avoiding IPIRs with copaxone

[DizzyDean]

I have mostly been a lurker on this board, but I do post now and then. I have been on copaxone for 13 months now, and just got the results of my 1 year brain MRI. The results are favorable (some improvement, no new lesions or Gd enhancing lesions) and my neurological exam was improved somewhat from before I started copaxone. Oh, and no relapses since starting

But, I do need advice about IPIRs - I've had 3 of them. Doozies, well beyond the 10-15 minutes of flushing. Yes, I get the flushing and it resolves in 10-15 minutes. But then ~1/2 hr later I get hives at the last 20 or so injection sites followed by 1/2 hour of intensive shivering. Then in one of the three incidents, I vomited. All told an IPIR for me is about a 90 minute to 2 hour process, and honestly the flushing is the least unpleasant part of the whole deal.

Since my injection site reactions have been diminishing and I haven't had any lipoatrophy, the IPIRs are the most formidable objection to this medication. Sadly SS knows nothing about how to prevent these, or how to remedy them once they've started. My neuro feels strongly that its related to getting the medicine into the blood stream. He has several recommendations:

1. abandon using a hot pack before the injection (dilates capillaries which could make it more likely you'll hit one)

2. consider using a cold pack before the injection (related to #1)

3. play with depth (e.g. shallower) - presently I use the autoject with 6mm setting.

3. consider going to manual injection which lets you check for blood before injecting.

Does anybody have any critique or additions to this list?

[cheerleader]

Hey Dean-
Thanks for your post on Copax on the other thread. Glad to hear of your successful MRI. My husband's one year MRI was also better, and no enhancements. He's going strong after 16 months.

Sorry about the site reactions. Are these reactions related to the area of injection? Arms? I think the manual injection should help. Poke a bit before you inject. If there's pain, you're probably on a vein. If not, you're into flesh. Hope you're able to continue your treatment.

best,
AC

[RedSonja]

Yes, use a cold pack. Do not even consider using a hot pack. You don't need anything complicated, a cloth soaked in cold water will do.

If you are of normal build then 6mm is probably alright. But if you are very thin or very fat then you need some other setting. Read the little info booklet and ask your MS nurse.

Manual injection is probably better, but then you can only do those parts of you which you can reach with both hands. After a few months you know very well where you can't go, even with the injector.

If you have tried all these things for at least 3 months and it hasn't got better, then Cop is probably not for you and you should try one of the others.

[DizzyDean]

Thanks for the replies. To me, the IPIRs are much worse than any site reactions I have.

I'd like to ask the collective wisdom of the group as to what causes IPIRs. The leading theories are a vascular reaction (med in bloodstream) or an allergic intolerance caused by buildup of the drug in your system.

If its truly a bloodstream issue than it should be 100% avoidable by manually injecting. BUT - in the initial trials that were done the autoject didn't exist yet some people got the IPIR anyway.

Thoughts?

[Alicia]

Hello,

I too have had problems with bad reactions to Copaxone. I have been on Copaxone for 7 years. I have had many, many bad reactions. Now they probably average once every two months. Most of the bad reactions that I have had are when I hit a vein. But sometimes I will hit a vein and not have a reaction. My reactions consist of tight chest, flushing, trouble breathing. Some reactions are worse than others. When I have a really bad reaction about an hour later I will start shaking. The shaking will last for about 1 1/2 hours, although it seems like forever. I have been told by my doctor that the reactions are caused by hitting a vein.

Alicia

[agate]

The theory about hitting a vein and causing an IPIR reaction made a lot of sense to me, and I always try to check for blood before I inject now. But I did ask Shared Solutions about this and they were very definite in their reply--they still don't know what causes the IPIR. They've done studies and found IPIRs happening when there was no blood, and lots of injections with no IPIRs when there was blood.

As for using a cold pack instead of a hot pack before injecting, Shared Solutions and the nurse who trained me during the first injection told me very definitely not to use a cold pack before the shot.

I would stick with their advice because they produce this stuff.

Still, you wonder why they were allowed to market this drug without knowing what causes the IPIRs some people have.

You might wonder even more about why people like me get our Copaxone completely paid for by the government (Medicaid/Medicare) even though I've had SPMS since at least 1980. What Copaxone does for people who've had MS as long as I have isn't known, and besides it hasn't been tested sufficiently on SPMS.

It looks as if the drug companies have a lot of power nowadays.

I've been on Copaxone over a year now without an IPIR, but if I had one as bad as some people here have described, I wouldn't stay on it. I live alone and it would be difficult for me to get to a medical facility in an emergency. If I passed out, nobody would be on hand to help.

I'll keep on taking Copaxone, but I just wanted to vent some of my serious doubts about it.

[Tekla]

I've been taking Copaxone since last October. I observe very careful site rotation and don't use my arms, but beyond that take no special precautions. I inject everywhere at "10" on the Autoject and put heat on the site afterwards for 15 min.

