Copaxone Reaction

[starryeyes1]

I'm wondering if anyone else has had reactions to Copaxone? I have been taking it for over 5 months and one night after taking it in the thigh, I experienced the tightness of the chest, difficulty breathing, and my face turned bright red and felt like it was going to split apart. My DR said to reduce it to 1/2 a shot the next night and I didn't have another problem for 3 more weeks when it happened again. Coincidently, both times it occured when the injection was in the thigh .I am worried I won't be able to continue this if it keeps happening. I don't want to switch. Any suggestions? I don't inject into my legs now to see if it makes a difference.

[starryeyes1]

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.

[jensequitur]

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.

[Qrtrmoon]

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.  

[Deb61]

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,
Deb

[Qrtrmoon]

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?

[Heather3418]

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.

Heather