i have been on this for over a month and have had 1 IPIR and i thought i was going to die as noone even warned me about there even being a possabillity of it happening. i have not been able to eat a bite of siolid food since last sundays superbowl and only a few bits and it was days before that. i have completley lost my appetite since i have been on it and have been drinking ensures just to stay alive. I want to get on something else. I want to stop the capaxone but i dont want my spasms to come back :(
Is there a way we can post pictures on this site? I have been on Copaxone for years (more than 9 i tkink) and have gone through all the side effects from it. The feeling of heart attack loss of breath was not fun that was unlock the front door and get my alarm button off the wall to put on coffee table while praying. This was years ago and i was only maybe 35, and the crazy nurse was "of course this is a side effect" that was not cool thing to say to me at the time. shew got an earfull from me, i think i made her cry...lol
Now i need to know if anyone has had the blood explosion under the skin at the injection site. This freakin hurts and happened to me once before and I thought I was going through something from the X-Files happening to my thigh. It was weird as i watched in about 30 secounds the blood under my skin explode with blood under the skin, my entire top of thigh was bright red blood under the skin burning and turning hard. end result was giant blisster that scared about 4 inches by 4 inches. this happened 3 years ago and now it has happened again 2 days ago. The nurse i called then didn't what happened so i think they still wouldn't know.
I don't wanna scare anyone but the side effects do happen and we just keep going and going...lol But just wondering if this has happened to anyone else. can we put pics on here for anyone who wants to see what this looks like.
If the IPIR is harmless, as Teva claims, then you'd think they would deliberately induce it in a test group hooked up to an ECG so they could check heart activity. Heck, put that tracer ink in Copaxone that they use to check for blockages, inject it into a blood vessel, then do an angiogram.
I dunno, maybe they already have - but you'd think that those studies would be easier to find if they have been done.
Speaking personally, the one IPIR that I had left me feeling a little dizzy and nauseous. I called in sick that day and went to bed.
My adverse reaction lasted, in my mind, about 20-25 minutes. I was extremely anxious during the episode, so from the time the reaction started, until I could catch my breath and calm down was several minutes longer.
As I told my Cardiologist, after my Neuro sent me to be checked, "I was very anxious and panicky." This was probably more pronouced for me, since my father-in-law died from a heart attack. He was only 49 and I was 55, when my reaction happened.
After the reaction was over, it was OVER. It came immediately after I started injecting the medication. I had no lingering side effects. It did not damage my heart, as I was checked out by my Cardiologist. I only was sent to a Cardio because my adverse reaction happened a year and a half into therapy, which my Neuro said is rare. I am also a lady of higher risk for an actual heart attack. Age, menopausal, overweight, diabetes, high blood pressure and high cholesterol AND I smoke.
I was alone when it happened and I believe that caused alot of anxiety, also. I am still very anxious about it happening again, I will admit.
Since I just had an MRI, I can report that there were no new lesions in my brain and no change in their size. I believe that Copaxone DOES work. Before the Copaxone, I was showing changes of new lesions on every MRI.
All the DMD's come with side effects. I don't know of any medication on the market, that doesn't have side effects. Correct? The adverse reaction I experienced with Copaxone, was just that...a side effect. My heart is fine and I am fine. All forum members starting on Copxone or just a few months into Copaxone...remember, there is power in knowledge. As long as you know that it can happen, but is still quite rare, you should continue on your course of Copaxone. Copaxone does do it's job, just as the other DMD's do. Each person experiences things differently....
Heather
I've done a great deal of reading on what I can find on the IPIR and I've not heard anything about it lasting longer than 15-20 minutes, nor about it having any lingering side effects that go on for days. I would really take that info with a HUGE grain of salt, especially if it came off a forum. If someone said that their reaction lasted that long or they felt somehow different for a couple days afterward, I would be a little skeptical. When stressed people have a sense of telescoping time. During a crisis a person will estimate that something lasted half an hour when it was only several minutes.
