Copaxone 40 reaction?

[Deludel]

Curious if anyone else has had a post-injection reaction to Copaxone 40 (3x a day injection) .. it was only released by the FDA this year - as opposed to Copaxone 20 (daily) which has been out for 15-20 years. When I switched to 40, I asked about side effects and was told there are no new issues over the 20. It was a no brainer to switch to the 40.

I started taking it at the beginning of June. On 6/18, I took the shot before bed then about an hour after sleeping I woke up with EXTREME chills/shivers. I was too cold to move - woke up my husband to pile blankets on me. My teeth were chattering nonstop. It was over in 15-20 minutes, I went back to sleep and was fine in the morning.

2 weeks ago I was sick - both myself and my daughter had a virus that caused a high fever. On the day I was starting to feel better, about 40min after doing my shot, the chills came on. They were intense, much worse than last time. My body was tremoring - legs and arms twitching from the chills. I was hyperventilating .. it lasted 20minutes.

I called Shared Solutions and the nurse said some of my symptoms matched the documents reaction, but typically its immediately after the shot - and people get hot not cold.

Called my neuro who was inclined to think it was the shot - they had another patient report extreme shivers an hour after the shot.

So - my gut is, it's a different reaction to the 40. Anyone else get these episodes of chills about an hour after taking the shot?  

I've decided to stay on it for now .. waiting to see if it happens again. I really do not want to go back to daily.

[MSLupusmom]

OMG. So glad I'm not the only one. Newly diagnosed with MS. On copaxone 40mg. First 3 shots were fine. Shots 4,5 about three hours after giving my intire body starts aching, extreme chills, muscles cramping, fever (100.9-102.0), hands burning, headache. Reported it to Shared Solutions and they acted familiar with these symptoms. My neuro wasn't and said to try zyrtec and tylenol prior to injection. Last night I did and same thing happened 3 1/2hours after injection. It's so intense and painful I don't think I can do this shot and I really want it to work. I'm nursing my baby and don't have any options besides this.

[DoloresGirl]

Adding to this post a few months after the last posting here-  I started Copaxone 40 mg in mid-August. I have been diagnosed with Radiologically Isolated Syndrome last spring (http://radiopaedia.org/articles/radiologically-isolated-syndrome) meaning i have leasions but no symptoms. My neuro and second opinion neuro both recommeded Copaxone.  I had no issues with my first few injections.  My 4th injection I had side effects like the chills described above (almost like contractions- I even threw my shoulder out from muscle contractions), and then lucky me,  I started vomiting, for hours!  I was sure I had a virus.  Then my next injection had the same thing- contracting chills followed by hours of vomiting and a day or two of recovery like I did have the flu. SS nurse read the stat that 3% of people in clinical trails, yadda yadda yadda.  Neuro finally prescribed an aspirin and the anti-nausea med Zofran.  Both those worked great for the nasty side effects,  and I was just able to go off the aspirin and Zofran as the horrible side effects stopped finally.  Just in time as the Zofran has a constipation side effect.  My Neuro was sure I'd get past the contracting chills and vomiting and fortunately he was right. Whew.  Now my issue is the red welts, bruising and DAYS of bad itching at the injection site.  I read on this site that the itchy welts stop eventually.  Please let that  be soon.  All this is so weird for me.  I am healthy,  and I have no MS symptoms,  just MS med symptoms. But I am lucky, if I have MS that was caught early and treated it early. Fingers crossed for us all.

[Srosky]

I am so glad I found this post!  This is what is happening to me about an hour after the shot! It happened a few times in my 3 years on 20 mg, but since switching to 40 6 months ago, it is happening much more frequently.  Like about 10 times in 6 months!!  Shared solutions acted like it was not a known thing & talked about the immediate post shot reaction which I have also experienced, but this is different!

[Srosky]

I am so glad I found this post!  This is what is happening to me about an hour after the shot! It happened a few times in my 3 years on 20 mg, but since switching to 40 6 months ago, it is happening much more frequently.  Like about 10 times in 6 months!!  Shared solutions acted like it was not a known thing & talked about the immediate post shot reaction which I have also experienced, but this is different!

[melissabarnett]

same thing is happening with me to  take shot then chilles  shaking  fever first time soaked bed with sweat  lasted almost all night freaked me out   second time same thing had to use my hairdryer to keep me warm  called dr waiting for call back called shared solutions no help there said to call my dr  hope u get better results  

[LowieG]

Last night I had this injection reaction:  Chills, teeth chattering, my hands were hurting and felt like they were burning and freezing at same time, shaking and muscle tightening.  My symptoms occurred about 30-40 mins. after the injection and last for about one hour.

