I'm wondering if anyone else has had reactions to Copaxone? I have been taking it for over 5 months and one night after taking it in the thigh, I experienced the tightness of the chest, difficulty breathing, and my face turned bright red and felt like it was going to split apart. My DR said to reduce it to 1/2 a shot the next night and I didn't have another problem for 3 more weeks when it happened again. Coincidently, both times it occured when the injection was in the thigh .I am worried I won't be able to continue this if it keeps happening. I don't want to switch. Any suggestions? I don't inject into my legs now to see if it makes a difference.
Hey, it sounds like you're hitting a vein or artery. The reaction you describe is called a vagus reaction. Pay very close attention to the injection site map they give you for Copaxone. When they say the top of the thigh, they mean it! Always inject into the fat areas and never into an area that might have a blood vessel.
I decided to stray from the top of the thigh and went a little inside, and had the same exact reaction you're talking about. Felt awful for the rest of the day.
Hi, Starryeyes. This sounds to me like a problem that happens randomly with Copaxone. People describe it as feeling like a heartg attack is taking place, and it's a very scary thing.
Have you checked the Copaxone web site? You'll find reference to this, downplaying it, of course. It can occur even after years of Copaxone use, and may never happen again. I really don't think the injection site has anything to do with it.
You might want to call Shared Solutions, and also let your neuro know about this. Actually it isn't dangerous, but you need reassurance.
Hi, and welcome to the forum from me. ess is correct. What you have had is called the Immediate post-injection reaction. They know all about it and assure us that it is not serious. However, the company downplays the reaction and I don't think everyone is told about it's possibility. That is just a little less than ethical I think. Besides, if people knew about it before hand, many wouldn't freak and quit the meds and refuse others (as some have).
The reaction is most likely to occur after the first few months of taking Copaxone. About 13% of users will have it occur. It is usually just once, but may recur. As far as I know it is not injection-site specific, but may be related to injecting into an small blood vessel. It is not just a vaso-vagal reaction that one thinks of causing near-fainting.
The reaction can be quite frightening and consists of flushing and feeling hot, brief difficulty breathing, heart pounding, chest pressure, severe anxiety and such that it can feel like a heart attack. It's typically lasts less than 15 minutes. I have not read anything about it that says you should stop the med if it recurs. Some neurologists have stopped the med because of it, but it is unclear why except for patient fear.
If you look into the patient pamphlet you can read about it. If you weren't educated about its possibility, I would complain to Teva and Shared Solutions. People should be advised about it, and there would be less anxiety over it.
Hi and welcome. Your post caught my attention - and Ess and Quix took care of the important stuff in their answers to you. I know all of the printed material that comes with the copaxone patient education things includes the warning about the physical reaction that some have with copaxone.
I am also on copaxone, and you are the first person I have heard of being told to take a half dose. That's an interesting approach to this problem.
Heather, a long time member here, had this chest tightness, could it be a heart attack, reaction this spring and her neuro immediately took her off copaxone and put her through a battery of cardio tests. She was off a dmd for three months or so if I am remembering the timing, waiting to find out if it was safe to take.
If you continue to have this problem, you could always switch to a different DMD.
Like Lulu, this post also caught my attention.
I just had a follow up neuro appt and he too told me that even after months of taking
the Copaxone injections, the side effect that you described is still a very
real possibility even though it had not happened yet.
That scarred the (beep) out of me. That is the sx that I feared the most!!!!
I thought that if it had not happened yet, that it would not. Well he enlightened me
by saying that it still could very well happen. If I remember right, I think he
told me that like 25-30% of his patients on Copaxone have this happen.
He just wanted to fore- warn me.
I hope that it will not happen to you anymore, but.......it may. I think that you should probably call both your Neuro and Teva just to give them a heads up! Escpecially since it had happened more than once.
