Copaxone scare

[foxz71]

I've been on Copaxone for 3 months now. Last night immediately following the injection I had severe itching which caused me to claw at my head and neck and chest...and then my face went numb...followed by extreme tightness in the chest, and I couldn't breathe (it felt like I was trying to breathe through a coffee stir straw) and then i nearly passed out. My husband kept putting cold water on my face and talking to me and that kept bringing me around but he said I was ghostly pale. Then The extreme pain in my hips, my back and my legs. Finally, as my breathing returned to normal (about 15-20 minutes later) I began to shake violently. I was so cold, he turned the air conditioners off (it was near 100 outside) and covered me in blankets...I shook like that all night. I was nausiated all night. i woke this morning feeling better but like I've been hit by a truck. I ache all over and i am so tired.

This is the first time I had this reaction. I am so scared to take the drug again. Do you think it might be a one time thing since i've been on it for three months with no reactions...or do you think it could happen again? Part of me wants to quit therapy...I don't know what to do. Is there anything you can do to head off a reaction like that?

please help, any advice...
Kim

[wkikta]

It sounds line a fairly bad IPIR, Initial Post Injection Reaction. They are not common, but do happen. The Heart Attack feeling is very scary. If you wish to continue the Copaxone, probably should, just be aware of this, probably won't have as bad an effect since you know it will be okay. A lot of the after effects were probably caused by the extreme stress, hit by a truck feeling.

Not much you can do to prevent the reaction. Try drinking the proper amount of water during the day, hydration can affect many things.

Just remember it is not as bad as you first thought and is not very common.

[Spydre]

I would talk to your doc today if possible. It could be an allergic reaction and it could be IPIR. Either way, you want to let your doc know what happened, and get his/her take on it.

[sallylou]

Copaxone has a help line too, for reactions, although the one you spoke of, sounds like the one time reaction that I was warned about, that could happen right around 3 months. If you go one the web site for copaxone, you will see this side affect listed, and the help number as well.

[apple19]

I had this same reaction a month after starting Copaxone. It was very scary. My neuro and the nurse at Shared Solutions said it is rare that it would happen again. I took a break from it for about four days then my doc said I could continue. I was apprehensive at first but now that I'm back on it I haven't had a problem. Please let your doc know what happened.

Take good care!

[agate]

Hi foxz,

I never had this reaction in the 3 years I was on Copaxone but I understand that about 10% of the people taking Copaxone have the IPIR at one time or another.

It can happen at any time while you're taking Copaxone, and it isn't a one-time thing. Some people have had a number of these reactions.

Some opt to stop Copaxone entirely after an IPIR but many go right on taking it. It's a risk that comes with the drug but the experts keep saying there's no real danger. The reaction passes. Typically it comes on right after the shot and might last up to 30 minutes.

The Shared Solutions literature used to give instructions on how to deal with an IPIR. They tell you to stay upright, not to lie down, but I've seen a couple of posts where people said they absolutely had to lie down.

I watched posts about these reactions here all during the time I was on Copaxone because I was concerned about them. (I live alone and passing out could be a problem.) I noticed that a few people told about fairly severe reactions, and they ended up in the ER.

I hope this doesn't discourage you from staying on Copaxone. Many people are willing to take the risk of an IPIR for the sake of the benefits of Copaxone. I didn't stop taking it because of the risk of an IPIR. I stopped it because a couple of side effects were hard to deal with and because I've had SPMS for over 30 years and wasn't sure Copaxone was helping at all.

[twisterred]

Sorry that happened.

Yes, it sounds like an IPIR (Initial Post Injection Reaction).

It is very scary to experience this, but it is very, very rare. It might have something to do with hitting a capillary, I've read.

I've had half a dozen different variations of these over the past decade. Some have been very, very intense like you describe, some have been been very slight, but still very real.

The unchanged MRIs and lack of flares is what made me inject again.
I also was very afraid to inject again, but figured I needed to since the reaction is so rare and the Copaxone has been so helpful to controlling the disease.

