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Julie  Stachowiak, Ph.D.

Copaxone Immediate Post-Injection Reaction Side Effect

By April 6, 2010

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Although I have been on Copaxone (glatiramer acetate) for my relapsing-remitting multiple sclerosis (RRMS) for almost 4 years, I have not experienced this side effect from my injections. Nor do I want to, based on what I have heard.

The "immediate post-injection reaction" happens to a minority (some estimate about 10%) of people on Copaxone at some point. Most people describe it as "feeling like a heart attack," complete with panic and anxiety, difficulty breathing and heart palpitations.

Although the manufacturer's (Teva Neuroscience) website assures Copaxone users that the reaction is "harmless," the reports from people having experienced this side effect certainly sound like emotional trauma was inflicted in some cases.

Read about this Copaxone side effect for yourself. I am a huge Copaxone fan - I am sure it has kept me from relapsing and the only side effects that I have experienced to date are some lipoatrophy and injection site irritation. However, I also think we should all know the more unpleasant aspects of any med we happen to be on, so that we can be prepared in case we are one of the unlucky ones.

Read the full article: Copaxone Immediate Post-Injection Reaction

Further reading:


Comments
April 6, 2010 at 11:06 pm
(1) Daniel K says:

Happily I too have never experienced the side effect you speak of, although I was made aware of it from the very beginning by my nurse. I’ve been using Copaxone for about 3.5 years and my injection rotation schedule is such that I don’t re-inject in the same location for 46 days which gives my skin ample time to recover. So the only side effect I have is the “bee sting” like sensation, and that lasts maybe about 10 minutes before I no longer notice it.

The trick with Copaxone is because it is a daily injection you can easily make it part of your daily routine and avoid forgetting a dose. I inject before bed which makes it less of an irritation to do so and, using the auto-injector, as routine as brushing my teeth.

And this from a guy who would often faint when giving blood or get queasy at the site of a needle, and couldn’t even conceive of ever self-injecting.

April 7, 2010 at 12:26 pm
(2) Denise says:

I had these! They were incredibly awful and lasted for 8 hours for me. Needless to say, my doctor took me off of the Copaxone after just 6 days…6 very long days! Other than that, I did not mind the daily injections, much more than I now dread my weekly Avonex.

May 19, 2011 at 7:27 am
(3) tina says:

hi you are lucky to be taken off the copaxone so how did you have to stop it as i have been on it for 4 weeks now and the hospital and doctors here dont know anything about how to stop it so please can you tell me how to stop the injection please please help me.from tina

April 7, 2010 at 12:45 pm
(4) Lisa says:

I was on Copaxone for 1 year. The first bad experience was a site reaction on my belly. It felt like a bee was stinging me. It has been 6 years and the scar is still there. THE LAST experience was my anaphlactic reaction. I was using the injector and placed it on my right hip. For some reason, the indicator was not moving. Instead of just stopping I waited and finally it was injecting. After a minute or so I began to feel dizzy. Then my heart was starting to pound. I knew something was not right. I called my ex husband and had to “run” to the bathroom. As I was talking I started to hyperventalate. I looked in the mirror and my face was as red as a tomato and my ears were huge! I hung up w/ him and called 911. After being rushed to emergency. My teeth were chattering NON STOP as if I was freezing to death. I had to put my fingers in my mouth because I kept biting my tongue. I was given intravenious steroids and benedryl. The next day my neuro called me and told me if I would have passed out @ home I would have died. So now I am on Avonex and no more site reactions, and no more feeling like I am dying. Before I would hear sirens and not think anything. But when you hear them knowing they are coming for you…I think differently.

April 7, 2010 at 12:45 pm
(5) Dolores says:

I had these reactions, not just once, but several times. Believe me, not a good experience!! Like Dr. Stachowiak, I started Copaxone when my little one was only five months old, and I didn’t have any time to feel sick with flu-like symptoms. After two years of being on Copaxone, I started having allergic reactions after giving my shots to myself: Severe itching, covered in hive like bumps, face, eyes, lips, etc., all swelling. The nurses on the Copaxone hotline were wonderful, but had never heard of this reaction, neither had my neurologist. I’m now on Betaseron, with the wonderful support system they offer in both nurses and education. I’ve had no flu-like symptoms, and most important, no MS problems, no relapses!!! Praise to God!!! Has anyone ever had the allergic reactions that I experienced on Copaxone?

November 19, 2011 at 8:20 am
(6) Stacey says:

I have been searching for anyone with my experience and finally found you! I have been on Copaxone for over a year and a half and for the last 3 months have had horrible hives and facial swelling every day! After 2 months of Prednisone with no relief ( and 10 lbs of weight gain) neither my Neuro nor my Dermo believe it is from the Copax since I’ve been on it so long. I would lovetp hear an update from you since it is now over a year and a half since your post as to whether your hives and facial swelling ever came back on the new meds?

Thanks for your story everyone keeps telling me its not the Copax but I have done everything possible to mke this itching misery go away including swithcing my laundry detergent LOL.

God Bless :)
Stacey

April 7, 2010 at 1:22 pm
(7) Marilyn says:

Dolores,
Sorry about your reaction. I had a very similar allergic reaction years ago to penicillin, and am surprised a Shared Solutions nurse said she had never heard of this. The symptoms you describe are typical of many allergic reactions. I once had a localized reaction to Copaxone and the SS nurse said as long as the hives spread no further than the size of my hand that they were okay; if on another part of the body, get help immediately.
Added note for anyone over 60 (as I am!): my neuro said if I get the Copaxone reaction, “At your age, it’s a 911 call- get to the hospital and let them tell you it was only the shot!”
Hope none of us ever get it!

April 7, 2010 at 1:26 pm
(8) Emily says:

I did two rounds of Copaxone and experienced this side effect several times. It began with the shaking, heart racing and trouble breathing. The attacks occurred only about ever 8-10 weeks, but appeared to escalate to the point that I had an anaphlactic reaction that required a 911 call and hospital stay.