Tonya - thanks for adding what your neuro told you. The Copaxone site is where I got the 13% figure. Can't say I would be surprised if they downplayed the incidence of the reaction. But, also remember it only lasts about 15 minutes. If you are really worried you can call Shared Solutions or even 911 if you wanted to feel safe.
Personally, it does sound so much like a heart attack, that I wonder exactly what it is. I wonder if it is something like the chemical, adenosine, that they use for a cardiac stress test instead of the treadmill.
My neuro talked to me quite a bit about this before I started on Copaxone because I have had a heart attack.
He asked me what I would do if I had this reaction and I told him I would take a nitroglycerin tab and wait five minutes. He then asked what I would do if the pain continued. I told him I would then take another nitro tab if needed and wait another 5 minutes.
Both of those actions are standard procedure outlined to me from my cardiologist.
Of course he asked what I would do then if it still went on I said I would then call 911.
He was then satisfied. His big concern is that I not overreact, but also that I not ignore what might possibly be a heart problem.
He also said most copaxone users have never been medically observed with this problem, because by the time you decide to call 911 and actually get medical attention, the event has resolved on its own.
It is a dilemma, because we know time is muscle when it comes to heart problems - I think the key here is having these pains immediately after the copaxone injection. I have not heard of it happening at any other time.
I have gotten a Copaxone reaction almost exactly how you described it about three months after I started the medicine. My heart was pounding and my face turned beet red. My head felt like it was about to explode. Then I had another reaction a short time later.
My neuro told me to inject my medicine at an angle when injecting in my legs--exactly where I was injecting when the reaction occurred. I have little fat on the tops of my legs, so I inject higher on the fatty areas of my legs now. I haven't had a reaction since.
I have been on Copaxone for one week now, and I did read in the literature that this was a possible side affect but they made it sound more like it could happen after the first dose rather than months from now. I thought I was fine since it didn't happen after the first couple of doses, now I am going to be scared every time I do a shot after reading this.
I started out on Beta Seron years ago then switched to Rebif about 4 years ago and just finally had all I could stand of the side affects so I just quit them altogether. Finally when I moved to Texas a few months ago new Neuro convinced me to try Copaxone due to NO SIDE AFFECTS. Now I read this! Very funny doc! No side affects just a heart attack!
Hi my name is Heather and I had one of the dreaded 'reactions" to Copaxone on June 22, 2009. I had been taking Copaxone for about a year and a half, when one day, I went to inject in my lower abdomen, where there is plenty of fat. (trust me on this one)
As I pulled the needle out, I immediately felt like an elephant was sitting on my chest and I couldn't seem to take a full breath. I was pouring in sweat and was sure that I was having a heart attack. I was severely nauseated and starved for air. I had pain and numbness going down my left arm, also. The pressure on my chest was unbelieveable.
I was alone at the time, but did not call 911. I knew that this was the dreaded side effect, but when the "attack" continued beyond 15 minutes I was really afraid with my high blood pressure history and diabetes, that it was indeed a "heart" event.
When I "recovered," I was exhausted and quite scared. I felt like I had just run a marathon. I called my Neuro's office and she told me not to take anymore Copaxone, until she set me up with a cardiologist. She said that because I was in my mid-fifties with alot medical history that could lend to a heart attack, she wanted to be sure all was well with my heart. She said that because I had already been on Copaxone for so long, it was rare to see this event occur. It usually happens in the early stages of using Copaxone, IF it's going to happen.
Shared Solutions, down plays this adverse reaction. I think it could be extremely dangerous in someone that has severe heart disease. Too bad I wasn't at a medical facility when it happened, because I would have loved to know if my blood pressure shot up or my heart rate. I personally think that my blood pressure went very low. I had felt very faint.
I had a full work-up with a cardiologist and was found to have a very high cholesterol count, high blood glucose level and my weight was up 25 pounds, since the year before. I really do believe that I was lucky that I did NOT have a cardiac event, with the other problems I had lurking in the background.
