Copaxone injection reaction

[jmerced]

Hi MS World,

Monday I injected Copaxone into my stomach using my auto-injector. After the needle punctured my skin, the device distributed the meds into my stomach much slower than normal. It took about 30 seconds.

A few minutes later, both of my arms grew very sore and tired. Like the flu, but in my arms. I went to lay down, and when I pulled the blankets over my feet, a slight gust of air caught my foot and a SEVERE chill ran up my entire body. I then had an attack where I could not stop shaking, shivering, and could not get warm despite the amount of blankets and body weight my boyfriend put on me.

Weird experience, but I woke up feeling fine. The spot that I poorly injected the meds didn't hurt the next day... until today it's unbelievable. This is possibly the worst post reaction site rash I've ever had (been on Copaxone for 5-ish years), the bruising is so deep and the entire right side of my torso is swollen. It's incredibly painful, without even touching it. It feels almost like a burn, or open wound.

Has anyone experienced something similar? Would you go to Urgent Care? I really just want some relief for this pain in my stomach, but I'm not sure there's anything they could do?

[Kimba22]

Hi MS World,

Monday I injected Copaxone into my stomach using my auto-injector. After the needle punctured my skin, the device distributed the meds into my stomach much slower than normal. It took about 30 seconds.

A few minutes later, both of my arms grew very sore and tired. Like the flu, but in my arms. I went to lay down, and when I pulled the blankets over my feet, a slight gust of air caught my foot and a SEVERE chill ran up my entire body. I then had an attack where I could not stop shaking, shivering, and could not get warm despite the amount of blankets and body weight my boyfriend put on me.

Weird experience, but I woke up feeling fine. The spot that I poorly injected the meds didn't hurt the next day... until today it's unbelievable. This is possibly the worst post reaction site rash I've ever had (been on Copaxone for 5-ish years), the bruising is so deep and the entire right side of my torso is swollen. It's incredibly painful, without even touching it. It feels almost like a burn, or open wound.

Has anyone experienced something similar? Would you go to Urgent Care? I really just want some relief for this pain in my stomach, but I'm not sure there's anything they could do?

Better, yet - Go to the ER, NOW!!! Urgent Care would send you there, anyway! Severe allergic reactions are nothing to mess around with! You'll be given meds to hopefully calm this reaction before it gets any worse!!! Don't inject Copaxone again until you've been cleared by your neurologist.

http://www.emedicinehealth.com/sever...article_em.htm

(Side note - I had a terrible reaction to Rebif after being on it for 2 1/2 years, and Avonex (another Interferon 1a) for a year prior to that)

Best of luck, and please keep us updated!

[Alfred E. Neuman]

Id check in with the Er I hope your able to get some relief.
I've been on Copaxone since 2010 and have had a few of those reactions with the chills and shooting up my spine. I do manual 20 mg daily I don't shoot back of arms anymore
Had a spot in the stomach that was huge welt and painful for 3 or so days after still have a scar from theshot I just try to avoid it on my stomach day.

[Thinkimjob]

I thought I was having a stroke, first time it happened to me. Sweaty, hot/cold, dizzy. Went away after a while.

[jumangi]

Hi MS World,

Monday I injected Copaxone into my stomach using my auto-injector. After the needle punctured my skin, the device distributed the meds into my stomach much slower than normal. It took about 30 seconds.

A few minutes later, both of my arms grew very sore and tired. Like the flu, but in my arms. I went to lay down, and when I pulled the blankets over my feet, a slight gust of air caught my foot and a SEVERE chill ran up my entire body. I then had an attack where I could not stop shaking, shivering, and could not get warm despite the amount of blankets and body weight my boyfriend put on me.

Weird experience, but I woke up feeling fine. The spot that I poorly injected the meds didn't hurt the next day... until today it's unbelievable. This is possibly the worst post reaction site rash I've ever had (been on Copaxone for 5-ish years), the bruising is so deep and the entire right side of my torso is swollen. It's incredibly painful, without even touching it. It feels almost like a burn, or open wound.

Has anyone experienced something similar? Would you go to Urgent Care? I really just want some relief for this pain in my stomach, but I'm not sure there's anything they could do?

