copaxone scare

[bluemanda]

Hi-
I have been taking copaxone since May of last year. I never had a problem besides a little swelling, redness, and sometimes itchy after. All very liveable.

Saturday night within ten seconds of giving my shot I turned red from head to toe. My face swelled. My heart raced, and it felt like I couldn't breathe.

I got hives (like a bunch of bug bites) and my back hurt really bad.

After the heart slowed down, the redness and hives went away, and the swelling went down I got violently sick to my stomach and diarraha.

Then the chills started, teeth chattering chills and no matter what I did I couldn't get warm. I had two blankets and a heating pad and parts shook I didn't know I had. This lasted about a good hour or more.

I had been trying to doze because I was so tired. I woke suddenly and realized the shivering stopped suddenly. I went to sleep, about fifteen minutes later I woke just as suddenly.

I had thrown up in mouth, scary since I was asleep and on my back, I grabbed my just in case bowl and just in time since another wave hit me. Then I had to rush to the bathroom and for the other end.

As I was in the bathroom and stood I almost fell down from being dizzy and weak. I had to sit down. I couldn't even sit up straight without wanting to fall over from being dizzy and weak.

My boyfriend wound up bringing me a blanket and I just sort of slid to the floor where I laid for an hour. After that time I felt able to make it to bed.

At this time I did go to sleep and slept for about eight hours.

I seem ok now, just sore all over. My chest especially and in my back where I think I strained something getting sick.

I didn't take the shot Sunday, but was told to go ahead tonight. I am kind of scared but I feel I have done so well on this med.

Has anyone else had anything similar to this? Did you continue? Does it happen often.

Thank you to everyone taking the time to read my story.

[Faey]

not EXACTLY like that but i did start having problems after 10 months of use.

like you, everything was normal, red lumps, itching...normal stuff. then one day i got the panic like side effect. i got hot, dizzy, chest pain, short of breath. once it wore off i also got diarrhea but that was probably from the severe anxiety i had from the reaction. i wasn't too worried because it sounded just like i had read that the panic like side effect would feel like.

i had the same reaction the next day. being an idiot, i took it a third night before FINALLY calling shared solutions, who told me to stop the med until i talked to my dr. my dr at the time (who might also be an idiot) told me to try it one more time. the last time my breathing got really shallow and i was passing out from exhaustion and waking up with a start the whole night following. unfortunately, i can't take copaxone anymore.

so, not exactly the same but similar. please just make sure that you talk to your dr or shared solutions! before you take another injection. I'm assuming that you did because you said you were told to try again.

i know it's scary to take the med again once you've had a fright. one of the things that helped me a lot was just knowing that it might happen and having a plan on what i was going to do...like staying calm if it was a "normal" side effect vs. calling 911 if i passed out (well, my husband).

If you are scared, call shared solutions and talk to one of their nurses. they just love talking to people.

[wkikta]

It sounds like an IPIR, Immediate Post Injection Reaction, not very common, but it does happen. A lot of the stuff sounds like they may have been caused by stress from the IPIR. The IPIR won't kill you, just feels like it will.

You keep doing the injections, aware of what might happen, and believe it is helping to control the disease.

[bluemanda]

Thank you.

I had another shot last night and it was "normal"
I was scared to but I just know it is working well for me. Although I haven't had my checkup to verify it, I haven't had what I think flares are. And problems I have had haven't sent me to the hospital yet or required extra medication.

I love this site for the encouragement, tips, ideas, and general sharing that goes on. Even the venting because we all need to do that at times, and being able to help others is a great thing.

[mscamillec]

that happened to me at least 5 times didnt happen at every injection. but the last time it happened was when i was on vacation in the hotel room.
Camille

[jojo18]

something similar happened to me, only it was full blown anaphylaxis while on tysabri.

[Mamabug]

Yup. What Bill said.

http://www.sharedsolutions.com/Get-A...axonefaqs.aspx

Copy/paste web address into your browser for Shared Solutions' suggestion on what to do about an Immediate Postinjection Reaction. It will take you to their FAQ page, and this question is about half-way down.

