hopefully, these changes will work, and not just for the injections but will benefit the day to day issues as well. If all goes well, then next month I might finally be able to undergo some PT to get this body moving better, and if need be go under the knife to fix up a few tears first. But any talk of such things has been well to the back burner in light of the spasisty, ya can't really fix what's going to be ripped to shreds within hours of surgery by spasms. One problem at a time I guess, just really getting impatient here. |
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"Thanks for this!" says: | SallyC (09-16-2014) |
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#8 | |||
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Grand Magnate
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I was on copaxone for 4 1/2 months and just could not handle the side effects anymore - baseball size welts and several immediate post injection reactions, plus a high temperature for hours whenever I had the IPIR. The IPIR sounds somewhat similar to what you experience except it lasted for about 20-25 minutes. I would typically experience a terrible taste in my mouth before the injection was even over. There would be a lot of pain plus I felt like an elephant was sitting on my chest and therefore I had trouble breathing. The pain was typically in my back and chest.
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"Thanks for this!" says: |
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#9 | |||
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Wise Elder
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Are you making sure the medicine is warm before injecting? Injecting it cold and not room temperature will cause pain. I did that once. My brother who trained plenty of MS patients how to inject their meds trained me. He forgot to mention to me the room temperature thing. I guess it was some sort of sibling torture kind of thing.
![]() Are you doing it subcutaneously? It just needs to go under the skin. Are you manually injecting or are you using the autoinjector? I found that manually injecting worked far better for me. Make sure you are not hitting a blood vessel as that can cause reactions as well. In the beginning, anytime I had a major skin reaction and pain in my legs, I was hitting a vein. Like Wiz, I stopped injecting in my thighs. I just did not have enough fat there. While I have a little more fat in my arms, I injected at a 45 degree angle. My abdomen, well, I have more fat there and it was much easier to inject in my abdomen. Because of tremors, I eventually just stuck with my abdomen and the fatty parts of my hips/back. Over time, I developed symptoms similar to Barb. I went off Copaxone and have not been on a CRAB or DMD for that matter since then. We think I am allergic to the amino acids and none of the CRABs would work for me. I hope with the new meds and changes in meds the reactions become less for you. Let us know how you are doing. ![]() |
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"Thanks for this!" says: |
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#10 | ||
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Member
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Manual injections, ensuring subcontaneous (I've played with plenty of needles on both pets, livestock and peoples in my day) and yep, room temperature only, I pull it out a few hours before.
But the good..who am I kidding.. The great, wonderful, unbelievable!!! News is, while it's only been a day since changing out the other meds I have a left hand again!!! I couldn't believe it, still can't believe it, I woke up this morning, hand was/is numb as usual but the pinky is back home, it bends, it flexes, it straightens, I can even apply pressure with it! It's still a bit weak but after over a year and a half of disuse I certainly won't complain. The new relaxants aren't just helping me cope with the pain, I actually almost feel normal again, certainly feeling BETTER! Last night was a bit strange as I started the switch since it felt like my limbs were going to fall apart as the knots began loosening, almost painful if it didn't feel sooooo good. But tonight of course is the true test, since I'll be doing another injection. But even if it hurts a bit and causes everything to tighten up again, seeing how well these new meds work... Heck I can certainly bear with it. ![]() I'm already hoping the good feelings last into next week, if so I think I just might go for a walk (with crutches or possibly pushing my chair but...) I'm just still floored by the left hand though, to think I might be able to play my clarinet again, and maybe my guitar... Piano!! How I've missed you!! Drawing, sketching, cutting, sewing... Oh man sooooo many things that have been missing from my life, to get those back again there's no amount of pain that won't be worth it. Fingers are crossed in hopes that everything will go well, and I can start PT next month and be once more my crazy bouncy self. Now if only I can wait that long since right now gosh do I feel great and longing to go for a hike, a jog, skip some rope, play some tennis, I'd even be up for a game of basketball.... Unfortunately I think if I did any of those things right now, I'd be laid up for another six months, so I really need a physical therapist to tell me "LIMITS". |
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"Thanks for this!" says: | SallyC (09-17-2014) |
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