Had another post-injection reaction today...

I guess it was just one of those days when I should have stayed in bed.

I get up and my glasses are broken in the case, so I have to put on my contacts - I've been trying to give my eyes a break, but not today.  I'm planning on mowing the yard, so I go into the living room to take my injection.  For some reason the autoject was really slow, and it took a long time - when it finally injected, I started feeling the reaction come on.  I lay down on the couch and try to relax, because I know this will take about fifteen minutes.  Meanwhile hubby is looking panicked.

After about fifteen minutes, my breathing is better and I don't feel quite so much like a balloon.  My face is puffy, and my skin is bright red.  I had broken out in a gross sweat, and thankfully once things eased off, I stopped sweating quite so much.

Then my esophagus starts cramping... lovely!  So I get up and get a glass of tea, and take all my medication, plus a flexaril and an ibuprofen.  Then my skin starts itching - all over!  I was itching so much that I was whimpering.  I took a benadryl and tried not to scratch.  Every time I did the itching got worse.  My scalp was itching so much that I scratched my head constantly... so my ears swell up!  Greeeaat.

So finally I'm feeling better, although my skin still feels stiff, hot and flushed.  My face is still puffy and it looks like I've had a crying jag or something.  I go ahead and take a shower and get ready for work.  I turn the water on cold, because I think it'll feel good.  And it does, but the cold makes my back cramp up!  So I'm out of the shower and bent over at the waist, trying to keep my back stretched out so it won't cramp, and looking for my work clothes.

Three hours later, and I'm still a little short of breath.  And my skin still feels raw and puffy.  

I thought at first that I'd only had one IPIR before this, but hubby thinks it's been at least three, and possibly five.  Now that I think about it, I know I've had two previously - one in my arm, one in my leg.  This was the second time in my leg.  And I stuck to the 'safe' spots - didn't deviate from the top of the leg.  This also feels worse than the previous two.  I'm wondering now if I'm developing an allergic reaction to Copaxone.  Which is just fantastic, as I've finally got financial assistance for it, and my prescription straightened out with Aetna.

[figuerpa]

Sorry to hear about what you have been experiencing. I am not sure of the side affects of Copaxone, but if they are making you feel this bad then maybe you should call your neuro or shared solutions to talk to them about it.

To me it doesn't sound right to have this many side affects with the medication, but then again I don't know anything about Copaxone, so I could be completely wrong about this.

Also how long have you been taking the shots? I have heard that it takes some time to get past the side affects.

Ok, now that I have been no help at all I will stop talking.

Good luck and keep us informed
Paula

[jensequitur]

Hi, Paula!  No, this isn't a normal reaction to the injection.  Normally nothing happens - I inject and go on with my day.  

[starryeyes1]

I have had at least 5 reactions in 13 months to my shots also. I stopped taking injections in my legs because I thought I was "hitting" a vein or something since I always had the reaction after shooting in my legs. Last week I had another after injecting into my left arm.

I wonder for myself if I too, am developing an allergic reaction. My neuro knows of at least 4, but his opinion is that Copaxone is the best 1st line drug. He says I need to weigh the side affects to the benefits and that the other drugs have much worse side affects. I really don't want to change but I am completely nervous lately that its going to happen again. Its absolutely aweful!

I empathize and sympathize.
Hugs,
Kristi

[sllowe]

Holy C rap Jens!

I was scared reading it!

How many of these for you now?
-Shell

[nancy99n]

Usually when I get that type of reaction from Copaxone, I skip the next day's shot.  

At first, I would call the Shared Solutions 800- number and talk to a nurse -- but all they tell you is to stop your injections until you speak to your neuro.  I'd call my neuro and he'd ask me if it was bad enough that I didn't want to take Copaxone anymore?  I'd say no, and I'd start up the injections again.

I have been taking Copaxone since 2003.  I have found these reactions get milder and milder each time they occur.  I haven't had one in a long while now.

Like others have mentioned, I always felt they occurred after I mistakenly hit a vein.  So I'm also much more careful about where I inject.

I've also had Shared Solutions send a nurse out to go over injection procedures.  They'll send someone to you at no charge -- and it's good to get a refresher course every  now and then.

[JemmAus]

Yeah .......well ...........thanks girls. I am still deciding which, if any, DMD I will start. I think I just struck Copaxone off my list.

*stunned, horrified face*

Jemm.