Personal anecdote alert!: When I was training, it came time for me to intubate a newborn on my own in a crisis. Of course I had my resident there, in case I failed. they handed me a baby in distress with meconium. I had to wipe the slimy stuff away from its mouth and then pass the tube between the vocal cords to suck out any meconium that might have been pulled into the trachea. If it as aspirated deep into the lungs it causes a terrible chemical pneumonia. You have to do all of this before the baby takes it's first breath.
Well, I was struggling, the baby is moving around and I had a few false starts. the time was passing and this baby was not gotten any air. I motioned for the resident to take over and he refused. He told me to keep trying. I was becoming angry with him as much as I was worrying about how long I was keeping this infant from breathing. I finally got the tube in correctly and we sucked out the trachea.
Afterwards, out in the hall, I let my resident have it! I yelled at him not to ever, EVER risk a child's life on my education! I was almost in tears with fury. He grinned at me and held up a stop watch, "Relax, it only took you 33 seconds." Yep, when we are in crisis, time seems to stand still.
*****End anecdote
Conversely I would like to see any real studies that were done documenting the reaction with an ECG. It happens so rarely. Is Shared Solutions saying that they had people come in daily until the reaction happened so they could monitor it? It would take huge numbers of people to be injected daily at a medical facility for a long time to catch enough ECG's to verify this.
Perhaps someone could see if they could find any real data on both the length of the reaction plus lingering side effects (which I have never heard of) and the data that shows the ECG is normal.
Now, I have heard from several people that an ECG done emergently, shortly after the reaction, showed no changes, but that would be different and is not data that SS could give out as scientific. After the reaction shows that it has not caused a lingering problem, but you would want the data "during" the reaction. Am I correct Lulu?
Quix
I bleed with about half of the shots. Some bleed more than others. I've had the reaction twice about two or three months into starting it, and never again. For me, it wasn't as bad as what was described in the literature, but I sure was anxious when giving myself a shot after the last IPIR. I felt my ears burning and my face become flush. It felt like my head was going to explode. My heart felt like is was pounding, but no more than it usually does when I get overheated. When I looked in the mirror, my face was bright red. This sounds horrible, but it wasn't all that bad for me because I wasn't in a panic. I called out to my husband, who had me sit down. He had me breathe in and out really slowly, and the whole thing passed within about 15 minutes. I wasn't all that scared because I knew what was happening was an IPIR--thanks to my husband keeping me level-headed.
Even after having experienced this and being on Copaxone for close to two years, I would never switch to an interferon unless Copaxone stopped working for me. I would not like flu-like side effects, and being prone to migraines, I'm convinced I'd have more migraines while on an interferon. My sister had an increase in headaches while on Rebif. I would do almost anything to not have migraines in addition to having MS symptoms. For me, Copaxone has been the absolutely best thing to help hault the MS. However, each people react differently to DMDs. Some do terrible on Copaxone, and some do terrible on the interferons (and I must add that each of these drugs are different, too).
If you're new to Copaxone, I would suggest having someone with you for the first several months when doing the injections (or at least have someone in the house). That way if you do get an IPIR, you're not as likely to panic. Just make sure that they person will stay calm! LOL Nothing would be worse than having that person panic, too.
I have been following this discussion because I have had 3 reactions in 6 weeks. I called SS and the nurse didn't seem like she knew what she was talking about. She reassured me that many studies were done on people taking the Copaxone and EKG's being done while the person experienced the reaction. The first 2 times my reaction came after using auto-inject in the thigh. I had another less severe (still scary) reaction last week after injecting into the back of my arm. I literally feel like its "Russian Roullette" every time I inject. I am not too fond of switching only because of the flu-like side effects and the liver checks.
I completely understand the hesitancy in starting this.
There's a lot of different opinions on why Copaxone acts that way when it enters the bloodstream. Is it injuring the heart? I don't know. But it was definitely uncomfortable. I have no idea whether it would cause a heart attack, but why risk it?
