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.
OMG...Thank you for replying so quickly. I had taken it towards the inner area both times. I am hopeful it won't happen anywhere else. I like this medication. Thanks!
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.
Sending good wishes,
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.
Hope this helps.
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.
Welcome again - I hope to see you around.
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.
Nice info, Lu, plus a good viewpoint from which to consider the problem.
I wonder if we would do a service to our members to bring this up when someone tells us they are going to start Copaxone? Forewarned is definitely forearmed.
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.
Lots of hugs,
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 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.
2 cent Mary
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.