It is unfortunate because the medicine was very effective at controlling the MS, but because I lived alone the reactions were just too dangerous for me to stay on the medication.

April 7, 2010 at 2:27 pm
(9) Jamie says:

I had one of these 2 months into therapy with Copaxone. Mine also turned into anaphylaxis. (I chose it for my DMD because I already have depression and didn’t want the chance to making it worse with the interferons.) I did my injection (a little early that day because I was supposed to be leaving for, of all things, an MS support group for the newly diagnosed), and as I was cleaning up my auto-injector, it hit, in waves. My chest started to immediately tighten and I felt like I was having a panic attack — short of breath, fast heartbeat, palpitations.

I knew that this had to be the post-injection reaction, so I grabbed a phone and called Shared Solutions — I know they try to talk people through it because it’s not supposed to last that long. After the first bit of panic-attack-feeling, I started having vertigo and weakness. I lost my vision completely, for several minutes. I lost my hearing completely, though only for a few seconds, but when it came back it was very diminished and the nurse sounded like a robot that was far off in the distances. I was having trouble remaining awake at this point — I just wanted to go to sleep. I’d started sweating and had soaked through my clothes. I was having difficulty breathing and difficulty speaking at this point, and the nurse decided to have another sitting near her contact my local EMS, because she could tell that at the very least, my lips were swollen because of my inability to speak. She got me to walk a few steps to the front door so I could unlock it for the paramedics.

By the time EMS got here, I was having a very difficult time staying awake (nurse had to keep saying my name quite forcefully to keep me awake) and I was having a difficult time breathing because my lips, tongue, throat were all swollen. EMS gave me epinephrine, started an IV and got in the first push of Benadryl and got me to the hospital. My sister is a 9-1-1 dispatcher, and I’d told the paramedics to radio in to her. My sister later told me that when she spoke to the paramedics, they told her, “She is going into anaphylactic shock; she is really bad. We’re leaving NOW, lights and sirens.” My sister called my parents, who came to the ER…and my Dad told me he couldn’t believe how swollen my face was; he could barely recognize me. The vision and hearing issues I had were caused because my blood pressure had dropped to extremely low levels. At the hospital, they’d given me IV fluids at a high rate to get the blood pressure back up, along with IV methylprednisolone (in a low dose) to help the swelling, along with more Benadryl. I stabilized to their satisfaction after about 6 hours and got sent home after that. Got to take Benadryl every 6 hours for 48 hours, which made me such a zombie. But at least I was alive, and I was so sure I wasn’t going to make it. Needless to say, my neurologist told me never to take Copaxone again….

I’m surprised to hear how many other people have had this reaction turn into anaphylaxis. When I talked to the safety department of Shared Solutions, they’d said they only heard of one other person who’d had anaphylaxis at that point. Anyone who’s had this reaction should contact SS and let them know, and also report it to the FDA so they can keep track of it….

April 7, 2010 at 2:46 pm
(10) E. says:

I was on Copaxone for 6 months and was getting the described above side effects not within the first 15 min., but in 8-12 hours after injection, basically next day. I guess it takes away the hypothesis that medication went to bloodstream quickly in my case. It was very frustrating when I was in the middle of doing something, talking to my kids or someone at work and the severe chest constriction would come out of the blue without any warning, followed by severe chest pain & feeling that I was dying. The anxiety usually came in the next 5-10 minutes when instead of diminishing the symptoms were escalating and the chest pain was pretty close to exceeding my treshold of tolerance (which is extr-ordinary high). Each episode had about 30 min of severe intensity (which felt like 30 hours since every second counts) followed by 30 min when symptoms gradually vanished. I would still stay on Copaxone despite of the above side effects; however, after 6 months my MRI showed the most severe MS exacerbation which I didn’t have before or after being on Copaxone.
I believe that Copaxone somehow causes severe vasoconstriction in some people which in its turn makes MS worse for some of us according to the new discoveries re: restricted blood flow & CCSVI – just my personal opinion :-) .

April 7, 2010 at 3:14 pm
(11) ljs1913 says:

Two years ago, against medical advice, I took myself off Copaxone because of this. Both my doctor and my Shared Solutions nurse made me feel like something was wrong with the way I did my injections. This article is a great relief for me and response to my doctor when he suggests I should go back on Copaxone or any of the other medications. I would rather live each moment I have, than to waste any of them recovering from medication that is supposed to prevent something from occuring in the future.

April 7, 2010 at 4:04 pm
(12) ken says:

I agree with the person who said he would live each day without the meds. i used beta- seron for three plus years and felt awful. My doctor switched me to copaxone four months ago so far so good,if i begin to get serious side effects then I will take my chances.

April 7, 2010 at 4:26 pm
(13) Amydee01 says:

I used Copaxone for about 5 years before I ever had an adverse reaction. Within a minute of my injection I experienced a metal taste in my mouth followed by my chest tightening and difficulty breathing, I could always breath, my face turned beet red and feeling like my head was going to explode. The second time it happened was probably months later, this time I knew to sit and concentrated on breathing. These episodes only seemed to last a minute. After the third time I consulted Shared Solutions and they advised me that these would probably keep happening, we all decided I should discontinue use.

April 7, 2010 at 6:59 pm
(14) Annemaree says:

I have been on Copaxone for almost two years. Could not tolerate Betaferon flu symptoms and it caused depression. I had my first IPR 3 months in. It was the first time I injected into my left arm. Yes, the heart attack feeling, shortness of breath and the feeling of a wave enveloping me was scary. I was aware of what it was but was washed out for the next two days. I didn’t leave the couch. As my partner works away I was scared. I have had two more reactions since but not as bad (thankfully).My body has large indentations from tissue/muscle deteriation from the needles. I get down that I am not feeling any better but my neuro says this MS has not progressed thankfully. I’ll keep on it. My next option is Tysabri. Not keen on that, the risks are too big for me. Hang in there everyone. Julie, you are my inspiration and role model. Best wishes.