Where did I find this? I found my information from another MS resource on the net - Brain Talk communities' MS forum. Like everything else on the internet, of course you have to take it with a grain of salt.
http:// brain.hastypastry.net/forums/showthread.php?t=26197
And I meant to add (but brain-farted) that sometimes I bleed from the autoject. Not a lot - just a pinprick of blood - but it's there. Most worrisome is when I inject in an area that doesn't bleed at all. My abdomen is like that - so knotted with scar tissue that there wasn't a lot of blood there.
I think now if I had to choose again, I would pick Betaseron. Mostly because my abdomen and thighs are so dented and lumpy from the Copaxone - and it's permanent. I might have been able to put up with the flu-like symptoms. Right now I'm not taking Copaxone because of the cost - and things don't look good for the immediate future financially speaking. I'm thinking about going back to the neuro and asking for a prescription for Betaseron instead, when I finally do get my finances in order.
OOOPPPPS! please excuse my error..
In the 3rd paragraph at the end of it it should read.......Serious HEART issues!
NOT....serious HEAT issues which would make no sense at all (duh).
~Tonya
Hello, While I of course am not Lulu, I would like to jump in here if that is ok.
I am by no means an expert or doctor.....Nor do I play one on TV! BUT!......The facts are straight foreward in the literature that you get from Teva. Of course they underplay some of the really bad possible side affects.
I also have Tachycardia, was dx w/ Innapropriate Sinus Tachycardia several months ago through Tilt Table Test and take Digoxin for that to try and keep it in some kind of a normal sinus rhthym. The Electro - Cardio doc says that this is an Anatomical Dysfunstion (dysautonomia) often seen in peopls w/ MS.
I guess all I can say to you for words of advice or wisdom or whatever you want to call it, is that as with any medications, their are side affects. Some worse than others. With Copaxone, there is that ever dreaded cardiac affect that could happen. I am sure that your Cardio and Neuro knows of your past heart issues? From what I understand Jo, is that it is just that...a side affect of the medication. Could it through you into a "REAL" serious heat issue?????? Who knows?
Sorry I could not have been better help but that what I know about this! I too think that just the thought of it being a possibility is quite S.C.A.R.R.Y! I did however pick this DMD because of not having to worry about regular monitoring of liver enzymes and other stuff. Now I think to myself........is it worth the trade off? I guess your Damned if you do and Damned if you don't in this crazy DMD, MS, world!
Be well. I hope that you find some comfort in your decision to take the Copxone. If not....then in no wat do you have to stay w/ that one. You could always switch.
Take Care,
~Tonya
Hi, Jo. Not Lulu, but maybe can help you here.
I'm thinking you might want to try one of the interferons rather than Copaxone. Not that they're better, but the worry factor has to be considered. Sorting out what might be causing what can be a big worry, so why take it on when other DMDs are out there.
One thing we don't need is more stress. Please talk this over with your neuro.
ess
I am supposed to begin Copaxone injections soon, but all of this discussion really concerns me. I have had two heart attacks and double bypass surgery and although all of that was way back in the early 90's and the doctors say I have a very strong heart, non-smoker and non-drinker and not overweight or anything--still, the cardiologist has noted some ischemia with my heart. I still have tachycardic episodes occasionally--one not two months ago. I definitely do not want anything that causes my heart to have problems or causes reactions that are linked to my heart. Can you address this concern, Lulu? Thanks so much! jo
I'M ALMOST DONE WITH MY 2ND MONTH OF COPAXONE & REALLY STILL HOPING I GET TO LULU'S POINT OF GETTING USED TO IT. THIS IS ALL INTERESTING, GUESS THATS THE WORD, SINCE I HAVE THE JOYING OF EXPERIENCING ABOUT EVERY SIDE-EFFECT OF THE INJ (I HAVE PROBS WITH JUST ABOUT ALL MEDS THOUGH IN 1 WAY OR ANOTHER?)