I have only taken a few injections of Copaxone since that event. What happened to me, scared me so much, that I am just too anxious to take a chance of it happening again. I have been diagnosed with MS for 14 years and have failed the other DMD's, so Copaxone was all that was left for me. Truth be told, I would rather take my chances with NO DMD, than to go through that event again. It scared me that much. Yes, I am truly a chicken....
By the way, I DID hit a small capillary when the dreaded reaction occurred. There was a drop of blood at the injection site when I was finished with the shot. Shared Solutions even agrees, that they believe that this reaction is more apt to happen if the medication hit's a capillary or artery. They didn't say why, of course, but assured me they doubted that I would have another reaction again. They are not the ones injecting themselves, so they were of little comfort to me.
Copaxone is a good medicine, as are the Interferon's. It's your personal choice if you continue with the drug. I really feel that since your reaction happened early in your therapy, that you won't have a reaction like that again. It is a scary event, but I have not heard of anyone dying from this event. I did a lot of research after my "event."
Best of luck to you and believe me, I totally understand how you felt.
I know that these drugs are all we have, but I listen to the tests and the results say things like 20% reduction in relapses over a 5 year period, and those numbers seem so insignificant to me compared to what we put ourselves through, with the injections and the side effects and the problems associated with these meds. I hear the drug companies preach of the silent damage that we May or May not know the drugs are controlling. I also know what kind of money they are making off of each injection we do. Every drug I have used so far Beta/Rebif and now Copaxone has made claims about how much better it is than the others at controlling relapses in their own blind studies. And I know I have No guarantees, it is all about taking chances. Do I feel lucky? Then my quality of life comes into play. Which is the reason I stopped the Rebif. I decided I would rather have a few years with only the problems the MS was giving me than more years with the added problems Rebif was giving me. Now I start stressing every evening 2 hours before time for my Copaxone injection knowing how badly it is going to burn, worrying about heart problems from it, etc. The added hassle of having to do the injection, clean up the mess afterward. Bumps, bruises band-aids all over my body. Is it really worth it?? Am I just fooling myself or being deceived by the drug companies that want to get rich off my disease?
The burning with Copaxone does diminish after a while. I never get a bump anymore at the injection site, which used to be about the size of a baseball (no exageration).
I do think that it is worth it. For me, it has been better than a 33% reduction in relapse. With several years of symptoms, I had a doctor's prescription for a wheelchair about three to four months after starting Copaxone; however, things drastically improved about nine to ten months of being on the drug. I'm not even close to needing a wheelchair anymore and can walk around fine. I still have problems, but I am no where near where I was before. I know that Copaxone isn't supposed to improve things, but for me I have to chalk up my improvement from the drug. I had lots of problems for years before the drug, and now (especially the mobility), I'm much better.
I have had attacks in the 1 year and 10 months since being on Copaxone, but they don't seem as severe as they were before. The most significant attacks have been with my vision and TN. I still have a lot of residual symptoms from previous attacks which are probably permament; however, I have had lesions that were on my MRI seem to disappear. I know for sure it was Copaxone because I've been a negative spiral downward for years until nine months into treatment.
Please don't stop taking DMDs until you do lots and lots thinking, research, and talking with others (especially your neuro) about this. DMDs aren't for everyone, but the decision not to take them should not be done lightly, as this is the only viable option for people with MS right now.
Thanks for the kind words Deb. I have been at this a very long time and never do anything without a lot of research and thought. I have spent a lot of years giving these drugs thought. I have cut out a lot of the drugs over the years. If I took everything the docs had put me on I would be a vegetable sitting in the corner drooling on myself. The neuro puts me on a drug that causes a side effect then the GP puts me on something else for the side effect of that drug which causes another side effect then they put me on something else to counter that side effect...etc etc...pretty soon I have difficulty knowing if I should wake up or just stay in bed. Every few months I have to re-evaluate all the meds they have me on and cut out everything except just what I really need to take. I have learned the B/P meds, Topomax (topamax) and the Baclofen and the thyroid meds are a must the Neurontin I can toy with and my pain med I try to only take when I just cannot take the pain any more. My anti depression meds I have fortunately been able to almost cut completely out in the past year due to a reduction in almost all my stress. The rest of the meds they throw at me I consider dispensable. If I try them and I don't like the side effects or they don't seem to be working then goodbye.