Only thing similar for me was the chills which were the onset of a medium grade fever that topped out at 103F. This only happened twice early in my treatment, and my body apparently adjusted to the medication.

As others have pointed out, the severe rash may be a warning sign of an allergic reaction. I would not ignore that. I'd at least consult my neurologist, or take a trip to an urgent care.

Best wishes,
Bill C.

[jmerced]

Update

The pain didn't subside, it actually got worse. Woke up feeling like I was being branded, it really burned. I have a pretty high tolerance for pain and it was severe. I went to urgent care yesterday morning, the doctor disregarded my wound, and believes it's just a deep hematoma. He put me on antibiotics even though he doesn't think it's infected. I started taking them yesterday and the pain has subsided a little, perhaps unrelated.

I've been injecting for years and obviously we've all had terrible post injection site reactions. This was a new one for me. I started googling Copaxone and "burns" and found that a very similar looking reaction to mine (almost identical, but I don't think I can post my pictures here?) is that of those who have been diagnosed with "Nicolau Syndrome." One example- http://bmcneurol.biomedcentral.com/a...883-015-0504-0

Apparently it can heal up on it's own (which, since my pain is lessening, I'm optimistic it is getting better), but I am very nervous of this happening again. I'll talk to my neuro about it when I see him in a couple weeks.

[jumangi]

Wow, that article you cited is scary.

If it were me, I'd show a copy of that to the next doc I saw (neuro or not).

[Kimba22]

Hi jmerced,

Thanks for the update!

Wow, that article you cited is scary.

If it were me, I'd show a copy of that to the next doc I saw (neuro or not).

Yeah, I agree.

"GA injections can be complicated by isolated or recurrent Nicolau Syndrome, a potentially life-threatening condition of which neurologists should be aware." Yikes! Thanks for sharing this information with us. (It can also occur with Interferons)

I'm glad the pain is lessening, hope that's a good sign that it will heal on it's own. But, you need to call your neuro and let him/ her know what is going on! Don't wait until your scheduled appointment.

Glad you finally decided to have a doctor look at it. Sorry the urgent care doc was so dismissive. But, looks this reaction isn't on most neurologists' radar, either (The source you provided was also only recently published - December 2015).

If you indeed have NS, you should have it both confirmed and documented. Then it needs to be reported to the FDA http://www.fda.gov/Safety/MedWatch/H.../ucm053074.htm and Shared Solutions 1-800-877-8100 (something I had to do after my adverse reaction to Rebif). Otherwise, your case will remain unknown to them.

Good luck, and please continue to keep us updated.

[jmerced]

Horrible Nuerologist

So, I still have this crazy post injection site reaction healing on my stomach, that I believe SO strongly is Nicolau syndrome.

Today was my neuro appointment and I've never been so upset during and after an appointment with any doctor.

I printed out some documentation about the Nicolau syndrome, and had documented the look of the tissue over the last few weeks. And he examined my stomach and agree that it's screwed up.

He was very defensive. He struggled to understand why I would want to be diagnosed with this, and when I told him so that people subscribing it, the drug company, the urgent care doctor, so they could know that it's potentially a very seriously issue and I felt like my "severe burn" description got brushed over.

He said that no doctor would know what this is, and he's been doing this for 34 years and has never heard of if. He even asked me what I wanted him to do with the information? It was very upsetting to me.

As a separate issue, his nurse before this whole incident insisted I make an appointment with my neurologist after asking to refill my Copaxone script because i hadn't seen him in 2 years. I obliged, but asked for an MRI to be ordered (since this neuro has never had me get one, and my last one was 5 years ago).

Last week when the MRI results came in, for some reason the nurse CALLED to tell me there were 2 new lesions.

I assumed, foolishly I now realize, that my neuro would want to talk about those new spots with me. He didn't, and he was almost ANGRY that *i* ordered an MRI, saying he wouldn't have.

I cried during the appointment, feeling so disrespected in every aspect. I'm still so upset. I get that nuerologists are super smart and my previous one lacked bed side manner, but what neurologist doesn't care to see the brain progression in their patients?

Needless to say, I won't be going back to him.