April 7, 2010 at 7:19 pm
(15) annie says:

I was diagnosed 6 years ago with a rather severe relapse that has left me unable to walk too much. I was on Betaferon for 3 years and the depression was unbearable. I then took Tysabri for 2 years and had no further progression but found the anxiety of PML harder to live with. The last 6 months I have been on Capaxone and 1 month on LDN combined. I seem to be feeling ok on both with no side-effects at all to this point. I wish every one well on their journey to find the therapy that their body will tolerate.

April 7, 2010 at 8:45 pm
(16) Pamela says:

I’ve been on copaxone for nearly three years and have never had a problem except for a little redness at injection site. This was when I began the injections….now no reaction at all.

April 7, 2010 at 9:28 pm
(17) Pamela Hite says:

I just started Copaxone and have had a difficult time. Although, I haven’t experienced the full-fledged immediate post injection reaction, I have experienced heart palpitations, the bee stinging and the most prominent is blotches on my abdomen, back and legs. It looks like bug bites but then turns into what looks like a burn. I stopped taking the Copaxone to make sure that is what is causing this reaction (I am almost 100% sure it is). Has anyone else ever experienced this type of reaction?

I just moved to Copaxone because the Beta Seron made my extremely ill. My doctor wants me to try the Tysabri, but I am against it right now.

Any comments would be GREATLY appreciated!
Pamela Hite

April 7, 2010 at 10:26 pm
(18) Maureen says:

Has anyone experienced lymphoma when on Copaxone?

April 8, 2010 at 1:46 pm
(19) Jaimie says:

I unfortunately did experience this side effect. I had been taking Copaxone for over 6 years and all of a sudden I was experiencing (on occasion) a severe drop in body temperature and uncontrollable shivering. And then one evening I had this reaction that felt life threatening. Along with the heart palpatations, shortness of breath and difficulty breathing I experienced extreme pain in my lower back and arms. The pain was excruciating. I stopped using Copaxone immediately and about 6 months later started on Avonex. I have never experienced any side effects whatsoever with the new therapy and continue to remain sympton free. In the defense of Copaxone I must admit that I never had any side effects until that last year.

April 8, 2010 at 2:18 pm
(20) Julie says:

My husband had a severe anaphlactic reaction last night. It was the scariest thing I have ever witnessed with him. He will not be taking Copaxone again! Do people go back to it after a reaction like that?!

April 9, 2010 at 9:35 am
(21) Laura says:

I experienced this “heart attack”-like symptom several times while taking Copaxone. For me, it was happening with alarming frequency, but never so severe that I felt I had to call an ambulance – until I had been on Copaxone for a year – then I had a bad reaction and called 911. My blood pressure had shot up to 240/180 and they were convinced I was having a heart attack. When I mentioned the Copaxone and explained about the reaction, I was advised to discontinue taking the Copaxone and talk to my Neurologist. That was a Friday night.

Sunday night, I had another reaaction – and I hadn’t had an injection since the Friday! Another 911 call and trip to the hospital. They tel me my heart is fine and suggest I am having anxiety attacks (despite my explaining about the Copaxone).

For several months, I continue to get this reaction once sometimes twice a week, despite stopping the Copaxone. I go through a battery of cardiac testing and nothing is discovered.

With the help of a top MS neurologist, it is determined that while they believe the initial reactions were caused by Copaxone, they think that the continuance of them is caused by my MS – that my MS is causing changes to my autonomic nervous system. Scary!!!

I never did continue taking Copaxone. I was going to start again (once all the tests were completed) but then I heard that Novopharm (a division of TEVA) would not pay for their own employees to take Copaxone on their drug plan – if they won’t pay for their own employees to take it, I assume they know it either doesn’t work, or isn’t safe! No more Copaxone for me!!!

People should be asking Shared Solutions why they won’t cover the drug for their own employees!

April 9, 2010 at 4:52 pm
(22) Jamie says:

@Julie: After an anaphylactic reaction, no, one really probably shouldn’t go back in a medication that causes that. Of course, your husband should talk to his neurologist about the incident and whether or not he should continue on the Copaxone. My neurologist told me never to take it again after I had my anaphylaxis.

April 9, 2010 at 7:10 pm
(23) Elaine says:

I was diagnosed with MS in 1999 and started on Copaxone in January of 2000. I have been taking the injections for a little over ten years now and have never had the reaction discussed here. I have had injection site reactions, but nothing serious. I have also not had any bad relapses of my MS.

Also, Shared Solutions has a program that helps pay for the medicine for those who cannot afford it, so I don’t believe they won’t offer assistance to their own employees to help cover the cost of the medicine.

I hope these comments will not prevent newly diagnosed from at least trying Copaxone. It has certainly helped me.

April 9, 2010 at 7:25 pm
(24) Michael R says:

I had the classic immediate post-injection reaction about 1 year after starting Copaxone. Felt like I was having a heart attack. It was quite scary, but luckily, my wife was with me and remembered this side effect. Once I realized that it was the side effect and not a real heart attack, I was able to calm down, although I still felt awful for about 20 minutes.

I don’t use the auto-injector, and one thing I noticed was that on that particular injection, I got a little blood back in the syringe. The only time that has ever happened. So my theory is that I hit a blood vessel and that’s what caused the intense systemic reaction.

Anyway, I’m still using Copaxone, and hoping for the best!

April 9, 2010 at 11:38 pm
(25) Daniel K says:

With respect to the theories regarding blood on the syringe, I doubt that alone is the cause. While most of the time I don’t draw blood when self injecting, occasionally it does happen, yet I have never had a reaction from having done so. It would be a scary thought indeed if that’s all it took.

Unfortunately, as long as the cause of MS is unknown we’re probably at the mercy of taking medications that occasionally do us more harm than good. Each of us has to make the choices that work best for them and keep our fingers crossed that the treatment we choose is effective and safe. What we do know is that MS affects everyone differently so one cannot conclude that what happens to one person will happen to another, that what works for me will work for you.

