Copaxone Heart Attack Symptom!

Alright everyone, tonight for the 1st time I just had the dreaded Copaxone heart attack thing. OMG!!!!  I have NEVER felt like this in my life!!!! So scary!!! I injected in the top left of my left leg. Immediately afterwards I started to get a burning in my chest and up my neck and face. Then my entire body became tingly and my throat felt like it was closing off. I started feeling like I was going to hyper-ventilate.  Thank goodness I had already read about this happening before. I yelled to my partner who was sitting right there next to me on the couch. I said, "It's happening!!" She looked at me confused. I said I feel like I'm having a heart attack!!!   Still right now I'm shaking all over. At first my face was bright red, now I'm really pale.

I called Shared Solutions and they're gone for the rest of the night and until MONDAY morning. Ahhh!! That's great, I hope this shakiness goes away soon.

-Kelly

[Lulu54]

So sorry you have experienced this.  there is a nurse on call with SS 24/7 - call that number again and talk to the nurse if you need to speak with a medical person.  They should be in tomorrow - Friday and you can call them during their regular hours then.

Also, be sure to call your neurologist tomorrow and let them know what happened and if they want you to continue the copaxone or switch you to something else.

the good news is they say once this has happened it very rarely happens a second time.  

As we always say, knowledge is power and you were in control because you knew about this possible side effect.

[kelly97]

Hi, Yeah, I just tried them for the 4th time. It still says the same thing. They are closed and will not open until Mon March 28th. What the heck - like you said, there's always supposed to be someone available. They must be having a problem or something. After it says the message, it hangs up on me. :-(

I hope this doesn't happen again. And I hope they don't want to take me off of it. I'd rather stay on it and take my chances I think.

Thanks  - yeah, very scary! I'm glad it's over, but I feel drained now.

-Kelly

[kelly97]

Oh, and tomorrow is my 6 month anniversary of starting to take Copaxone.

[JemmAus]

You poor thing....I wonder if you feel drained from the adrenalin coming down ( I expect it was right up when the horror was occurring!) or from what your body has gone through from the drug....you're braver than me - I haven't started and DMDs at all - much too chicken !

Here's hoping it never happens again.

[essdipity]

Shared Solutions will do a lot of 'handholding' but otherwise is pretty useless. I urge you to call your neuro instead, and don't do anymore shots until you've discussed it with him or her.

Good luck,
ess

[supermum_ms]

Ooooh doesn't sound 'fun' at all, i was thinking similar to ess's but calling the hospital and finding out if they want you to come in to monitor. Uggg not something you'd want to go through again, but I totally agree, 'rather be on it and take my chances'. Make sure you do tell your neuro/nurse before taking another shot!

HUGS............JJ

[sllowe]

Oh no, Kell. Such a scary experience. How long you figure it lasted?

-Shell
p.s. Shame on SS for not having someone available.

[kelly97]

It was not fun at all. I called and left a message this morning for the clinical nurse coordinator for my MS neuro. I told her I was just calling to report it, but didn't want to go off the Copaxone. She'll probably call me back later on today.

Last night I was this close (imagine me squishing my 2 fingers almost together) from calling 911. It only lasted about 5 minutes, then the shakiness lasted maybe about an hour afterwards. 5 minutes seemed like an eternity last night....

Thanks,
Kelly

[rendean]

Kelly,

So sorry you had to experience that reaction. BTW, just because the package insert says it will only last 5 - 15 minutes, never hesitate to call 911 if you feel so awful. It's not totally impossible to have a heart attack,no matter what your age is.

I'm glad it was only those 5 long minutes. I certainly would clear it with someone with your neuro 's office like you have before continuing. Glad you're better!

Ren

[kelly97]

I wonder is it an allergic reaction to it? Can Copaxone actually cause a heart attack?
I HOPE NOT!!

-Kelly

[twopack]

Wow Kelly!  I can still hear the shakiness in your voice.  I'm so glad your partner was right there.  It seems you did the exact right thing - didn't panic, sat up, controlled your breathing, monitored how long it lasted and notified the doc's office this morning.  

