Delayed Post-Injection Reactions?

[malaholic]

Hi everyone -

I have been diagnosed recently and just started Copaxone last week, on the 40 mg 3 times a week regimen. Shot #1 (back of arm) and shot #2 (hip) went really well.

Last night I did shot #3 (stomach) and things seemed to be going well. Then, about 2 1/2 hours after the shot as I was getting ready to go to bed I got extreme chills and started shaking uncontrollably. I didn't have chest pain or shortness of breath, but my heartrate skyrocketed. I got as bundled up as I could under a mountain of blankets, but the uncontrollable shaking lasted for almost four hours, and I had an elevated heartrate for almost ten hours. I ended up staying home from work today because the reaction kept me up all night.

By now my HR has finally gotten back to normal and I just have a bad headache, and tend to black out a bit when going from sitting to standing posture.

When discussing the possible IPIR, I'd been told that the reaction, if it were going to happen, would occur immediately upon getting the shot, and that it would last half an hour or less. That is certainly not what I experienced; it didn't start until hours after the shot, and lasted several frightening hours.

Has anyone else experienced this kind of delayed nd prolonged reaction? If I were on the 20 mg dose instead of the 40 would it have been less severe? I am trying to get hold of my neuro to find out if I should do tomorrow's shot, or hold off.

I appreciate any thoughts/experiences you can share!

[ZSP]

The exact same thing happened to me about two weeks ago...it was very scary. I've been on Copaxone for about a year and this was the first time for such a reaction. I was so scared, I woke my husband up and asked him to check on me in a couple of hours.

Fortunately, I was fine the next morning. I mentioned it to my neuro and he's suggested switching my DMD to Tecfidera but I'm really afraid of these newer oral meds.

I'm going to stay with Copaxone for now and hope another reaction like this never happens again. I wish the same for you.

[krystine]

I am so sorry you had that reaction. They are scary I know because I have had them too.

I was on Copaxone for 12 years in total and started having those reactions after 8 years or so. Neuo, shared solutions and other doctors told me it was not a side effect and to try to take an ativan!?! I toughed it out because I was super stable on the med.

After years of being scared to take the needle in case it happened, I decided to switch meds. Just started on Tecfidera 9 days ago.

For me, once that side effect started happening, it just increased in frequency. I was scared of having a stroke seeing as my blood pressure went up so high when it happened.

Hopefully for you, it might not happen again but sometimes we need to switch as scary as it is.

[malaholic]

Hi ZSP and Krystine, thank you for your replies! Are you using the daily 20mg dose, or the 40mg 3x weekly dose? If you've tried both have you noticed any difference between the two in terms of likelihood/severity of reaction?

I just saw the other thread that got bumped out about chills. It seems like on that thread it starts happening within 20-30 minutes of injection.

After that episode, I gave myself an extra day between injections and then tried one more time, trying very hard to avoid any visibly veined area. Unfortunately, I had the same reaction. The shivering starts about 2.5 hours after the shot and gets bad by 3 hours. I figured out this time that perhaps what I'm experiencing is flu-like symptoms. I think both the shivering and the heartrate rise (which did not feel quite as bad this time) are due to getting a rapid fever. This time the chills gave way to a migraine. After a couple hours with a cool wet towel on my forehead I was OK.

It's ironic because one of the reasons I picked Copaxone was specifically to avoid the flu-like symptoms that I read were common to the interferons. I'm not sure if this reaction would lessen over time as I understand happens with the interferons.

I'm not really keen on any of the other drug options and their side effects profiles, so if my body can't get to a point where it tolerates this drug I'm not sure what I'm going to do.

I'm going to try one more experiment when it's time for my next dose. I will take some Tylenol or Advil along with the shot, and I'm going to try manually injecting only about 1/2 of the syringe to see if I could tolerate the medicine better at a smaller dose. If so then I will see if my neuro can switch me to the 20mg at least until I'm more used to it. If not, well, I don't know what I will do. :/

[charris1980]

Are you using the injector? I've also noticed If I set it too deep it seems to happen. For instance I use 6 for stomach area and was at 5 for legs. I lowered it to 4 for legs and haven't had one in awhile. Although I still stay away from outter leg area and just do inner just because those chills ones freak me out and I can't get back to sleep for hours after.