Hopefully that’s only temporary and a cure is just a breakthrough discovery away.

Fingers crossed.

April 12, 2010 at 10:51 am
(26) Patrick says:

Long with many of you I have had the usual reactions of shaking, anxiety, flushing, itching. but also with a Lovely Pain reaction that follows all those. I have had the feeling of my pelvis being crushed that creeps to my sternum then goes away last about an hour. Its high range on the pain scale.
I am still on Copaxone. The reactions have been very random for me. No real pattern that I can Identify. I know it is not my injection technique, as I am also a diabetic and have been working with sup q needles for a long time. Has anyone else had the Pain reaction.

April 14, 2010 at 4:38 pm
(27) Rhonda L says:

I WILL NEVER EVER USE COPAXONE AGAIN. the side effects i had were so terrifying that it is not worth it. My face went bright red, i could not breath, my chest tightened up and felt like i was having a heart attack, the sweat starting pouring off me. pain radiated down my arms, legs, back, chest and my head. I truly honest to God thought i wass dying. I will take anything MS throws at me versus the hell Copaxone put me thru. I took it for 9 nine days and stayed in bed for 7 crying. I had been on it for 3 yrs and had quit using it for 6 months due to the fact hat i c/not afford it and copazone refused to give me ANY ASSISTANCE AT ALL. It was a joke. My dad finally bought me a one month supply. The first day i had side affects, then the third day i had side affects. Nothing scares me but these side effects did. I don’t think it is a safe drug at all.

April 17, 2010 at 4:21 pm
(28) Amy says:

OMG. I ABSOLUTELY have these reactions—only much, much worse. But…I get reactions the first night I take an MS injection treatment, any treatment. I did with Betaseron, Avonex (actually chipped a tooth from the chills), and Copaxone. Unfortunately, I have to stay on Copax b/c the usual interferons affect my liver…which is already susceptible to disease because I also have alpha-1 antitrypsin deficiency. But what is odd is….I get the reaction the first night, then after that it’s like my body just gets used to it. BUT–if I miss three days or more–I can expect HELL TO PAY for it. It’s like starting all over. Teaches me to stay on the straight and narrow!!! These reactions, omg, all I can relate it to–it must be like coming off heroine. Like severe detox. Chills, sweats, freezing cold, SEVERE pain EVERYWHERE–every inch, to where all you can do is writhe and cry and moan…this all starts at one hour after the injection. Lasts about an hour. The ONLY thing that helps AT ALL is to load up on Valium and Advil and TRY to cry myself to sleep. Is the most horrible, painful, awful experience I’ve ever had (and I’ve given birth to three children!).

April 19, 2010 at 11:53 am
(29) Liz says:

Curious does anyone realize how important it is to eat properly when having MS. I read The China Study book by T.Colin Campbell…The book disgusts how important it is to eat well & feel better.Diet is #1.. Also read the Gold Coast Diet .Very helpfull reading. Why does MS Society poo poo this?

April 21, 2010 at 1:06 pm
(30) Jen says:

I read this article with interest since I’ve been on Copaxone for 2 1/2 years. Strangely, I had my first post-injection reaction several days after I first read the article earlier this month – it was really scary. My head was pounding, my ears felt like they were on fire, and I couldn’t catch my breath. Later, I was shaking because I was so cold. It all lasted about 15-20 minutes for me. My neuro told me to stop the injections for a few days and during that time, I felt more weak and tingly than I usually do while on the medication. I found myself actually looking forward to starting the injections again! Since I’ve started again, those sensations have ceased. The experience has reminded me that although the daily injection is not fun, it’s important that I keep doing it. I’m really hoping I don’t have a repeat of the post-injection reaction, as it seems a lot of people do!

April 23, 2010 at 6:03 pm
(31) mark says:

I’ve been on Copaxone for 3 years. I’ve gone through these same reactions also, within the last 9 mo.’s or so, which last for many hours, which keeps me from sleeping, pacing back & forth & going to E.R.’s. I’m on a few drugs & started coming off of them one by one trying to pinpoint the cause, but that wasn’t the case. My doctor took me off of the Copaxone for a week & prescribed me Gabapentin & Clonazepam which works great, but I,m just wondering if I should get back on the Copaxone again or not. Any suggestions?

June 22, 2010 at 10:00 am
(32) Martin says:

I’m new to MS as just being diagnosed in Feb 2010 I just started my 2nd three month supply of Copaxone, and have had 3 post intjections reactions. All I can say is that I don’t know if I want to continue with Copaxone. One more affect I get besides feeling like I’m having a heart attact is that I get severe back spasms, and finally the chills for about an hour. This is not fun and hope all the people that have never had one, never do .

January 17, 2011 at 12:28 am
(33) Jason says:

Martin, I too get the back spasms. I just had another “heart attack” tonight. This is about the 8th one in the last 6 months. I’ve been taking Copaxone for about 14 months. I get the heart attack with the back spasms followed by the chills for a few hours. This sucks. I’m really thinking about getting off Copaxone.

July 1, 2010 at 11:21 am
(34) Karen says:

I’ve been on Copaxone going on 11 years now. For the first 10, I was absolutely consistent in taking my injections every single day. I had maybe one or two of the intense IPIRs (heart palps, face goes blood red, etc.) That was it. I have to say, it was pretty smooth sailing, and Copaxone seemed to keep the disease in check.

Last year, I stopped doing the injections regularly (reason had nothing to do with the injections). When I started back up again, yeowza. Reactions multiple times a week. I’m still struggling to get back on a regular schedule.

The worst reaction now is the shivering. About an hour and a half after injection, the palms of my hands get achy. Then I know it’s coming. About 10 minutes later, I get really cold. My house can be 85 degrees, but I’m absolutely freezing. I have to get under multiple layers of blankets. Then the actual shivering kicks in. Sometimes, it’s just sort of tremory, sometimes my limbs are really shaking. This lasts anywhere from 15 minutes to 45 minutes.

