Copaxone reaction

[berkeleylane]

Hi. I just started Copaxone and last evening was my 5th injection.

A few minutes after I had intense itching and hives all over my body. My heart was pounding, my throat swelled, the bottoms of my feet were painful to touch. I was anxious and really scared. My awesome husband, who I am grateful for everyday, was with me.

We are housesitting about 30 minutes out of town, so he thought we should drive towards the hospital just in case. The drive helped with my anxiety and after about an hour I began to feel better but man the itching was intense. We didn't go in emergency.

Everything was fine after. This morning the hives were gone. I'm going to put in a call in to my neurologist and discontinue the Copaxone until I get the ok. I really don't want to go through that again.

Has anyone else out there had a reaction like this before?

[Mable]

Yes, I've had that

I went from daily 20 mg to 3x/week 40 mg and experienced itching and hives. Mine wasn't as severe as yours, but it was an allergic reaction nonetheless.

I called Shared Solutions, stopped the shots, and went to see my neurologist. He put me back on 20 mg and I'm fine.

One small barrier I ran into was that Shared Solutions and my neuro first assumed it was not an allergy.

"Oh, you were itchy, that's normal with Copaxone," they said. But it's not normal when it's not at the injection site!

They'll talked about the IPIR reaction, and I had to emphasize that the IPIR reaction does not include hives.

Not a big deal, but just make sure they know you had non-localized itching and hives.

[berkeleylane]

Thanks Mable

thank you for your response. I will talk to my dr ASAP.

I can't tell you how much it means to me to read your reply.

[its2much]

Mable

Sorry to hear you had to change back to the 20mg - you were so excited about the change to three times a week! Have you heard anything about the generic 20mg being released?

[Mable]

its2much

I haven't heard about the generic 20, but I notice my insurance suddenly only pays for 1 month prescriptions at a time only now, rather than 90 days. I'm wondering whether that's because they plan to push 20 mg users to the generics as soon as possible. My neuro said that when the generic comes out, the brand name should come way down in price too.

I don't much care. After my reaction, I asked my neuro if I could just go on Lemtrada when it's approved, and he said okay. So, if all goes well, I'll be off Copaxone within a year anyway.

[Koshtoo]

Copaxone gave me hives, too.

I was on the 20 mg dose of Copaxone for about 10 months when I developed chronic hives and angioedema. Like Mabel, my neuro (at the time) wouldn't believe the Copaxone was causing the hives. He blamed it on everything else, including stress. He's my ex-neuro now and I'm on a new DMT.

I went to an allergist who diagnosed me as having chronic, delayed pressure urticaria. I would break out all over, but especially wherever there was pressure on my skin. It's considered a "non-allergic" form of hives, but after ruling out other causes of chronic urticaria, she agreed the Copaxone was the likely cause. I tried to tough it out for a few months by taking anti-histamines and steroids, but eventually quit when I woke up an hour after doing a shot covered in hives and with my tongue swelling up. It took several months, but the hives and swelling eventually went away.

There is very little medical research into chronic hives, and even less into hives and Copaxone. I tried modifying my diet to avoid histamine-rich foods, which helped for a short time but was extremely difficult to follow. I took pictures during bad flare ups so I could show my doctors, which helped prove it wasn't just the site reactions. I also saw a dermatologist, who prescribed a strong steroid ointment that helped when I was having miserable outbreaks, especially for my hands and soles of my feet.

I just stumbled on this article this morning from another person on Copaxone who developed hives:
http://www.mssociety.org.uk/ms-suppo...d-side-effects

Good luck. If your neuro is not supportive, get a second opinion.

[Mable]

Interesting, Koshtoo

Thanks for sharing that link. I had a bad allergic reaction to gad enhancement a year ago and ended up in the emergency room (which, as luck would have it, was just across the hall from the MRI machine). Even then, I had a hard time convincing anybody that something wasn't right at first. I don't think they believed me until they say the hives.

"Nobody is allergic to gad," they said. And when I went to my last MRI earlier this year, I had to again remind the tech that I don't get gad.

"The radiologist will want gad pictures."

Tough luck, you're not putting that in me.

Bottom line? It pays to be as informed as you can be. Be your own best advocate!

[Cat Mom]

When you say "gad", do you mean that stuff that's injected to see contrast?

[Mable]

gad=gadolinium

Catmom, Exactly, contrast aka gadolinium enhancement. Sorry for being cryptic there.