Hey, folks, the vagus reaction that I mentioned is a narrowing of the blood vessels caused by injecting Copaxone into the blood, rather than into a fat area. It's quite easy to do. This causes all the problems we've had with Copaxone - the sweating, the inability to breathe, the feeling like an elephant is sitting on your chest. For me, it felt like I was a balloon that somebody was blowing up.
Hi everyone and thanks for all the insight. I took my injection in the back of my arm last night and had another reaction. This time it was a lot less intense as the other 2 times.I get this burning feeling in my stomach, nausea, then difficulty breathing and intense heat on my ears and neck.
It lasted for a few minutes then went away. I did let my neuro know and am waiting to hear what he says. I don't want to change to the other dmd's due to the side effects. All 3 episodes have happened in the span of 1 month.
Not sure if stress has anything to do with it. I am in the process of putting my house up for sale (staging etc) my husband has been deployed to Iraq since before I was dx. I have severe balance problems so walking around is tough. I will ask if that has any bearing.
Also, I use the auto-injecter which I prefer so I am not sure if I can turn it at an angle or not.
Sorry for the all caps, but I would NOT turn the injector - if you are injecting into a blood vessel, it's more likely to happen if you inject sideways.
How deep are you injecting? Try the shallowest setting on your injector, and see if it happens again.
I would find the area on your body with the most subcutaneous fat, and try it there. The chart shows the tops of the thighs, the backs of the arms, and two small circles on the lower abdomen. Problem is, after a year of injecting, I've got two large dents, one on either side of my belly button. It looks weird. So I've started injecting into the fat above my belly button, at about the level of the floating ribs. There's two blobs there, one on each side.
And if it happens again, I would stop - there's no point in putting up with that severe of a reaction.
My goodness, you really are a trooper! I would probably have given up on it. Is there any way you can inject manually? It sounds like you may be injecting into the bloodstream, and you have more control injecting manually and avoiding muscle or injecting too shallow. Try in a place where you have the most fat, like Jen suggested. For me it's my stomach! If you inject manually, don't push the needle in slowly, make sure the area is heated, and the alcohol is completely dry (it will sting really badly if it's not). I use a blow dryer to warm and dry the area. Some people don't use the alcohol pads and inject after they've taken a shower.
I know what it's like to dread shot time. I had both of the reactions within a few day time frame, and I really, really didn't want to ever inject again. Now, when I do it, it's like taking my oral medicines, and I never think about it.
I hope it works out for you, but you can't put up with having severe reactions time after time. Best of wishes, Deb
Whups! I was way wrong about the vagus reaction - for one thing, it's vagal, not vagus, and another thing, it couldn't possibly be a vagal reaction, as that's the opposite of the problem. So my Shared Solutions nurse was wrong.
Just a quick comment - my experience with the post-injection reaction is the same as what is described here, although the reaction I have lasts closer to 40 minutes from start to finish & leaves me "wiped out" for the rest of the day.
I had my first reaction of this kind after about 3 months on Copaxone, and had read about it, so it wasn't as frightening. I now get the reactions several times a year, and they seem worse than when I started the medication (6 years ago), and scarier, because I never know when it will happen.
Recently, I had two of the reactions in one week. My neuro has taken me off the med until my next appt (about 4 weeks). I don't want to go on any other med, but I don't want the surprises, either. I'm enjoying taking a break from Copaxone & the fear of a reaction, in the meantime...