Then, within a few hours, I get uncomfortably hot. Since I do my shots at night, I’m asleep by this time, and it wakes me up. This isn’t the face-flushing reaction: I’m just hot. I kick the covers off and turn on a fan, and will feel much better.

In the morning, I’m usually a little shaky and sore (shivering is quite the muscle workout). But once I’m up and around, I feel back to normal.

I’ve noticed that if I can push past the first several nights of reactions, they stop. But if I lapse, it’s like starting over again. Recently, I’ve begun taking half doses after a lapse, working back up to a full dose, which has both reduced the number of reactions, and reduced the intensity of the ones that do occur.

These reactions are uncomfortable, but they’re not particularly scary (to me, at least). There is no swelling or difficult breathing involved. Otherwise, I’d wave goodbye to the drug that, I feel, has done me an awful lot of good. I don’t think it’s an allergy in my case, because the reactions don’t happen all the time. (And it’s definitely not because of injecting into a vein – after 10+ years of daily manual injections, I’m a pro! I rarely ever draw blood into the syringe.)

Just wanted to share these experiences. I don’t have a lot of drug options left, because the interferons cause my liver to go haywire. So, I’m trying to hang in there with Copaxone.

July 13, 2010 at 6:52 pm
(35) Rowland says:

I am in the UK. Copaxone is not really the ‘normal’ for ms sufferers here but have been taking it for the better part of 5 years. I have not had a relapse in my MS, but have suffered the post injection reaction several times, but not regularly. I have decided to continue the treatment regardless of this because I feel the good the medication does me outweighs the occasional “bad bit”

July 24, 2010 at 5:21 pm
(36) Sarah says:

The other night, I had my first IPIR. I have been on Copaxone for 7 months. I was sitting in the bathroom, and did my shot in my belly. I felt fine for about 30 seconds, then I began to get very dizzy. I yelled to my husband that I was having a reaction. By the time he reached the bathroom, about 10 seconds later, I had broken out in a horrible cold sweat and could not stop shaking. My heart was racing. The scariest part, was my throat began closing up. I told my husband to call 911. I seriously thought I was dying. I remember I kept coughing and wheezing. I caught a glimpse at myself in the bathroom mirror, and I was ghost white. When the ambulance arrived, I was able to talk and breathe. I choose not to go to the ER. I took an Ativan, and went to bed. My neurologist told me to keep him updated, and to continue with the Copaxone. I am just scared to death (literally) that I will have another reaction, but worse. If it happens again, there is NO WAY I will stay on this medication. Just thinking about it makes me anxious…

August 10, 2010 at 8:21 am
(37) Kat says:

I have been on copaxone for about 12 years. I never had any reactions ecept sometimes I would get shivering. But in the last 2 months I had 2 episodes of my bp shooting to the sky after and injection. first time 187/110, went to he ER they did nothing for me but give me xanax. 2nd time again I felt heaviness in my chest, dizziness, heart beating fast.. I dont know the highest reading because I popped a xanax asap but the last reading I got before I finaly went to sleep was 152/96.

Whats odd within the past 2 months my blood pressure spiked to 180/110 sending me to the E 2 times and going on BP medication. The other 2 spikes were not after I injected. Now I am wondering if copaxone was responsible in some way to those spikes as well.

October 7, 2010 at 10:36 pm
(38) Karen says:

I just had my 2nd IPIR… It was absolutely horrible… Both times I had heart palpitations, chest tightness, I turned beet red and felt like my head, neck, back and shoulders are on fire and as if my head is about to explode!!!
After 10-15 minutes I was able to breath better and my heart stopped racing, but when I though It was all over – surprise!!! shaking and shivering were next – and it was pretty bad… I could not even talk… My teeth were clicking badly and that lasted for another 45-50 minutes…
Eventually, I was energy-less and snoozed-off to sleep…
Both times – exactly the same symptoms…

Thus, my doc wants me to switch to another medicine, but I have no idea what to do – he said that since I already had it twice, that I will likely have that again and most chances it will get worst… :-(

Need to start new treatment now and not sure which one… None of the available medicines sounds very attractive to me at all…

November 1, 2010 at 4:32 am
(39) kiminoakland says:

well,I was one of the unlucky ones.I had the worst postinjection reaction ever,I don’t ever wanna take therapy again I thought I was dying.They say dont call 911 yeah right when you get this you pray to hear those sirens.or to just check out cause the pain in chest is so horrific,why wouldnt you call anything that stops you from breathing and tightens your heart,sweating,chills,feelin like you want to pass out,is causing some kinda damage and we should seek medical attention or they should take it off the market.I’m scared of it all don’t we suffer enough??????

November 9, 2010 at 8:18 pm
(40) Beth F says:

For all of you that state you have experienced the bee sting side effect and have noticed blotches that look like a burn, they are a burn. They are a chemical burn in fact and I unfortunately have not been so lucky that they only lasted a short time.

I have had 4 of these such reactions and am experiencing one now. The skin becomes necrotic and has to be debreaded, it is extremely painful and takes many, many months to completely heal and then leaves behind a hideous scar that you are lucky will go away in a couple of years.

My Neurologist and Shared Solutions both state that they have never heard of this from anyone else and are unable to give me an explanation. I am very seriously contemplating stopping the treatment (even after 8 successful years of use) and taking my chances as I do not know how much more I can take of this.

November 12, 2010 at 9:59 am
(41) Catherine S says:

I have been taking Copaxone since June of 2003, but not consistantly due to scary reactions. The first one was about a yr after consistant daily injections. Lips were swollen + hives. 2 years later I was dizzy with heart beating hard and short of breath. Since then I have had this and it is followed by mild stomach upset and about and hour of severe chills. Last night I got so dizzy I fell out and could only speed dial my sister. I take a Benedryl to try and avoid this, but it doesn’t always work. This occurs once or twice a year, but I’m going to talk to my Dr about the new oral medication that just got approved for MS with a 72% reduction in relapse compared to the 33% reduction with Copaxone and the interferons we have now. Not sure how fast they will get it on the shelves.