[malaholic]

Yeah, I am using the injector. The first time it happened I thought perhaps it went too deep, so I used a shallower setting for the second time. I think that 2nd injection was actually too shallow based on the localized reaction (much larger, redder welt), but I once again got the chills & fever starting about 2 1/2 hours later.

It seems like for those of you who have experienced this reaction, it's still not an "every shot" type of thing? I see krystine said that it increased in frequency and that eventually made her switch. ZSP said it happened a couple weeks ago, so maybe too soon to understand if it would continue to happen longer term?

I know that with Avonex and the other interferons which are known to cause flu-like symptoms, some people can get through it by taking a Tylenol or something beforehand...has anyone had any luck with that approach with Copaxone?

[malaholic]

Update

So on a different board, one person replied to say that she was having flu-like reactions like this as well (she is on the daily 20mg dose) but she stuck with it and within a couple of weeks the problems were much diminished. So maybe it's just a matter of getting your system used to the drug?

I have done one injection with relative success since then. I made sure I was well hydrated (not sure if that matters, but it can't hurt) and I iced the area for several minutes prior to injection. I also took several ibuprofen right before I injected, figuring it would be active in my system before the shot side effects. Finally, I injected manually, and used only half of the 40mg syringe.

Overall this experiment was a success! By the 3 hour mark, my temperature had risen just a little bit (up to 99 from 98) but that's much better than the 103+ temp I saw last time. No shaking/chills. Still slightly elevated heartrate but not racing like before. I was able to get to sleep and was back to normal by morning.

So, while for convenience I prefer the 3x weekly dose, I'm going to see if perhaps the dr. will prescribe a round or two of the 20mg dosage to see if I can build tolerance to where I don't need the ibuprofen. If that works then at some point I'll try the 40 again. If I still have problems then I guess at that point I might give up, but I'm still not sure what my 2nd choice would be.

That's all for now. Time to go try another injection....

[Bo Perkins]

Copaxone 40 Reaction

Although my reactions were instant and with Copaxone 20 - I am hoping that what I have to say might be of some help.

My nuero stopped me from injecting in areas of my body that has low fat content.

For example, My upper arms. No matter what, the needle hit muscle while trying to inject and the times I reacted - I had injected into areas where the needed had gone through the fatty tissue into muscle.

Yes I was using the diagram - I just have low fat content in some of the areas determined safe to inject in. I am glad they have added more areas that fall into that category.

Anyway I don't know if this helps or not - heck for all I know it may be way too late lol

[malaholic]

Another update - good news!

Hey Bo, thanks for your reply! Between this and a friend asking me today how it was going I realized I hadn't checked back in on this one. I am glad to hear that you've worked out better sites to use for injection and I hope that the treatment works really well for you! I wish I could also say that I was too lean to inject. I'm "small" but not yet "lean"...I'm working on that, but still have fat pockets in each of the injection sites.

However, the shots are going much better for me now too. I have continued to take ibuprofen and aleve with the shots, and have not had the bad reaction since I started doing that. I think my body is adjusting to the medication as I've been able to both inject the whole 40 dosage, and then have been able to cut down to a single advil, without anything more than the expected local site reactions. I am going to try a dose with no ibuprofen next Friday, and I'm hoping/expecting it will go fine. I'm glad I stuck it out. Now I'm just hoping that it actually helps the MS, to make sticking it out worthwhile.

[MsJessiS]

Glad I'm not alone!

I started about 3 weeks ago and had the same reactions! Only when I injected in certain sites! I'm going to try the Aleve route next time I inject in my trouble spots and try to decrease the setting on my injector. It can't hurt to try it!

So glad I found this board!

[Barrister16]

Yes, I have experienced the same reactions but it only happens intermittently. I do my injection in the evening as I never know what kind of reaction I will have. This ensures that I can climb into bed if I do have a bad reaction. I admire the people who inject in the morning and then go to work.

[malaholic]

Barrister16, I also do the injections in the evenings, for the same reason. However I have not had a reaction like that in a long time; and I no longer have to take any ibuprofen before the shot. I guess my system has gotten used to it by now and I only have the typical local reactions now.

Whether it is working though is the real question. My next MRIs will be in May and we'll see if things seem stable or if there is evidence that the disease is still very active. Here's hoping for good news. I know some folks on the board have stabilized well on Copaxone and others not so much.

[Barrister16]

Good luck on your next MRI!