I'm glad your hubby was there to help you.
After my first IPIR, DH and I made sure he was there for each shot. Now, we don't stick to that rule because we've gotten more confident.
There is no question that these reactions are scary, though!

I try to be aware of how I feel right after injecting. If ANY blood is in the needle after the shot, I prepare myself for a reaction. Sometimes, I've had reactions with what appears to be a completely normal shot.

IPIR's are odd, but for myself, with the numerous years I have been OK, something I don't think about so much now.

Sorry it happened, glad you posted your concerns.

[whitefrazier]

I am sorry this happened to you. I had a similar reaction while on Copaxone and never when back on it.

I called shared solutions right away. I also called my Neuro and my du took me to several we'd due to mu sever hives. No one knew exactly what is was from or how to help me.

All they neo giving me was benadryl. Did not work. My Neuro was baffled and didn't know what to do.

I went to see a Rheumatolgist and a dermatologist and luck until I did my own research and mentioned hives. The dermatologist agreed and did a biopsy and I was right.

Now I have chronic urticaria (hives) and I am a lot of antihistimines to keep them away. It is doing its job. They say I could have this condition for 2 days or 2 years. It is so unpredictable.

So the itching may be urticaria and it may be from Copaxone. I am allergic to Copaxone now and u may be also. Get checked out from specialists because u don’t want the same reaction to happen again if u can help it.

My Neuro and I talked and now I am on Tysabri and so far I have had 4 infusions and now I am starting to feel a difference. It does take some time to get the benefits.

Let us know your decision.

Thanks for sharing.


** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[EveS]

Hang in there!

Hi all,

I had this exact same experience 4 months after starting Copaxone. The description of the IPIR didnt come close to the really scary reality. My husband called 911, he was so worried.

On the bright side, its been over a year since that awful night and it's never happened again. 17 months into this med, and I feel almost like myself again.

My best advice is to stick with it and hopefully you won't have to suffer through that experience again. I can honestly tell you it's worth it to push through.

Good luck!
- Eve

[foxz71]

Thank you all

I had a really hard time the next night. I spent hours debating whether to quit therapy and weighed the pros and cons of "quality vs quantity" of time as it relates to the disease progression. I made a decision to try it again and I am glad I did; no IPIR. One change that I did make was to take a Benedryl, as a crutch, to help me believe that it would head off that happening even though I know it probably wouldn't...but it worked, I got the needle in. I appreciate all of the responses, I think if I hadn't read some of your experiences it would have been much more difficult.
Thanks again.

[MyGirlsMom]

Fox, that is great that you overcome your fears and took a shot again! Good for you!

In the two years of being on Copaxone, I have had an IPIR twice. The first was quite significant and the second was much more mild. The first time it happened it created a lot of anxiety for me...even the next day. So the second time it happened, I took a small dose of xanax and my recovery was much quicker. I don't mean anxiety like nervousness, but actually physical anxiety that I could not mentally control. I believe that anxiety can be a side effect of the IPIR.

Those are the only two times it has happened....I keep shooting figuring now I will know if it happens again! :-)

[Lexie]

Thanks so much for posting your story. I made my husband read it. I was under the inpression that this could happen perhaps the first week I took copaxone not later on in the treatment. It helped him so much to read that and now we will both know what to expect if that ever happens to me. Thanks again! Glad you are better!

[twisterred]

Thanks so much for posting your story. I made my husband read it. I was under the inpression that this could happen perhaps the first week I took copaxone not later on in the treatment. It helped him so much to read that and now we will both know what to expect if that ever happens to me...

It's wonderful that your husband read this thread.
Hopefully, you won't have to experience an IPIR again, but like you said, you'll both know what to expect if this does occur.

The different IPIRs I've had all were similar, but different.
Hopefully you won't ever have one again.

[MyGirlsMom]

Lexie, it is good that you shared our stories with your DH. I think it would be quite scary to watch someone have an IPIR and feel helpless.

Let's keep hoping the IPIRs are few and far between!

[MyGirlsMom]

Let me add....

Few and far between for ALL OF US!!