January 7, 2011 at 1:22 pm
(42) Sal says:

I have had three such reaction in the past 9 mos. Grinds your day to a halt because for the entire time you feel like youve got a hangover. The initial reaction lasts only a lil while but the effects linger.

March 7, 2011 at 12:03 pm
(43) n2research says:

I’ve had 2 IPIRs in the last two weeks and I’m trying to figure out the common factor between the two reactions. Has anyone noticed the onset of IPIRs brought on by extreme exercise/muscle fatigue? Both reaction days I spent doing strenuous aerobic exercise, skiing and then mountain biking.

March 18, 2011 at 1:23 am
(44) Darci says:

I have been on copaxone almost four months and just had the heart attack like reaction about an hour ago. Very scary-started as a wave in my abdomen and rose up. Tight chest, couldnt breath, head/face numb. Luckily my husband was with me and spoke softly to me reminding me to breath. I thougt I would pass out & felt like I was dying. Now my chest still hurts & I feel weezy. Ss was not available this time of nite. Im not sure if I can take another shot..too afraid it may happen again.

July 10, 2011 at 5:29 pm
(45) George says:

After 4 months of copaxone treatment I had my 1st reaction that wasn’t just a site reaction. 30 min.post injection I started shaking and felt unusually cold. The shaking seemed throughout my body not just my limbs. Fortunately I had no problems with breathing and no pain.Called nurse at Shared Solutions and she advised me not to take another injection until I visited with my neurologist. My neurologist informed me it “probably” won’t happen again so to start injections again. Unfortunately she did not give any advise to me on what to do if I had another reaction and if the improbable would happen might the reaction be worse. For you that have had reactions my question is if your reactions worsened each time?

August 8, 2011 at 5:34 pm
(46) Jennifer says:

I have been on copaxone for four months, and I have had two “anxiety attacks” which last for about 15 minutes. Luckily they have not been anywhere near as severe as what some of the participants on this site have experienced. I have MASSIVE injection site reactions, and although I know it could be much worse, they are so swollen that sometimes they hurt when I walk (If they are on my stomach or thighs). I was going to go off the copaxone, when I found a wonderful lotion called “soothe.” This lotion has changed my whole copaxone attitude. If you’re interested in learning more about the Soothe lotion, you can email me at jen.rodanandfields@gmail.com.

December 4, 2011 at 9:33 pm
(47) Monica says:

I have had my worst PI tonight. After my shot I had breathing difficulty. It intensified & I felt like my blood was about to pop out the top of my head. Next was spasms in the base of my back and they hit so hard I had to grit my teeth, hold onto something and squeeze. Between spasms I put my injection stuff away, but had 2-3 more while doing that. I then walked down the hall to my bedroom, having 3-4 spasms along the way. It was herder to breath laying down and didn’t help the pain so I sat back up and held onto the foot of the bed. The spasms made my whole body stiffen up like convulsing, and I made strained grunting sounds. When my husband came up the stairs he heard me & came to see what was going on & asked if he could help, but I just needed to wait till the pain passed. I took Balcofin & was able to calm down & breathe better. This all took about 15 – 20 minutes. The back spasms were the worst pain I’ve ever had. My whole spine spasmed too. After it was over, I felt better but felt like I would faint. Then the intense cold started a few minutes later & lasted another 20 minutes or so. The whole episode lasted about an hour. I was on Copaxone for 3 years but stopped taking it due to episodes I had every now and then. I then took Betaseron for a year, but got 4 brain lesions in a 5 months time. After blood tests they decided that interferons were not bonding with my cells and took me off Betaseron. He wanted me to try Tsabry or the new oral med but I don’t want to because of the threat of a brain virus or skin cancer. I told him to just put me back on Copaxone since it had been working for me & I’d rather deal with that than the other worries. Been back on for 4 months & had 3-4 reactions besides tonight. I know the Dr. will want me to take Tsabry but I don’t know if I can handle more episodes like tonight. Copaxone does work despite the episodes and skin welts, but I may have to do Tysabry.

December 16, 2011 at 8:39 pm
(48) Bonnie says:

(47) Monica, I can so relate to what you are going through. I have been having those severe painful spasms in my spine periodically after my copaxone shot. This has been going on (off and on) for about 8+ years. At first it was just a couple a year. After a few years they started in creasing 1 or 2 more a year. The took me off the Copaxone last year and put me on Avonex but after a year of that my liver enzymes were so high they took me off the Avonex and put me back on the Copaxone in May of this year. Since being back on the Copaxone I have had about 7 or 8 reactions like that. I had about 4 in a two week period recently. I am so scared I don’t know what to do. I don’t want to go on any of the other medicines. I been taking the copaxone since 1999. I complete understand how you feel. I have decided to just put my trust in God and let him work this out for me. It’s nice to know though that I am not crazy and others have experienced the same type of reactions. My Neuro for the longest just dismissed my complaints as non related to the Copaxone.

December 19, 2011 at 10:05 am
(49) Eli says:

Been on Copaxone 1day short of a year (yesterday )and had a IPIR. After injecting in my thigh,I got dizzy felt like a tight band was a round my chest and heart felt like it would explode. Called my daughter for help she said my face was red lips blue trouble with breathing very shallow a d constricted. She called SS and they called back while I now was on bathroom floor with cold washcloth on head couldn’t talkbreath swallow & the nurse is giving me breathing instructions. I send my daughter for ativan to calm down then the muscle spasms in my side and lower back start withterrible shivering I’ve not had since post delivery. After getting under many covers I slept till 10PM (it started around10:30 am. Today my chest is sore and muscles feel like I ran a Marathon.I’m afraid to. Take it again now.Don’t know what I’ll decide to do.