~ Faith

[DianeD]

Don't think so!

I don't agree with any conviction that this is just post injection reaction.

I'm almost a year on C and about ready to give it up with the hope I will return to some level of normal (for me anyway).

From the time I began my injections I have been on a downhill course. I had my MRI in December and it showed no progression. but usually that has been the case even without the C.

I began to really feel weak and (if possible) even more tired almost right after I took the C. I tried to just pass it off as just an exacerbation (something I never have had) and to trust and just keep on.

I have had the usual redness, stinging and swelling, but even that is diminished by giving manual injections.

I have become shaky, have more urinary tract problems, blurry vision and weakness.

I think with any other med, if we reported to our docs what we are experiencing we would be immediately told to stop.

Perhaps, just as we all experience MS uniquely, some of us should not take the DMD.

At any rate I am going to attempt to get my old MRI's (in other states) and request that my neuro compare them. If they do not show any progression over the past 16 yrs, I'm stopping.

I might not have felt this miserable had I not started the C.

I think it is VERY important that each one of us on a DMD be brutally honest about the improvements. I hope you can compare MRI's also; I'd be interested in hearing if you truly have had no changes.

Diane

[bluemanda]

April

I have to wait until April before I get to see if there have been changes. I wont see the nuero until then. I get the MRI done that morning and then the appointment to talk about it that afternoon. I will post an update. I am very curious too. It will be one year since my April 1st diagnosis by then.

[futurmil2b]

I can relate...

I don't agree with any conviction that this is just post injection reaction.

I'm almost a year on C and about ready to give it up with the hope I will return to some level of normal (for me anyway).

From the time I began my injections I have been on a downhill course. I had my MRI in December and it showed no progression. but usually that has been the case even without the C.

I began to really feel weak and (if possible) even more tired almost right after I took the C. I tried to just pass it off as just an exacerbation (something I never have had) and to trust and just keep on.

I have had the usual redness, stinging and swelling, but even that is diminished by giving manual injections.

I have become shaky, have more urinary tract problems, blurry vision and weakness.

I think with any other med, if we reported to our docs what we are experiencing we would be immediately told to stop.

Perhaps, just as we all experience MS uniquely, some of us should not take the DMD.

At any rate I am going to attempt to get my old MRI's (in other states) and request that my neuro compare them. If they do not show any progression over the past 16 yrs, I'm stopping.

I might not have felt this miserable had I not started the C.

I think it is VERY important that each one of us on a DMD be brutally honest about the improvements. I hope you can compare MRI's also; I'd be interested in hearing if you truly have had no changes.

Diane

Although I have not been taken C for a year... my first injection was not that great. I mean the injection itself was fine.. it stung a little but it was ok.

That night, I could not sleep at all, have enhanced anxiety, and lack of appetite. I called the shared solution nurse.. she told me not to take anymore injections until I talk with my Neurologist. I know he is going to tell me to try it again.

C is not for everyone and like you stated I don't think all MS patients need DMD and I think I am one of them. Granted prior to taking C, I stayed tensed a lot but anxiety was not that bad, was sleeping and appetite was pretty good.

I am hoping that one shot did not do too much damage... the SS nurse said no, one shot would not do too much.

Ms. Jay

[MSersRULE]

I don't agree with any conviction that this is just post injection reaction.

I'm almost a year on C and about ready to give it up with the hope I will return to some level of normal (for me anyway).

From the time I began my injections I have been on a downhill course. I had my MRI in December and it showed no progression. but usually that has been the case even without the C.

I began to really feel weak and (if possible) even more tired almost right after I took the C. I tried to just pass it off as just an exacerbation (something I never have had) and to trust and just keep on.

I have had the usual redness, stinging and swelling, but even that is diminished by giving manual injections.

I have become shaky, have more urinary tract problems, blurry vision and weakness.

I think with any other med, if we reported to our docs what we are experiencing we would be immediately told to stop.

Perhaps, just as we all experience MS uniquely, some of us should not take the DMD.

At any rate I am going to attempt to get my old MRI's (in other states) and request that my neuro compare them. If they do not show any progression over the past 16 yrs, I'm stopping.