I'm with the others.  Wait until you get the ok from your doc to restart your injections.  I know this is the weekend, but you would be better off missing a dose (or even two) than going ahead without clearance.

As an FYI, just before I started Copaxone, I began to have some cardiac type symptoms.  The cardiologist wanted to evaluate those symptoms before I took the first injection.  He was NOT afraid the Copaxone would damage my heart.  He didn't want to chance a drug side effect/reaction that might cloud my baseline symptoms before they were evaluated.  He actually mentioned that if Copaxone helped control the MS it might, in turn, decrease the symptoms I was having.

I'm interested, did you actually have trouble breathing or did the feeling your throat was closing make you think you might not get enough air?  I know -- you weren't a calm observer at that moment!  

I ask because I've had a few times recently when I felt like my neck was full(?) and something inside was pressing on my trachea and esophagus.  It was uncomfortable but not fear or panic inducing so I was able to step back and look at what was happening.  I could actually breathe and swallow without any trouble, especially if I avoided letting my chin flex toward my chest.  But I've also had times when I had no feeling of obstruction yet couldn't seem to take a deep enough breath.  Apparently, the two things aren't always related.  Of course, call 911 if there's doubt about getting air!

As serious as this topic is, I must confess I had to chuckle a little.  Here's the picture...
You are escalating into controlled panic over something always possible yet never really expected (maybe still with the syringe in your hand?)...
Taking that moment to tell your partner she may have to take over...
Looking so good on the outside as your insides betray you...
So she looks at you like, "This is what?"
Doesn't that remind you a little bit of the loving yet sometimes clueless husband of a woman full term pregnant who has just announced it's time to go to the hospital?

I mean NO disrespect and apologize if no one else sees humor here.  I know it isn't the type of thing that is at all humorous in the moment.  Some things just develop into a fun story later.  Sometimes my mind takes off in strange directions.  It did even before MS was an issue.

So maybe it would be a good idea for us all to run IPIR drills with our housemates?  We could teach them to grab our focus, make sure we are sitting up with full torso extension, reassure us that they will help us through, lead us in controlled breathing techniques, make note of how long the IPIR is lasting and call 911 or the doc when necessary.  (Gee, that almost sounds like childbirth classes.  I think I'm stuck in this image.)  It sounds like a good idea except I'd have to wake the other boarder here before I could get his help.  (sigh)

Glad you're better now and ready to go forward.
Mary

[cainer]

man i hate to hear that , its very scarey i done it 2 or 3 times  almost was gun shy!! but  as long as someone is with me i shoot myself.  ya dont know why, but in a few min. i was fine- i havent stopped, and am fine!  maybe take anxiety pill first? i do it helps  hugs! tick

[twopack]

Duh, today is Friday on this side of the world isn't it?  I guess I'd better check my calendar to see if I'm supposed to be someplace besides here.

Jemm, I guess bravery is all in the personal perspective.  For me, taking Copaxone means increased confidence that I'll remain functional despite having MS.  It seems more like faith than bravery.  

I have never had an IPIR but I think, like Kelly, I would want to continue the therapy even if I did.  I'm not brave enough to let MS be the only thing with decision making power concerning what happens to my CNS.  The blockade a DMD erects may not be perfect but (for me) the potential IPIR is far less risky than rampant demyelination.  Just a different way of living it.

Mary

[kelly97]

Oh, yes, I'm happy to entertain everyone!  Now that it's over....   :-)

hahaha, yeah, I can see the comparisons that you made, Mary. Very funny!  Yep, I looked at her with severe panic in my eyes, and she got up and went running to find the Shared Solutions phone number on the frig. Then came back and told me to try to control my breathing and slow it down (yeah, right!!! that wasn't going to happen anytime soon!) (the breathing is yet another comparison possibly to a woman who is pregnant. :-))

My heart was racing & flip-flopping everywhere, I felt disoriented, and I think I was going into a serious panic attack or something. With my heart and everything feeling like it did, it felt like I couldn't breath normal, at all, even if I tried.

