avoiding IPIRs with copaxone

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Postby Wonderfulworld » Fri Jul 24, 2009 12:28 pm

I've been on Copaxone over 6 years now and only recently I've had the IPIR's.

I had very mild reactions though, they felt a bit like when I take niacin, not too bad at all. A few times I'd a bit of pain in my chest and had a fluttering heart but it went very quickly. I have been injecting the same areas for all these years so I don't think it's bloodstream issues.
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Concussus Resurgo
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RR-MS dx 1998 and Coeliac dx 2003
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Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby agate » Fri Jul 24, 2009 1:59 pm

To check for blood, after you've pushed the needle in but before you start pushing the plunger, you pull back on the plunger slightly (not far at all). If you see blood in the syringe, that's when some people say you should discard the syringe and start over.

I keep forgetting to check for blood in the syringe, and sometimes I've seen blood in the syringe and gone on with the shot anyway.

I've been taking Copaxone for 2+ years now and no bad reactions yet.

Shared Solutions people say that the IPIR isn't caused by hitting a vein because too many people have had IPIRs without hitting veins.
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Had reaction to Copaxone, neuro thinks it was allergic

Postby Longing4Cheese » Thu Jul 30, 2009 12:31 am

Well, it turns out that, after 6 months almost to the day on Copaxone, I seem to have developed an allergy to it. On June 4 I had a reaction to Copaxone that lasted almost an hour, and included features like a swelling face and mouth, stiff eye muscles (the ones that move the eyeballs), and a tickle in my throat that made me cough (throat closing??). Tingling/burning hands and feet, too. Had the racing heart that comes with the normal IPIR, too. Shared Solutions read from their script and cooed that it was normal, but that I should tell my neuro and not take the drug until he said to go ahead.

To Shared Solutions' dismay, my neurologist (very prominent doctor mentioned above) felt strongly that I should not take Copaxone again, lest I end up needing an emergency tracheotomy. He has discussed thousands of reactions to Copaxone with patients, and this one sounded like an allergic reaction to him. Bummer, I guess, to be a "failed" Copaxone patient, but I'm going to take his advice on this one for sure.

I never stopped doing my strict Swank-inspired diet or my supplements and exercises, so I'm on that (and no drugs) til my next appointment in January. Luckily, I feel fine and dandy, except for some mild weakness and fatigue, but no pain or tingling or numbness, thank goodness.

I'm not missing those bee stings every night, I tell you.

Jack Sprat / Longing4Cheese

KEEP MOVING!!
Male, 44, Dx PPMS 6/2007, Re-Dx RRMS 1/2009. Unofficial EDSS: 2-ish. Modified Swank diet, supplements and exercise (walk, yoga, weights). Tried Copaxone 1/09, stopped after possible allergic reaxn 6/09. Began Avonex April 2010.
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Postby agate » Thu Jul 30, 2009 7:37 am

Hi Longing,
I think it's good that your neurologist took you off the Copaxone. The experts seem to have trouble figuring out what a plain, ordinary, garden-variety IPIR is and what is actually an allergic reaction.

As long as they haven't really figured it out, better safe than sorry.

I doubt that I'd want to stay on Copaxone even if I had one of those plain, ordinary IPIRs, but then I'm a wimp when it comes to treatments that are still new, and IMO Copaxone and the other DMDs are still new enough to be cautious about.
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Postby Vladman » Mon Sep 07, 2009 2:41 pm

Hello everyone. I found this forum using google searching for Copaxone in Vein. I was diagnosed with MS in 97 and started Copaxone in 98. I have had no new symptoms since starting Copaxone. I also stopped eating red meat and eat low fat . A modified Swank diet that seems to work for me. I have had no major reactions from Copaxone except for a minor bump at the site and sometimes a little itchy at the site. Every once in a while maybe twice a year I hit a vein and get a big bruise and very sore at the location. Yesterday I did the back of my arm and knew right away I hit something. I got a funny itchy feeling down my arm and a lot of blood. A couple of hours later my arm felt like Mike Tyson walked up and punched me in it. Several hours after that I felt like I was getting sick. Headache, Stiff neck and back and just felt like a bag of crap and very cold. Went to sleep and woke up a few hours later feeling a little better but still had dead arm and felt like I was getting a cold, flu or tripple e. Went back to bed and woke this morning feeling a ton better but the back of my arm is all black and blue and under my arm is a giant blotch of blood red bruise. I guess I hit a vein and good. Other than my entire arm aching me today I feel fine. So I googled and found this site. Figured I would post and make some buddies I can share with. I never talk about my MS with anyone.
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Welcome, Vladman

Postby Longing4Cheese » Mon Sep 07, 2009 6:32 pm

I think it's a good thing to post on a good forum to whatever extent you feel like. I am a pro-active patient compared to most people, and I have been searching hither and yon for information. Of the several sites where I have "joined," I find that ThisIsMS has the most informed and intelligent discussions among its members. Some sites are more emotional-support-oriented, but I like ThisIsMS because many of the members have taken quite a bit of time to educate themselves. Emotional support and encouragement happen along the way, rather than being an end in themselves here.

MS is of course a mysterious disease, and there are a lot of different models and theories about its etiology and treatment, but I find that even the practitioners of the more "fringe" treatments are respectful of the choices of people who go a more mainstream route. It's a good crowd here.

Members here are more internationally based than many other sites, i think, and the number of active posters seems small to me. It's important to get information about your local resources (like a neurologist who specializes in MS whose philosophy/approach is copacetic with your views and personality), so having pen pals on other continents doesn't help that much on that front -- except perhaps to share their own experiences with their healthcare providers, which may give you insight on what you want in yours.

Anyway, welcome, Vladman. Feel free to talk about your MS here.

Best,

Longing4Cheese (aka Jack Sprat) -- viva modified Swank diets!
Male, 44, Dx PPMS 6/2007, Re-Dx RRMS 1/2009. Unofficial EDSS: 2-ish. Modified Swank diet, supplements and exercise (walk, yoga, weights). Tried Copaxone 1/09, stopped after possible allergic reaxn 6/09. Began Avonex April 2010.
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Postby pager » Sat Sep 19, 2009 8:55 pm

Well, I had my first IPIR about 1 1/2 hours ago!

I am just over 90 days on Copaxone and injected into my left arm. The feeling seemed to come up through my stomach, to my chest and then my face. It was hard to breathe and I felt hot and my face and fingers tingled. I managed to yell for my husband, who quickly came. He said that my face was bright red and my chest had red splotches. My stomach was upset too (diarrhea)....maybe from the anxiety.

About 20 minutes after it happened I called my Copaxone Peer. She chatted with me while I tried to calm down. She told me to sit up and work on my breathing....she said laying down makes it harder to breathe. My rep was great and chatted with me for about 30 minutes until I felt better.

So, now I am typing this to share with others that may go through something similar. I still don't feel quite right, but perhaps my body just now needs a good night sleep.

BTW, my rep also said that I need to call my neuro before I take my next shot, so I will call the on call doctor tomorrow.

The good news, I survived an IPIR and my husband said he thought I handled really well. Thanks for listening.....

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