I might not have felt this miserable had I not started the C.

I think it is VERY important that each one of us on a DMD be brutally honest about the improvements. I hope you can compare MRI's also; I'd be interested in hearing if you truly have had no changes.

Diane

DEAR DIANE,
[I AM NOT A DOCTOR, JUST SOMEONE ELSE WITH RRMS.]I KNOW THIS IS LATE, BUT I AGREE THAT WE ARE RESPONSIBLE FOR REPORTING OUR REACTIONS. I HAVE BEEN ON C FOR OVER 9 yrs WITH GREAT SUCCESS, THANK THE LORD. WE ALL MUST SEARCH UNTIL WE FIND THE BEST FIT. PLEASE, IF YOU HAVE NOT ALREADY DONE SO, CALL SHARED SOLUTIONS AND REPORT YOUR ISSUES TO THEM, AND MAYBE EVEN TO TEVA DIRECTLY. WE ARE ALSO ENCOURAGED TO REPORT OUR INDIVIDUAL RESPONSES, REACTIONS, AND SUGGESTIONS TO THE FDA DIRECTLY.

I AM NOT A DOCTOR...BUT I ALSO KNOW THAT THERE IS NO SUCH THING AS A DRUG THAT DOESN'T REACT TO OTHER MEDICATIONS, TREATMENTS, SUPPLEMENTS, OR MEDICAL PROBLEMS. THE MORE THE DRUG MANUFACTURER HEARS FROM US, THE DRUG USERS, THE MORE THEY MUST BECOME ACCOUNTABLE FOR THEIR CREATIONS.

FOR WHAT IT IS WORTH, I DID EXPERIENCE A SIMILAR SITUATION WHEN I FIRST STARTED COPAXONE INJECTIONS. IT WAS ALMOST LIKE MY MS WAS REBELLING. I DID SLIP IN HEALTH, AND SOME OF MY OLD AND FORGOTTEN SYMPTOMS CAME RUSHING BACK. SINCE I HAD PROMISED MYSELF TO COMMIT TO COPAXONE FOR 6 MONTHS [BARRING IT BECOMING FATAL], THINGS SLOWLY RETURNED TO THE WAY THINGS WERE; I RESPONDED TO MY C THERAPY WITHOUT ANY MORE ISSUES. I HAVE HEARD FROM MANY OTHER COPAXONE USERS THAT THEIR MS "FLARED-UP" AS SOON AS THEY STARTED COPAXONE. PLEASE REMEMBER THAT MS CAN BE "SILENT CRIPPLER" ROAMING AROUND INSIDE YOUR BODY DOING DAMAGE WHICH MIGHT NOT SHOW UP FOR YEARS. PLEASE ACCEPT MY THOUGHTS AND COURAGE FOR YOU SO THAT YOU MAY FIND A BALANCE WITH YOUR LIFE WITHOUT, AND YOUR BODY WITH IT. CB

***Message broken into paragraphs for readability. Some of our members have vision problems with large blocks of type.***

[bluemanda]

Update sooner than planned...

Well, waiting for my appointment in April I have continued taking the copaxone.

Well, last night I had another reaction. Pretty much exactly the same as the first one. Difference is I knew what to expect so I was able to try to stay calmer.

I talked myself the being hard to breathe and the intense back pain so that I didn't add a panic attack on top of it. That helped.

I just wish it didn't leave me so weak the next day. I actually had to call in sick at work, I slept most of the day.

This is the first time I had to call in sick related to MS. This makes me nervous.

More of an update after the April appointment, unless other changes happen.

[renie50]

I couldve written your original posting, I have had more than one of those experiences. They are brutal, one got so bad I had to go to the ER where they had no idea what to do for me but give me a pain shot as the muscle spasms all over my body got so bad, and also something for the nausea as I could not stop heaving (dry). I have these reactions with about every 10-12 shot, and I was having after effects for days after that. I dread shot night and have several people on speed dial and one friend who actually comes to sit with me just in case it happens. Very frightening! The chills and back pain came on so fast it was like nothing Ive ever had. Good luck !