I think I may be a little leery about injecting again without someone there with me. I did feel like I may pass out at any moment.  

The neuro office called me back. They said I get one free heart attack like symptom without them worrying too much. So, now I've had my freebie. (Yay, for me!)  She said, if it happens again, then they'll see if they want to change anything or talk to me about it.

[Lulu54]

Thanks for the followup confirmation from the neuro.  The one time deal is what I have read, too.  Strange that they can't quite figure out what it is.

As for calling 911, never hesitate to call if you suspect heart issues - time is muscle.  I talked this over with my neuro and came up with a 15 minute limit if I have this problem (which I did have a mild episode of IPIR last summer - fortunately  it lasted less than 10 minutes.

I carry nitroglycerin, thanks to my previous heart attack, and the neuro and I agreed if I have chest pains, I would pop a nitro and wait a few minutes.  If pain continues after 5 minutes I would take another nitro.  If it continues after the second nitro tab, I would then call 911.  All sorts of other things can go wrong with us while we are focused on this MiSerable disease.

be better, Lu

[jensequitur]

Hey, I've had experience with the IPIR as well.  I'm going to disagree with Lulu on this one - I had six IPIRs total before I stopped taking Copaxone.  Instead of going away, they started happening more and more frequently, and becoming more intense.  The last one I had was similar to an allergic reaction - my skin swelled, and started to really itch.  So much so that I had to sit on my hands so I wouldn't scratch.  I scratched my scalp so much that my ears swelled up and looked funny!  So I figured that the worry of having another IPIR was keeping me from taking the drug.  I switched to Betaseron and now have no problem with injections.

The good news is that the IPIR is uncomfortable, but not life threatening.  The SS people will tell you that by the time the ambulance arrives, the reaction will be done.  I would say if there's anything that happens that wasn't in this reaction - chest pains, like Lulu mentioned, or an allergic reaction that seems to cause severe swelling, then call 911.

I think part of my problem was that the areas I was injecting were becoming scarred, and there was less fat to inject into.  I have a lot of lipoatrophy in my thighs, hips, and stomach.  There's a lot more attention paid right now to massaging the area after injection - it will help prevent that.

[kelly97]

Do you think it's possible to have a heart issue right after an injection - that's really a heart issue, instead of something related to the Copaxone injection?

I'm wondering if the IPIR is worse with people who are smaller? I weigh just over a hundred lbs, but I take the same amount of Copaxone as, for instance, someone who might weigh, 200 lbs.  

Uh-ho Jen, I think you just made my heart start to race a little thinking about my injection tonight.  I hope I don't become a multiple offender. Once was sure enough for me!    

[jensequitur]

I'm pretty sure that the reaction isn't heart related.  So if you do have a racing heartrate, it could be any number of factors - anxiety, orthostatic hypotension...  even lesions in the brainstem will cause problems with your autonomic system.

But rest assured that the injection will not hurt your heart!  I can understand where you're coming from, though - the anxiety associated with the injection was one of the reasons why I switched.

Now the IPIR is more likely if you're injecting in an area that doesn't have enough subcutaneous fat.  If you're a skinny little thing, and it sounds like you are, then there are  fewer fatty areas for you to inject into.  One thing you can do is to adjust your injection depth.  Skinny people probably can reduce the needle depth on their autoject to a 4 instead of the standard 10.  I would talk to the SS people about that.

[jensequitur]

Hey, here's an article that has a bit more information on it:

http://ms.about.com/od/treatments/a/copaxone_IPIR.htm

[kelly97]

That's interesting about the brainstem lesion causing autonomic dysfunction. I've had a few problems with my heart going haywire.  I had to wear a heart rate monitor because my heart just decides to start racing every now and then for no apparent reason - it's like it's not regulated properly.  They can't figure out what is causing it.  They just told me that I need to start working out slowly - then I tell them that I'm not working out when it's happening. (Sometimes they're not too smart.... )

I think maybe that's one possibility that they've never thought about. I might bring that up to my neuro when I see him on 8 April. I've never told him about it, because I had no idea that it would ever be related to something like that.