Potential long term functional limitations of MS still concern me more than the potential for a short lived side effect of Copaxone. But I have never had this immediate post injection reaction. I'm sure it is both very uncomfortable and very scarry. I could change my mind if it happened. I consider almost nothing to be an absolute anymore, especially concerning my health.
It's not at all uncommon to see a drop of blood at the site after injection. Sometimes, it can be avoided by waiting a few seconds longer before withdrawing the needle (yes, you just hold it there).
After one injection I had done in my thigh, there was an unusual amount of blood flow out of the tiny injection site. Rut roh! This was surly disaster headed my way. I waited for the dreaded IPIR to hit. Nothing. Like so many aspects of MS, there doesn't seem to be much clarity for what happens from one case to another.
The center, upper thigh works best for me too. If I stray to the recommended area's borders, I do it toward the outside of the thigh. The closer you move to the inner thigh, the more likely you will encounter an increasing concentration of blood vessels and nerve endings (if you think about it, the reasons are obvious).
A few months ago I though I would start a site rotation that included only one thigh injection a week. That way, either thigh would be injected only once every two weeks. Before I could start the plan, I had a "perfect" thigh injection experience. No pain, no sting, no big lump, I'm not sure what happened. Not every shot is that perfect (yet) but most are much better. I don't know what has happened or why. I just accept and rejoice.
Lastly, I did have the start of my Copaxone use delayed by a cardiologist. He may have been initially unsure of the reaction itself. Once he researched Copaxone, he was more concerned that the reactions could muddy the diagnostic waters of some similar cardiac symptoms I was having at the time. After two weeks, he told me to go ahead and take it.
I have been on copaxone for 6 months and had the same reaction last week, but I began vomiting and breaking out in hives only at the injection sites (all of the injection sites), I also had just took the injection in my leg (right on the top). my doc told me to take a Benadryl and not to take the injection the next day and then take 1/2 the day after that. He also said that this is normal for the first six months and that it means it's in my system and beginning to work….we’ll see about that when I take new test in March.
I have been on Copaxone for 18 month's and have already had 3 post injection reaction's..My neuro did tell me about them so I knew that there was a possibility they could happen and didn't freak out too much...
I have found that when I do my injection's in my stomach was when I had my reaction's but I also noticed blood as I pulled the needle out each time so must of hit a vein or blood vessel and maybe it could be the shock of Copaxone going straight into the blood stream..
I am still happy to take Copaxone as I know it is doing what it is supposed to do for me.
My reactions lasted for 10-15min each time but my body felt really drained for an hour or so later..
Yes my husband called the Neuro on the spot (love that he gives his cell to his patients so we can call anytime) he told him about the vomiting and hives….the hives weren’t the normal ones I get right after I take the injection, this one small ones all over my arms, legs, stomach, lower back all at the same time..wish I had taken a picture so I could see all the exact locations I have previously taken the shot.
Hey, Missy - I've stopped taking Copaxone because the last IPIR I had was more of an allergic reaction than the previous ones. I started itching all over, and my face got puffy and red. I switched to Betaseron and haven't had any serious problems since.
I've been on Copaxone for about 3-4 months now. Besides the typical swelling/soreness at the needle site, I have been very happy w/ the med (no relapses since). However, last night I had my first IPIR and it was awful.
I knew something was wrong immediately. My wife actually gave me the injection on my right hip/buttock with an autoinjector. I laid on my bed (face down) and felt tightness in my diaphram/chest. I got up and told my wife, "something isn't right." I walked over to our bathroom mirror and I was bright red and my left leg started to spasm. I laid down (face down again) on the floor. My wife was dialing 911 (which I thought was a great idea at the time).
About 5-8 minutes later (still lying on the floor, face down) the fire and paramedics arrived. By that time I felt a lot better but was still not feeling well. I declined a trip to the ER but did so w/ a blood pressure of 180/100 (kind of scary because I'm a 130/80 guy).