December 31, 2011 at 3:26 pm
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July 11, 2012 at 7:47 pm
(55) cc says:

I had the reaction today. I have been on Copaxone for about 15 months. I have never had this before. It was the worse feeling in the world. I felt like I was going to pass out, my heart was racing, my legs and arms were weak, I COULD NOT breath. It took 5 minutes to breath normally and 10 minutes before I could really get up and walk. I knew it was a possible side effect so I just tried to relax as much as possible. I took deep breaths. Actually, I started coughing uncontrollably, which I think was my bodies way of getting me oxygen. Whatever you do, don’t panic as I think that would make it worse. I hope this does not happen to you.

July 19, 2012 at 12:38 pm
(56) Danniel says:

I had my first IPIR today after 6 months on copaxon. The nurse at shared solutions told me to talk to my nuro. Its a few hours later and my chest and throat still hurt. I dont want to quit taking it. It took months for the site reactions to go away (and they did) I Feel like up in till know everything was going so well. No MS reactions. and I was able to get Insurance to cover the copaxone. Why now?

October 3, 2012 at 1:00 pm
(57) ana60 says:

I was on copaxone post injections were harsh. After each injection was in pain for hours. Tips they gave me warm the injections site and ice injections sites, after. I did that still had pain. I was on copaxone for ten days. I had three injection in stomache and one on hip . Could not sit down felt like lead pipe in stomache. I had a welt on right arm. Right leg had a welt. . It is hard to express yourself and people don’t believe how painful this was for me.I stopped taking copaxone because of this. Anyone out thier had this experience. Sorry about the bad grammar having a bad day.

November 9, 2012 at 1:09 am
(58) Lance R says:

I’ve been on Copaxone for 3 years. I had my first IPIR after only a month. The tell-tale stream of blood is present when Phase 1 begins. My head turns blood red, there is an enormous amount of pressure in my head, I have difficulty breathing, blood pressure goes through the roof, and the back spasms are some of the worst pain I’ve ever felt! I feel like someone is actively stabbing me in the lower back every time my heart beats. The only thing I can do is lie down on a cold hard tile floor (not warm carpet!), cry, scream, and wipe myself over and over with a cold wet cloth. Like a lot of others, I honestly felt like I was going to die. The official literature calmly explaining possible side effects does not do this experience justice! After 10 minutes the pain, pressure, and breathing trouble start to decrease, and another 5 minutes after that they disappear.

45 minutes later Phase 2 starts. I get cold no matter how warm or hot the house is. When my teeth start chattering to the point they are out of my control and I cannot keep my arms steady due to them shaking, I crawl into the bathtub to warm me up. After 15 minutes of soaking in hot water, the chills stop. I am still cold and need multiple blankets but at least I am no longer chattering or having tremors in my arms.

2 to 3 hours later Phase 3 starts. I get hot enough to wake up. I have to turn on a fan and aim it at me for an hour or so. Then I get back to sleep. When morning comes, all is well.

I had my second IPIR two months later, then had no problems for over a year. I had another one or two, and again all was well for yet another year. Now, I am having reactions frequently. I had 4 in the past month alone! I don’t know if my body is suddenly building up a tolerance to Copaxone, actively rejecting it, or maybe I received a bad box of 30 treatments. I am about ready to give up on Copaxone and request a different treatment if this keeps happening so frequently.

December 29, 2012 at 4:26 am
(59) Lorene says:

Diagnosed 15 years ago. Finally convinced by a neuro that I should be on a drug. I chose Copaxone. On the third day of injections my nose itched constantly, by the six day my whole body itched. Three weeks off the drug and still have an itch all over. They say it must be something other than the drug. It was the ONLY thing I had done differently and I still have no relief . Seems as though the drug company nor the doctors get that I am having a problem from this drug. Have been off of it for 3 weeks, given steroids, taken anti histamines and still itch.

January 5, 2013 at 11:11 am
(60) Reka Medgyes says:

I’ve had MS for 14 years and been on Copaxone for 7 years. I’ve had serious side effects (breathing difficulties, flushing, feeling very hot, panicking, etc.) once or twice every week. Though my Neuro has often suggested I stop and change for Avonex, I don’t dare to switch because, overall, Copaxone has done me more good than bad.
I wonder whether Teva and other medical companies have done any experiments about the exact reasons of these extremely scary side-effects and why none of them has found ways we could cope with them.
I myself make sure I do the injection in a quiet and cool room in the evening but unfortunately it’s still not enough, at least for me. :( Does anybody take any tranquillizers against these symptoms? Or have you got any suggestions?

January 16, 2013 at 8:13 pm
(61) SDgirl says:

I have been on/using copaxone for 7 months now… i’m always hot!!! I work with 10 other women in the same room and they complain about how cold it is!! I look in the mirror and my face if bright red and hot!!! help!! am i the only one who has this? I was also just diagnosed with Reynaurds Disease!!! Yea lucky meeee!!! At just 43 I’m not real happy with all this!

March 1, 2013 at 10:33 pm
(62) Jeff says:

Hi, I am 29 years old, I was diagnosed with M.S. in 2005. I have been on Copaxone for 6 months, and I just took my shot about 40 minutes ago and I experienced that terrible reaction to the shot for the first time. I felt light headed, trouble breathing, my chest hurt, and I was slightly tingly. If the nurses and the helpful people at Shared Solutions hadn’t told me about the possible reaction side effect, I would have panicked. I still almost did, but I has to just keep remembering that it would pass and that I would be fine. I am fine now and the reaction only lasted about 5 minutes. But it felt like an hour. I wouldn’t wish it on anyone and hope I never get it again.

March 16, 2013 at 4:05 am
(63) Lisa says:

I had my very first injection yesterday. I have been experiencing tingling in my tongue, electrical sensations. I have never ever had this with MS, I am 37 and was diagnosed in October 2012. Has anyone ever had weird tongue sensation, no swelling no pain just that annoying sensation that people say must but the MS but I know it’s not and it can’t be a coincidence.
I also had IV 1000mg of methyl prednisone yesterday and I am concerned if I had not had that it may be worse such as swelling of tongue.
Thank you all!
Perhaps I’m paranoid IDK!