Thanks!
Kelly  

[twopack]

I haven't seen any reliable information to make me believe an IPIR can be linked to injecting into a blood vessel.  I have had small amounts of blood return from time to time.  I had a virtual lava flow once.  No IPIR.

I'm also not sure what difference smaller amounts of subcutaneous fat would make.  Yes, you need to adjust the injection depth but even slender people should be able to absorb the single ml dose of Copaxone as long as sites are rotated and deposits are massaged out after 24 hours.  

If you inject too deep, it goes into muscle.  It will probably ache more afterwards and the drug will absorb faster than it does in subcutaneous tissue but I doubt that would trigger an IPIR.  Few people need to use a setting of 10 on the autoinjector.  Some people can for some sites.  It is seldom necessary.

Kelly, of course it is possible to have a heart problem develop at any time.  I don't think that timing would happen very often.  I'm sure it's even less likely if you have no previous history of cardiac problems.  Symptoms that need attention aren't likely to disappear within a few minutes.

I have no idea what determines how severe an IPIR will be.  I do know that 20mg is the standard dose and not related to size or weight.  A few drugs have dosages based on body weight.  Many (probably most) have standard dosages that are valid for the majority of adults, regardless of size.  (Pediatrics is a whole different world!)  The action is based more on metabolism.  I think there are some studies being done with half dose or alternate day dosing of Copaxone but that is probable not IPIR related.

Relax and assume that injection world will be back to business as usual tonight.  You have talked to the doc and received his reassurance and blessing to continue.  They would have told you if they anticipated back to back performances.  I'm not surprised you are on edge for the first injection after an IPIR but you need to get right back on that bucking bronco.  Tomorrow will be easier.

Let us know how it goes.
Mary

[jensequitur]

I have the same problem.  My PCP has prescribed something to make the heart go slower - we'll see how it works!

[Lulu54]

Wow, Jen.  I didn't realize this has happened to you six times.  I am shocked that your doctor didn't take you off the copaxone after it happened the second time or that you would be willing to keep going through that.  

The literature on this uncommon reaction was pretty clear that it isn't usually a repeat problem; that makes me wonder if your reaction wasn't caused by something else?  

I've read Julie Stachoiwak's take on the IPIR - she clearly states there is no data on this other than what is reported on forums such as this one and her information that she uses is purely anecdotal.  Too bad SS can't duplicate this problem in studies.   It appears she has yet to have this IPIR because she notes she would write a follow up on her post if it happened to her.  That was over a year ago.  

MS world has an interesting thread on this subject where a nurse suggests that the reaction could be a vasovagal episode, with the patient reacting to the procedure, the sight of blood,  or even the anxiety of doing the injection.  

Kelly - check in and let us know how you did today with the copaxone, ok?  Inquiring minds want to know.
be well, L  

[Starryeyes2]

Hi Kelly-
I have been taking copaxone for a yr and a half and have had at least 10 reactions since starting it. My neuro keeps telling me that its ok and they don't know why it happens to some, not others. I think it is hitting some sort of vessel. I don't inject legs, arms anymore. I do hips, flank area on the back, and tummy.
I hate the reaction. I always end up crying. I was getting welts the size of my entire hand on my arms. I took benedryl afterward. I really hope that I can continue on this. I hate the thought of liver checks and flu symptoms.
I wish you luck that you won't get anymore reactions.
We're here with you!
Hugs from me!!
Kristi

[essdipity]

I'm really pragmatic. Whatever works, and what works for you won't necessarily be helpful to me.

However, I would not continue any med that had me crying every day. Life is way too short. I was on Copaxone a couple of months, and ultimately realized I was allergic to it and getting worse. Horrible itching, hives, lumps, welts, rashes. The neuro said this would not improve. So I said this would not continue! Just couldn't stand it another second.

I had never had an IPIR reaction to Copaxone. One might have been enough--two certainly would have been. Especially since the nurse had said that these happened very randomly. Because I hadn't had one in X amount of time said nothing about whether I'd get one, or more.