[jensequitur]

Jemm - I would not put Copaxone off the list for this reason.  Many people never have this problem.  

There's a blood test that they're still researching that may point out who will have better results with Copaxone, and who would do better with Betaseron.  I would love to know -

Shell - This is my fourth one (according to my husband - I only remember two previously!)

Kristi - I stopped injecting in my arms because of that very reason - sticking to legs, stomach, and hips only.  Now it looks like I'll have to stop doing my legs, too.

Well, after all that, I went to work, and that was a mistake - after two hours here, I realized that I was no good at all, and took the rest of the day off sick.  I went home and slept for four hours.  My main concern is that I itched a lot after the IPIR.  And my face was puffy, and stayed that way for a few hours.  So I need to call the neuro office and talk to the nurse there.  Like you guys, I've had the same experience with the Shared Solution people, so I'm not going to bother to call them again.

[michelleislay]

i don't have anything to add and just echo everyone's thoughts above, but i did want to point out how much i admire your strength and humour, given the situation!  

i have an image of you in my head as tough as nails!!  way to go jen for carrying yourself so well through all of this!!  

xo michelle

[twopack]

I thought of you last night when I injected my own Copaxone because once I pulled the auto-injector away from the skin, blood started pouring out the hole.  I bet there was enough dark red blood to refill the syringe I had just emptied.  I've had a drop of blood or blood tinged return of drug solution before but NOTHING like this.

After hearing it said that reactions seem to follow injection into blood vessels, I sat braced myself for the chest pain and labored breathing.......Nothing happened.  After 10-15 minutes I was able to relax again.

I'd be sure to check with your neuro too.  Your reactions sound like they have evolved into something beyond the usual expectation for post-injection reactions.

Mary

[rendean]

Jen,
Your reactions sound like a drug allergy not a IPIR reaction especially the puffy  face despite Benadryl. I wouldn't inject again until I spoke to my GP or neuro.

My 2 cents worth,
Ren

[jensequitur]

I agree with ya'll - the itchiness and puffiness wasn't normal for an IPIR.  I didn't inject Thursday or today, and I'm still waiting for the nurse to call me back.

[essdipity]

Good luck, Jen. I was on Copax for two months. The first month I had bee-stinging reactions that lasted up to an hour. Considered myself lucky.

After that, things went downhill fast. Horrible bumps, rashes, itches and especially hives, all indicative of an allergic reaction, and it got worse and worse. Was going nuts, despite all the creams and allergy meds I tried. When my neuro said no, this will NOT get better, I finally gave up.

When I switched to Avonex, such a difference! Have to medicate and be careful about this, but with precautions, 95% of the time I sleep through any reactions and am just fine.

There are some people who are just plain allergic to Copaxone, and I'm one. You might be too. Others should understand that reactions are normal, but the extreme extent of reactions may not be.

Jen, I do hope this is something you can overcome. I know it took a long time to get an affordable DMD, and I'd hate for you to have to start over, but that may be in the cards. Please keep us posted on how you're doing.

Keeping my fingers crossed for you.

ess

[macaroni68]

Wow. How scary. I am glad that you are okay. I would be reluctant to try another shot, but then that is me. Perhaps your neuro or his nurse/assistant can be of some help in resolving this issue, because clearly I am of no help to you at all ;)

But, seriously I hope that things become better/easier than they have been.

[jensequitur]

Well, just talked to the nurse!  We both think it's a little odd to have that much of an allergic reaction, but the only thing to do is keep going and see if it gets worse.  I've got an epi-pen in the house in case I have a really adverse reaction.

>  After hearing it said that reactions seem to follow injection into blood vessels

Hey, twopack - this is not always true.  I was pretty sure that I was safe if I stayed away from the inside of the thigh and just injected in the top.  But apparently this reaction will happen even if you're injecting in a 'safe' area.

[JemmAus]

You're amazing. And so calm! "See if it gets worse"!!!! Blimey. I would have thrown the stuff in the bin after the first reaction!!

I hope you'll be ok....good luck!

[jensequitur]

Believe me, I'm a little nervous!  I won't be injecting in the leg again.  Thanks, guys!

[Quixotic1]

Jen, I'm pretty sure this last one is an allergic reaction.  The puffiness, the all over itching and the length of time before you "felt better" are clues that this was NOT a simple Immediate Post Injection Reaction.

