copaxone reaction

[willowwoman7]

Well, it looks like I can't take copaxone. I get injections site reactions the size of soft balls. Fire engine red and itchy for an entire week. What do you do when there is no DMD that you can take? That's the boat I'm in now. Copaxone was really my only hope as far as a dmd goes. I can't do the interferons because I also have lupus. (in lupus, your body makes interferon) I'm open to suggestions.

[sllowe]

Hey Girl,

What a perdicament. I have heard about this w/the Copax.  Does it mean you are allergic though? Or, is it mostly just what copax is known for, I'm just not so sure.

What are the nurses saying?

Wanted you to know I've read this and thinking about you...I'm sorry.

Hopefully the copax users will chime in soon.  

[Salamander2]

I hear ya sister!  Some people love that med.  But that med didn't love me ;) I am fair skinned, freckled (and strawberry red head as a young woman). I thought that's why my reactions were so bad.  You know, delicate skin, yadda, yadda.  But the reactions were REALLY bad, exactly like you describe.  I have said in other posts, it felt like I was injecting acid into my skin. Pain, pain, pain.

When I spoke with the nurses they were reluctant to say anything negative about the med.  They said "oh yes, site reactions are very common, be patient".  They recommended that I use a heating pad for 10 minutes, do the injection, use ice for 10 minutes.  THEN, the next morning while in the shower, massage the site to decrease the lump.  Riiiiight.  So much for a treatment that doesn't interfere with your life.  And adding insult to injury their recommendations didn't work.  
My last injection was 4 weeks ago and I can still feel marble size bumps everywhere.  

My Neuro said she couldn't see me living with those reactions forever.  Not to mention the loss of good injection sites from the lumps.  I gave up and I am starting on Tysabri tomorrow.  Some risks, but not as bad as the literature makes it sound.  This site has a good video on the Tysabri (Natalizumab)

Hope this helps.

Blessings,
Sally

[willowwoman7]

I can't take tysabri with all the autoimmune stuff I have....immune system screwed up so not recommended. Good luck on the tysabri!

[Heather3418]

The things you are describing with the use of Copaxone are very common in the beginning of it's use.  If there is any stinging, I would NOT use the alcohol wipes.  I would clean the area with plain soap and water and dry.  

I am now in month 14 of Copaxone use.  I still get welts and bumps.  Sometimes the lumps are the size of a quarter.  Some of them bruise.  But I can live with that, because I know that I am taking a drug that is helping me.  I figure the injection sites reactions are much less than having flu like side effects with one of the interferons.

Sometimes some of the shots burn, most of the time they do not.  It depends on whether I hit a little capillary while injecting.  If I do, I get a little blood droplet at the site and a bit of stinging.  Sometimes the stinging will last for hours and itch slightly.

The Copaxone people just started with a smaller size needle, to help with injection site rreactions.  The auto-injector can also, in my opnion cause a "slamming of the skin" and cause reactions.  I try to self inject when I can.  It's much, much better.

Hope this explains a little that Shared Solutions will not tell you.  I'll be honest with you, the tiny lumps are a side effect of injecting.  No one is looking at my body, except my mate and my doctor...who cares if I have little small lumps.  It's much better than the alternative....increased relapses from MS.

Heather

[Salamander2]

You are a better woman than I am.  You have given yourself, what? Over  400 injections?  There is no way I could tolerate that many painful shots.  I've got to hand it to you, I gave up way before that.

The Shared Solution nurses did say to let the alcohol evaporate and  I never did like the auto injector, so did all my shots without it (with the help of husband).  My point about the lumps, which started large was that after a month though they were smaller, they had still not absorbed into the underlying tissue.  

I would still be suffering with the Copaxone if there was nothing else available.  That is probably the only option for Willow.  But, maybe in time there will be something new.
Sally

[essdipity]

I'm glad I can tolerate Avonex, because my experience with Copaxone was a horror.

Not just huge lumps and bumps, and not just rashes, but hives. The itching was a nightmare. Nothing I tried helped. I'm all in favor of giving Copaxone a good effort, and I'm sure that for the big majority it becomes manageable. I'm just not part of the big majority. The Shared Solutions people will hover (figuratively) and cluck, but in the final analysis they're no help. I don't think they're even allowed to concede that sometimes it just doesn't work.

ess

[Deb61]

I had reactions like that in the beginning.  After a while, the reactions started to disappear.  Like Heather, I self-inject.  The AutoInject device makes a bigger welt.  

[Salamander2]

Exactly what I thought about the Shared Solutions nurses.  I have a friend on the Copaxone and she has been using it with success for 5 years.  She doesn't even bother to rotate sites anymore (!).  When it's good it's really good, but when it's bad it's awful!
Sally

[HVAC]

I can't go on the interferons and am about to go on copaxone for my first DMD. Should I skip the autoinject? I watched the happy DVD yesterday with all the "Real" MS patients speaking right of the TEVA script lol.
  Alex

[HVAC]

I forget everything. I read about a phase 4 clinical trial double blind using the anthisimine generic Zyrtec with copaxone to lessen injection site reactions. I all ready take it for allergies. Anyone else tried this?

[essdipity]

My suggestion is to do it the Shared Solutions way to begin with. Is a nurse coming out to your house? Follow all the rules, give it a go, and see how you do.

If that isn't satisfactory, move to plan B. Experiment with heat, icing, skipping the alcohol part, skipping the autoinject. This can get kind of confusing, so keep notes on what you did and how it worked.

There's an excellent chance that your reaction will be minimal, so don't anticipate the worst. Hope for the best, and remember that our forum members are here for support and advice.

ess

[willowwoman7]

I don't just get little bumps. I get welts the size of softballs, they turn fire engine red, burn and itch for a good 7 days. I've been on it for 16 months. I can't do it any longer. I also came up with a kidney stone, which if you read the info can be connected to copaxone. For some people, like Salamander said, when it's good, it's great but when it's bad, it's horrible. On top of this, they saw something on my liver that I went for CT scan for yesterday. I also saw warnings about the liver after I went off it. If you are doing good on it, I am sooo glad for you. Unfortunately, I can't use it any longer. I see my neuro next week and I don't know what he's going to do. He knows there's nothing else I can take with having lupus and kidney desease.  I'm sure he's going to put me on prescription D3 because my D levels are way low at 12.

For some people, the cure can be worse than the desease.