April 7, 2013 at 1:34 pm
(64) K says:

After being on Copaxone since 2008, I recently had what I think was a reaction to it. I broke out in hives all over my body, but had no other symptoms. They started on my chest and abdomen, then my arms, then spread down and up until my entire body was covered. Only my feet and palms of my hands weren’t affected. I hadn’t started any new medications, hadn’t eaten anything new, and hadn’t been ill, so I can only assume it’s the Copaxone. I had never had problems with the Copaxone before other than site reactions – redness, occasional welts, etc. Recently I had experienced some itching at the injection site on my hips and I now wonder if that was a sign that my body was starting to develop a reaction to the med. Has this happened to anyone else?

May 3, 2013 at 4:12 pm
(65) Plant says:

I had been on Avonex for about 12 years and was having trouble with depression and the flu-like symptoms extending into the following day. My neurologist put me on Copaxone about six weeks ago. The daily shots and lovely welts were becoming part my routine when I experienced the post injection reaction of tightness in the chest and difficulty breathing. What no one mentioned was the painful muscle spasms that went with this. Ouch! I lay down a bit with the “knowledge” this would pass in about 15 minutes. After the allotted 15 minutes, and feeling a little better, I went to work.

Within two hours, I had the chills and shakes like I had never experienced before. I felt dizzy and nauseous and miserable. I felt too ill to drive, so a colleague drove me home, and we stopped a few times on the way so that I could get sick. I didn’t care if she left me in the middle of the highway, I just didn’t care about anything. I slept for eight hours and woke up feeling a lot better, but generally weak. I had some toast and then when back to bed for another 12 hours.

I will take the Avonex flu-like symptoms any day over what this was! Anyone else?

July 30, 2013 at 6:02 pm
(66) Michalina says:

I am a bit shock hearing all comments about Copaxone which I think suit everyone differently. I decided to take it because doctor told me there are no side effects apart from skin irritation and small lumps. I have been taking Copaxone for over 2 years and only now I started to have “bee stings” on my belly lasting for maximum 10min. I was told by MS Nurse dealing with Copaxone that I must to massage places after injecting myself and do not take a shower or use body lotion straight on after injecting myself. That could increase skin irritation. Morning routine suits me more as I know that Copaxone last in your body for a couple of hours and it must to be 12h difference between next injections. I have to say I had two relapses: strong weakness of my both legs lasting for at least a couple of weeks (once I had to take steroids to stop it and once I was referred to physiotherapist). Doctor wants me to swap Copaxone for Rebif but I refused as I know that my body wouldn’t cope with side effects from taking Rebif. I am aware what cause symptoms and I am trying to avoid it: flu, low mood, walking long distances, depression, etc. I am happy with Copaxone but I know that if my symptoms increase and I will not be able to cope with them than I would have to change it.

August 22, 2013 at 8:57 am
(67) Victoria Brancazio says:

I was just diagnosed with MS in May. It was quite a shock because one night I am out with my daughters and then the next morning I wake up numb! I was hospitalized for 7 days getting steroids intravenously. I have a fantastic neurologist and trust him. When we discussed my treatment, he gave me several options – most of the pills had bad side effects. Then he told me about cop axone – daily injections which have no side effects. I opted for the injections. The order was put in on July 11th. As of this date I still have not received the copaxone. There were so many problems with my insurance, the pharmacy, shared solutions and I had to make several phone calls which was very frustrating. However, after reading all the comments on this website, I am so nervous about even taking this injection. I read that mostly everyone had terrible side effects! I’ve been fine without it! I also read something that really made my decision not to take the copaxone – “I’d rather live every moment then to waste any moment recovering from medication that’s supposed to prevent something from occurring in the future”. Thank you for that – I agree with you 100%!!

October 18, 2013 at 4:08 am
(68) Elwood76 says:

Two bad reactions in three years. First was just like they said, 20 mins, tight chest and low back muscles super Spasmed. Recent one, BP shot up 180/110, and to be fair, I was also taking a nasal decongestant which may have helped aggravate. Pain in chest and right arm wouldn’t go away after 2 or 3 hours, so went to ER, they found blood enzymes 30x too high, put me on ambulance to heart specialist Mayo clinic. They found heart arteries fine, but “muscle bridging”, extra muscle grown over heart arteries, and when Copaxone caused the big muscle spasms, they clamped down on heart arteries and impeded blood flow same as plugged arteries. I will get with neurologist to see about new drug and won’t try Copaxone again. Eat healthy, ride bike every day, I take a supplement called lecithin that is supposed to help myelin and nerves. See how it goes sans Copaxone.

November 13, 2013 at 7:08 pm
(69) Laurie says:

I was diagnosed at 19 and I’m now 39 and have been on Copaxone for 14 years. I have had 12 to 14 post injection reactions and YES they r so scary. They were all the same pretty much and with the support of my Mom and Husband I would just try and take deep breaths.
However my last reaction I had at the end of September was VERY severe and I have not taken a shot since and I’m scared to death to do another shot but also scared I’m going to have a relapse:(
My reaction this time was the flushing but my husband said I was fluorescent red, my eyes and my head felt like they were going to blow up and my lower back was cramping and I had diarrhea after as well.
I have a Neuro appt on Dec 16 and I’m so distraught about what I should do.
Thx for listening and I’m wondering if anybody else stayed on Copaxone after a SEVERE reaction and if so do the reactions go back to normal or stay severe??

January 7, 2014 at 9:59 pm
(70) Tino says:

My wife has been on Copaxone since since 1998. She has the reaction with the heart palpitations, shortness of breath, racing heart etc a few times a year. We agree with the article that it seems to happen when she hits a blood vessel. It seems it happens more often when she has not gotten a massage in a while. She still likes Copaxone. If any one is planning on getting pregnant, it is the one MS drug that I heard is the safest to be on during pregnancy.

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