I'M STILL TERRIFIED OF SHOTS SO I USE THE AUTO-INJ ALL THE TIME, BUT I ALWAYS SWITCH INJ SITES, CHECK FOR WHERE MY OLD LUMPS & BRUISES ARE, AND EVERYOTHER 'TIP' I CAN FIND...
KNOW I HAVE TO DO IT BUT HATING IT THE WHOLE WAY. I JUST CANT FIGURE OUT WHAT PART IS THE WORST... GOOD LUCK TO EVERBODY DEALING WITH THIS STUFF!!! LIVE, LAUGH, LOVE
MELANIE
I have had a the heart racing reaction only twice and I've been on Copaxone for 7 months now. I have no idea how I injected those 2 times that led to the heart symptoms but since it happened early on after starting the drug, it was probably a technique error in my case. It is a scary feeling though and I can't imagine it happening so frequently. Yuck!
SS told me to look for capillaries in the skin and try to avoid them. Hitting them causes bleeding and will result in a bruise - though sometimes not. Like Lu, I see bleeding after injections at least 3-4 times a week, but it is the bruising that I really could do without.
So far so good as far as lumps. I tend to manual inject in my tummy more than I should so I will heed your advice on taking care not to overdo in the same places.
Thanks for posting this Jersey, it was very informative.
Julie
Thanks, Tonya, for explaining that seeing blood is not an indication of pending IPIR. I probably have drops of blood present 4 out of 7 nights week
I have been on copaxone for 16 months now and have not yet had this dreaded side effect of *heart attack symptoms* As most of you know that is something I would not mess with, having already had a real heart attack.
I rarely even get discomfort at my injection sites any more. My body is accustomed to this daily assault of a needle and drugs and seems to no longer mind it.
Jensequitir - this all makes interesting reading - can you give us the source for all that is written here? I'm with you about the autoinject pen - I'm not sure about doing it with the syringe and pushing the plunger :-)
be well,
Lulu
Just wanted to chime in on this post as a fellow Copaxone user :)
First off, sorry if you are having the post injection problems involving the chest discomfort and all.
Secondly, Just curious as to where you got the info on the pulling up on the
syringe and looking for blood and all that? It sounds if one is doing that,
and you are pulling the needle in and out depending if you see blood or not, could
pose a problem and be an irritant in and of itself.
It is not unususl to see a dot of blood when giving a subcutaneous (sp) injection
as there are small blood vessels within the skin itself. If you have ever had a TB test done, when the needle goes just barely beneath the skin to inject the liquid, it is not
uncommon to get a dot of blood from the injection, even though it is sub cutaneous.
With all that being said, having the post injection reaction that you are describing
is just one of the many possibilities that can happen w/ the copaxone. There is a bubble in the pre-filled syringe that is supposed to stay there. Despite what was taught in nursing or medical school and how there should be no bubbles in the syringe, that is why
they flick the syringe and even perhaps push a bit out before infecting. Is your bubble staying in the syringe?
From what I know and have been taught and told about the Copaxone, if you are self injecting, (if in thigh) pull w/ one hand a nice piece of fatty tissue, then w/ the other hand,
go ahead and inject pushing needle straight in ( not at an angle) and then pull the needle straight up and out. and if you see a dot of blood, it is ok. It does not mean that you went straight into the blood stream as I think you were describing.
Hope I made some kind of sense. I guess, in a nutshell, the side effects of Copaxone
are what they are and really has nothing to do with seeing dots of blood or not. One of the CRAPPY things about having MS and trying to treat / stabalize it.
Be Well,
~Tonya
You know, I have a similar problem, but mine is from the injection site reaction. The flesh is so sore that it makes my whole arm hurt.
I injected in my arm last night. I ended up with incredible pain shooting down my arm. It was like hitting your elbow pain. It lasted hours. The pain goes all the way into my fingers. This has happened three times now. It hurt to move my arm. I threw frozen vegetables on the site and then a heating pad. Nothing stopped the pain.
I would not call SS if my head fell off. The nurses have to read from a script.
Alex