I know I freaked out my wife and kids (and their friends) but am happy the incident didn't last too long (probably 30 min tops because of the paramedics getting involved).
As much as it sounds crazy, it's nice to know I'm not on an island and I appreciate everyone's previous comments (I wish I read the blog beforehand). My neurologist has instructed me not to take further doses until I meet with him...right now I'm on the fence on if I want continue with the Copaxone or try something else.
One last thought. I really think that there is some merit to the Copaxone being injected into the blood stream via veinous transmission. I'm pretty sure that was the case last night.
I am using copaxone for eight months but never has any reaction, but last night was terrible when I put the injection in my left arm I felt pain in my stomach, breath problems and all my body was sleep. I am so scare.
I just started using Copaxone. I had my third Copaxone injection today. I used the AutoJect 2 in my abdomen on a setting of 5. I was left with a dime sized pink area that disappeared after about an hour or so. It doesn't seem that bad at all. It's like a very tiny little bee stung me and that sting was only around a couple of minutes or so. I'm very happy with my reaction to Copaxone so far.
My first injection was in my right arm. I had a bump there and still have a minor bruise from that. I'm assuming I hit the muscle. Anyway, I'm glad I chose Copaxone.
post injection trama is what I heard it called, and I had it twice in the year I have been on it and it was in my thigh both times when I had it. I actually have bad varicose veins and have to go more inside my thigh (don't worry pleanty of fat on my thighs...lol) so it actually works better for me. everyone is different. just have to try to see what works.
I have been on it over a year and had it happen twice. But I just felt flushed and felt like I was gonna pass out...then I got all tense and had to lay down....it is a scarey feeling, but if you know it is just a reaction, and you know it wont last it isn't as bad
I have been on Copaxone for 7 months now. No i have not had the "panic attack" side affect which seems to vary alot in intensity (thank heavens I read everything you have all written so I will be prepaired) I did however break out in the oddest rash for WEEKS after I started. it was not itchy but it looked awful and it was all over (icky thing to go through in the summer!) I still get itchy occasionally at the injection sites if I do not go deep enough so I have had to play with the auto inject a lot to get just the right depth.
I did read an article in the newspaper on a gal here in WI who is on Copaxone early on in my diagnosis and in the article they actually mentioned the nasty reactions (which I though was awesome of that writter) the MS gal said her biggest trick was do do some relaxation exercises (yoga and meditation) before giving the shot and doing the shot a bed time. I followed suit and so far so good (knock on wood :-) )
3 years and two negative reactions that are anything but fun. First one did go away in 20 mins, the worst was terrible spasms in the "love handles" along with chest pain. Recent one put me in hospital. To be fair, I was also taking pseudo-ephedrine sp ? For fall allergies and plugged nose, which may elevate BP. Soon after injection came pain in chest and right arm. Couldn't get comfortable in any position. Lasted several hours, got ambulance ride to cardiac center as heart attack blood "Trop" enzymes were 30X too high. BP was 180/110. Ugh. Turns out I have good coronary arteries, but "bridging" of extra muscle over the arteries. When the Copaxone caused the nasty muscle spasms, those excess muscles over the heart arteries clamped down on them, shutting off blood flow to heart same as a traditional heart attack from plugged arteries !! I am in mid-fifties. You cannot pay me to try another shot of Copaxone after two bad reactions and an actual myocardial infarction. I will check out that pill that 3 years ago I recall had "1/1000 chance of fatal brain infection". Maybe there is newer info on that one, I'd love to get away from shots. I'm going to try a second opinion neurologist, too. My symptoms are not many and 3 years of MRIs have not changed lesions, but Copaxone may have helped that !! Good Lord, who knows. Biking every single day has helped leg strength much and balance, too. Eating more healthy and I take lecithin supplement which is supposed to help myelin and nerve function, at least allegedly. Good lord, who really knows ??
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