I've had episodes of flushing several times after a shot and two of accelerated heart rate. Nothing like the stuff you're talking about. A reaction that severe could indicate allergy IMO.

Glad your MRI came out good, though!

[Chaz]

I'm sort of confused about the heat pack thing. My husband was diagnosed in February of this year and even with our consultation with the nurse from SS we never heard anything about a heat pack. Actually we were provided with two cold packs to use that are to be kept in the freezer (they are not ones that are used for shipping). Interesting! Fortunately he's never had a bad episode so he must be doing something right!

[agate]

Hi Chaz,
Are you sure that the cold packs you have can't also be used as hot packs?

The gelpacks that Shared Solutions sent me can be either kept in the freezer for coldpacks or microwaved briefly for hot packs.

I haven't heard of using a hot pack after the shot (until I read the post by Tekla). Shared Solutions and the nurse who taught me how to do the shot said to use a hot pack for 5 minutes before the shot and a cold pack for 1-2 minutes after it.

I don't use the cold pack any more. It didn't seem to help me that much but others swear by it.

[Longing4Cheese]

I have read every post in this thread, and I understand the symptoms / reactions reported ... but I'm still tryin' to figure out what "IPIR" stands for.

I'm struggling with deciding about taking Copaxone for probably PPMS, and I want to understand everything I can about it.

Thanks,

Longing4Cheese
aka
Jack Sprat

[agate]

Hi Longing4Cheese,

IPIR = immediate post-injection reaction

Some people have this rare reaction to a Copaxone shot. I believe it happens to about 10 percent of the Copaxone users. I've never had it (so far) but have read quite a few posts by people who have experienced it.

It can be quite mild or sometimes severe. The instruction booklet on Copaxone advises staying calm and waiting it out (about 20 minutes).

It would happen right after the shot if it's going to happen, as I understand it: flushing, trouble breathing, fluttery or rapid heartbeat, tightness in the chest.

It's "like an allergic reaction," according to Shared Solutions, the Copaxone support line.

Nobody has figured out what causes it. And it can happen to you for the first time after you've been on Copaxone for years.

I try to keep remembering that it's rare.

[Longing4Cheese]

Thanks for the clarification.

I actually thought that was a very common reaction. I have a friend on Avonex, and of course have read many accounts online about people's struggles with the once weekly "shot night" phenomenon. I have been imagining that the reaction you describe is fairly typical, with some people having no reaction, and every once in a while someone has a REALLY bad reaction and has to go to the ER.

I wish I knew what to expect...maybe it's one of those things that I just have to try to see if I'm one of the unlucky ones. (Well, I got MS, so my luck can't be all that good.)

I'll be seeing a new neuro (Dr. Leslie P. Weiner, at USC -- very big presence in research) in November, and plan to discuss with him the pros and cons of GA for PPMS. I'm collecting and reviewing info on Copaxone and PPMS.

I love this site, as people are well informed, dig deeply into the research, are freethinkers, and also compassionate! So much more my speed than other sites which are largely populated by people who never question their doctors and who mostly want online emotional support and social interaction. That's important to me, too, but much more important to me is figuring out what I can do about this situation. (Maybe that will change for me over the years, but for now at least I'm a proactive fighter.)

Thanks, people.

L4C
aka
JS

[agate]

If it's any comfort to you, I've been on Copaxone for over a year now (since June 2007) and so far haven't had so much as a twinge of an IPIR.

I've heard of Dr. Howard Weiner, also big in MS research. It's good that you have a doctor who's on top of things--or maybe not so good if he's so well-known that you have trouble getting an appointment with him. Hope that's not your situation!

[Longing4Cheese]

Yes, I've read Howard Weiner's book, Curing MS, and heard him speak at the same event where I heard Leslie P. Weiner (it was at the Nancy Davis Foundation "Roundtable" (actually several tiers of tables, facing a conference room with several hundred chairs set up; about 2/3 filled with audience members, by my estimate).

My sense is that Howard Weiner is thoroughly pharma-oriented, and, since Pharma doesn't have the kind of incentives to work on drugs for PPMS as they do for RRMS, they don't have much news for us PPMSers.

I am cautiously optimistic about Dr. Leslie P. Weiner.

[turtle_fi]

I had a reaction after about 5,5 months of use, it was just after the copa injection. no flushing and heart stuff, but breathing and sweating and feeling like the stuff is going around my circulation right after the injection. no blood came from the site, but in 2 days i noticed a big bruise of yellow color, so maybe it had bled inside. it was in stomach, and manually injected (like all i've had).

how can you check if there is blood? by pulling the syringe? but what if there is blood? what if something else comes to syringe? my MS nurse said that I must not go through skin twice with the same needle. Once I had to change the place since it hurt damn much to insert to that site, perhaps some nerve there.