So I switched to Avonex. Almost no flu-like probs when I did the shot at bedtime, accompanied by 2 Aleve. Having liver function tests a few times a year isn't a big deal. I have to have other blood tests anyway.

So, as the saying goes, I'm Jus' Sayin. Find what works for you. It's out there.

ess

[kelly97]

You can knock me down, but I'll just get back up again. :-)
I'm still taking my injections. I never skipped a day.

The 1st day after it happened I was just really nervous and making myself sick to my stomach thinking about injecting again.

After I injected that next night after the IPIR, without a mishap, I'm not nervous anymore.

Thanks everyone for your input, I really do appreciate it.
-Kelly

[RazCarver]

Glad you haven't had any more problems Kelly. that sounded bad and scary.  -Raz

[kelly97]

Thanks Raz. I hope it will stay like that, too...

[jensequitur]

Hey, Lulu!

Yes, I had six IPIRs before I quit Copaxone completely.  I'm pretty sure it was Copaxone that was causing the problem.  Every time it happened, it was right after an injection.  The last one was an injection into my stomach, which is a little scarred already from lipoatrophy.  The injection went very slowly, and as the autoject finally went all the way in, I could feel my chest tightening up.  Hard to explain, but I knew immediately that something was wrong.  I yelled to my husband that I was having a reaction, and laid down on the couch and tried to relax.  The weird part was the extreme itching all over my body - that had never happened before with an IPIR.  

I really do think that injection in anything but subcutaneous fat will cause a problem.  Or maybe I'm just one of the susceptible ones.

One of the reasons I continued with the injections is that my neuro said it would be okay, and so did SS.  But that neuro has made several wrong choices in the course of my treatment.  The one thing I like about his office is that they've worked very hard to make sure I have a DMD and that I have financial assistance for it.  I've learned that I have to be proactive with those guys - do my own research and ask for what I want.  Right now I'm seeing an MS specialist, and she's much more on top of things.  It's nice to know that your neuro is smarter than you are!

[kelly97]

Hi Jen and everyone, I just wanted to say that my first reaction was to lay down, too. However, according to Shared Solutions, you should never lay down during it. I think it's supposedly better for your breathing if you sit-up in an upright position.
This is just in case someone reads this, and ends up having an IPIR of their own....

Thanks,
Kelly  

[katie4242]

Oh no!  I thought I was almost out of the woods.  I started my Copaxone in November and figured that since it hadn't happened that it probably wouldn't.  My neuro said that the chances of an IPIR go down as time goes on.  Then again, he looks and sounds exactly like D. Cheney so I don't really trust him.  (Hee, hee, hope no one is offended - he really does look just like him).

[Lulu54]

@Katie - as long as you don't go hunting with your neuro you should at least be safe.  

@jen -I'm glad you got a better doc because I can't imagine any ms specialist letting you go through that many IPIR's.  y'ou're unfortunately right about many people here being smarter than their doctors when it comes to understanding MS.

[kelly97]

Hi Katie,
I think I read that if it's going to happen, then it typically happens within the first few months to year of taking Copaxone.
hahahahaha - your neuro sounds scary...   :-)

[jensequitur]

Maybe it's an old guy thing - my PCP looks a little like Cheney too, but I like him just fine.  Personally I think you're right - that if you haven't had one, then you might be one of the people who don't get 'em.  It took about six months before my first one.

[JuxtMick17]

I started taking copaxon last year when I was 16 and my throat closing up was just half of my symptoms shortly after it closed up I had the chills like severe chills I was shaking sooo much I couldn't stop I turned the heat on nd it was really hot but I was still so cold I end up waking up so sweaty nd burning up I didn't like the feeling so I stop taking the medicine for a while and I end up having lots of pains in my spine or just sharp pains all over I just started back taking it.          

[Lulu54]

HI JuxtMick- I see you are new here.  I hope you will take the time to start a new thread and introduce yourself and your connection with MS.  I hope to see you around, Lulu