If this is allergy, any one of subsequent reactions might progress with full-blown anaphylaxis which can include cardiac arrest.  Stop the med and make sure your neuro understands the ways in which this differs from the standard description of the IPIR.

Hear me?  I'm sure you will not take another shot, right?

To everyone else:  The IPIR is not that common, they say about 15% of users of Copaxone, and it is benign.  It does not progress to anything serious.  ANYONE, though, can develop an allergy to any thing or any drug at any time.  The IPIR is not associated with a higher rate of allergy to my knowledge.

Quix

[jensequitur]

Well, you make a good point.  I hadn't considered that cardiac arrest could be a result!  I'll call the neuro again and make absolutely sure that they understand the circumstances.  I'm not sure I was able to communicate very well - I was surprised that the nurse said to go ahead with the injection.

[Quixotic1]

Mary - Even though we inject where there are fewer major arteries, there are good sized blood vessels ALL OVER THE BODY.  As frequently as we inject some of us are occasionally going to hit a bigger vessel.  Often the needle will have passed "through" the vessel before injecting and when the needle is withdrawn the blood will escape through the needle track.  This is not necessarily a really bad thing, though it will often lead to some bruising below the skin.  To prevent extensive bruising keep very firm pressure on the site for at least 5 minutes.

I used Avonex and once (while in a safe injection area) I clearly hit a little arteriole and when I withdrew the needle I had 3 spurts, the first one about and inch and an half high, the next about an inch and the last just barely above the skin.  It happens.  It does not mean that the injection went into the vessel, just that the vessel was punctured by the needlle.

Jen - Make a list of the ways your reaction differed from the described reaction in the drug literature.  Then when you talk to whomever, list those differences.  It seems to me that people's descriptions of the communications from Shared Solutions are always a little cavalier and lacking in meaningful information.
Quix

[twopack]

I didn't mean to imply that I thought I mainlined my Copaxone or even injected any portion of it directly into a vein.  I did have a significant amount of bleeding but it stopped easily with pressure and didn't even bruise.  I was surprised that a subcutaneous injection bled so much as there was no vessel visable through the skin at the site and I don't inject any deeper than necessary.  You make the circumstances of injecting very clear though Quix.

My point in mentioning this was to show that drawing blood, even in larger amounts, DOES NOT mean that anyone should expect some sort of terrible reaction.  I have heard it mentioned on the forum quite a few times that these immediate post injection reactions are more likely following an injection that draws blood.  I just don't think it's true.  

Most people here have NOT had post injection reactions.  I do wish you had continued to be in that group, Jen.

Mary

[supermum_ms]

I seem to have missed your 'BIG' scare, sorry i'm coming in a little late. As soon as I read your reaction, it sounded very much like an anaphylactic response. This can happen due to minor changes to a drug your use to or even from a build up of allergens and the lastest exposure sends you into the response.

It would be sensible to find out if you are turning anaphylactic or not, it would be a good idea to get this looked into, i'm a little shocked you were told to keep on injecting without it being investigated further first, especially after the reaction you've described. I know quite a few people with anaphylactic responses to the most common things like peanuts and other with more unusual ones, such as kiwi fruit or milk.

DD after her opp a couple of years ago had a reaction to either mophine or pethedine, not sure which one i'd have to look it up, but the point of mentioning it was that her reaction was similar to what you've described. The nurse was on the ball but the dr's didn't believe it happened because of the drug, probably because it doesn't happen often enough. The dr gave her a shot of the same meds and it happened again, instant response and still the dr was questioning that it was the from the drug. Sometimes the unusual does happen.

Please get it checked out and if it does happen again, call an ambulance just in case! :-)

take care

JJ  

[jensequitur]

Thanks so much, guys!  I really feel like I have a good support group here.

Well, I called the office again and mentioned that I wasn't sure whether I was understood properly last time.  I explained to the person taking the message exactly what had happened, and how this wasn't a normal IPIR.  She agreed with me, and the nurse is going to call me at some point today and we'll talk about it.

I think that I'm going to go with another DMD.  I really hate that I got all this financial assistance and everything set up for a drug that I seem to be allergic to!  I was not happy, but okay with the lipoatrophy and the site reactions.  But I can't take a chance that this  will happen again.

Quix - that's a good idea.  I'll go ahead and make a list.  But I think I'm convinced - this is an allergic reaction that's only going to get worse.

[jensequitur]

Just talked to the nurse - we're going to look into Betaseron.  Here we go again!