This is the 2nd time this has happened, last nights being more intense.  I have been on the 40 mg for a little over a year.  This never happened on the 20 mg.  Hmmmm . . . . . .

[learios]

I have had the same reaction (the chills, shaking and muscle tightening, almost like a contraction) about 10 times on both the 20 and the 40.  I was on the 20 for about seven years and didn't develop these additional symptoms until about one year ago.  My doctor said the 40 is supposed to have less side effects, but don't know yet if that is true.  I can't figure out why sometimes it occurs and sometimes it doesn't.  My symptoms occur one hour after the injection and last for about one hour.

Lea

[MegMS]

Very similar experience just yesterday. I've been taking Copaxone 20 since before it was approved by the FDA -- so around 20 years or so. I've never had a problem more troubling than an occasional sting or accidentally hitting a vein. Sometimes it stings a little more, sometimes I don't notice it at all, I quit using the autoject years ago because it was more trouble than it was worth.

Several months back (maybe six or more?) I switched to Copaxone 40 because -- who wouldn't? Three times a week instead of every day: yes, please!

Yesterday I took my Copaxone 40mg shot and as soon as the needle penetrated it stung. No biggie. And it stung during the whole injection. No biggie. And as I was breaking the needle and disposing of the pieces, the area around the injection site began to itch. ("That's odd") And I noticed that the injection site had a small bleed, it happens. Not infrequently, either.

In the time it took to collect a Band Aid, maybe two seconds, then open the Band Aid and place it, a very dark red welt had formed that stretched from my waistline past my hip (where I had injected) to mid-thigh, and from the center or my torso front to back. The ground-zero injection site was a livid purple and blue.

And it was freakishly frightening. But I had no shortness of breath or something that might indicate anaphylaxis, so I wasn't prepared to call 911. I was just scared.

By the time I had spoken with the doctor's office, the welt had faded. Benadryl was recommended. They would keep in touch, and I'll switch back to Copaxone 20.

I didn't take the Benadryl, though, because the welt had calmed itself. But thanks to the adrenalin rush, I was spent, so rested. I felt okay except for the heat coming off my leg and torso. I had an appetite, no other problems, not until later in the day I took a nap and when I awoke from a nap with lots of joint pain and a fever closing in on 102F. Tylenol, compresses and eventually the Benadryl.

I have one more Copaxone 40 to take before switching back. Not a fan, for sure. And this wasn't the only thing. Since beginning the 3x weekly dosage, I've noticed a slow decline in my energy and gait, so I had planned to talk to the neuro at the next appointment about switching anyway. But this ... I did not expect this and now I'm afraid that if my body is allergic to Copaxone 40, it's simply allergic and I won't be able to take Copaxone 20 either. I hope that's not the case because it has really kept me stable for a couple of decades now.

I shouldn't have messed with what was working so well.

[Dee224b]

Hi I have been on cop axons several years I started with the 40. Last May. June I started with severe chills shivering  and my hands are hurting and feel like there burning at the same time I am freezing.  I have had the nurse here several times.  And talked to my dr. She told me to try Benadryl.  I dread the shot

[Kamoamo]

I have also experienced the extreme chills after switching from 20 daily to 40-3 times a week.  It's happened 5 times now with some episodes worse than others.  They last longer for me about 20-50 minutes and it's hard to get warm.  I've been making sure I warm up shot before I inject to see if that helps.  I keep documenting to discuss with neuro,  been on copoxone for 16 years ... Not sure if I'm ready to switch.

[Deludel]

Alex thanks for the input - first, good point about FDA and SS. Second - I have another thread about the MS Hug, and my neuro said it does not cause sharp pains when taking deep breaths .. yet I swear it was the hug, and that's what it did. So your perspective about tylenol causing breathing problems for you .. I'll go ahead and say the hug causes sharp pains when I take a deep breath. Thanks for the perspective.

[HVAC]

You are probably right. By law, the FDA the SS Nurses have to stick to a script.They can't tell you what they think. It is always better to call your own doctor or nurse. I never had that reaction with the 20 only skin reactions but it is possible. Anything is possible with medications. I am allergic to tylenol I have trouble breathing if I take any medication which has tylenol in it. I had a doctor tell me tylenol does not cause breathing problems. It does with me.

Alex

[jbwarrior]

I suffered the chills too after 4 shots and one month later still an injection site reaction.  Apparently I am allergic to first plegridy and now copaxone.  Switching to Tecfidera Sat.  Wish me luck, and 3 ttmes a charm I hope.