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12-24-2008, 04:22 PM | #1 | |||
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Member
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Copaxone has been a nightmare for me. I was on Betaseron for 5 years, with few side effects, and very tolerable site reactions. But, alas, it was not effective for me at decreasing fx and severity of flares.
So, I switched to Copaxone in Sept. I've had HUGE problems with site reactions. Burning, often for up to 30 minutes after injections; I use a cold pack and that helps a lot. In my abdomen, I also experience itching, but it doesn't seem to be as severe as what Debbie describes. I do get the swollen, red and warm, no matter where I inject, and, whether I inject manually, or with the auto-injector. Also, at every site other than my abdomen (thighs, arms, hips), I ache for 2-3 days after an injection, like a tetanus shot. The site hurts when I bump it, it hurts when I roll over in bed, etc., etc. I medicate w/ Ibuprofen every 3-6 hours, even through the night, for 2-3 days after an injection that is not in the abdomen. Suffice it to say, I just can't do this. I've talked to Shared Solutions people mulitple times over the phone. I try their tehnique suggestions. Nothing helps. Some of their suggestions make it worse. Finally, I requested that a nurse come out and re-train me. We did it in my thigh. We used the auto-inject; I've tried it both ways -- didn't use the auto-injector with Betaseron. She pinched some skin, and set the depth at a 4. My legs are somewhat thin, but I've also had trouble in my hips, which are not thin. So, I don't think that hitting muscle is the problem, at least not all of the time. Even then, with a nurse's diligent assistance, nothing changed. Still had pain for days, following thigh injection. Shared Solutions does not like patients to use sites more than once a week. So, I currently use 4 different sites in my abdomen, including above the belly button, and give injections only 4 times a week. Shared Solutions does not recommend using above the belly button, but I have lots of fat there, and Betaseron people say it's OK. So, because they are both sub-Q shots, I tend to believe it's OK. I inject only 4x per week because I am concerned about possible lypoatrophy (permanent dents in the skin) from over-use of the same sites, and don't want to be able to not use my abdomen as an injection site in the future. Will talk to my MS Specialist about that when I see her in January. I've read research that indicates that every other day Copaxone injections are just as effective as daily. And, yes, I know the study is a small sample. And, I know that Shared Solutions can't recommend anything that isn't their protocol, etc. But, I am simply no longer willing to hurt that much. I'd like to stay on Copaxone. I didn't like any of the other med options given to me at my most recent visit to my MS Specialist. But, I'll only stay on it if I can do it my way. 4 days a week has got to be better than nothing at all. ~ Faith
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aka MamaBug Symptoms since 01/2002; Dx with MS: 10/2003; Back in limbo, then re-dx w/ MS: 07/2008 Betaseron 11/2003-08/2008; Copaxone 09/2008-present Began receiving SSDI 11/2008 |
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12-24-2008, 05:06 PM | #2 | |||
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Grand Magnate
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i've been on C for almost 6 yrs and have done well.
it sounds like your site reactions are normal. i remember getting them for at least a yr. then it got a lot better. i use the autoject. you might have to play around with the depth setting to make sure you're getting into the sub Q fat area. i ended up going a bit deeper and it helped a lot. also try to ice the area after the injection for a few minutes. like a bag of frozen veggies or an ice pac. shared solutions will mail you an ice pac too. the next day you might try some gentle massage. or try some benadryl cream for the itching. i really think this will improve for you. hang in there.
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Judy trying to be New Skinny Butt ______________________ You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should. -------------------------------------- "DESIDERATA" by Max Ehrmann |
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12-25-2008, 09:05 AM | #3 | |||
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Elder
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I had HUGE lumps, itch and burn after the injection when I started Copaxone, and it was enough that I almost quit.
A wonderful nurse suggested that AFTER the injection, whether AI or not, doesnt matter. Take your Cotton ball, or paper towel, and PUSH straight down INTO the injection area. DONT RUB!!!! Copaxone is a sharp crystal style drug, and rubbing fractures the crystals. JUST FIRM pressure. Hold for 15 to 30 seconds. What this does is push the meds from the UPPER layer of fat, into the deeper layer of fat. This was like a miracle for me. The burning was MUCH less, the lump was all but gone the next day, and the itch really backed off. After 24 hours you can HAND massage the site with lotion or oil. After 48 you can machine massage. it dramatically helps those lumps go away. I pound them into butter. For the itch I took zyrtec at night for months. I also use benedryl cream after the injection. Copaxone while touted as being the one with the least side effects was the hardest for me to take. The lumps, the burn, the itch! I still cant use my arms. I kept smacking muscle. So, learning to shoot a bit more shallow and using the push method surely saved me from laying down that needle. I hope it helps you too. hang in there.
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RRMS 3/26/07 . Betaseron 5/18/07 . Elevated LFTs Beta DC 7/07 Copaxone 8/7/07 . . |
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12-27-2008, 04:47 AM | #4 | |||
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Senior Member
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This is a week old reaction to Copaxone.
I used it for 3 1/2 years with no problems. I had to stop it for other reasons. When I tried to use it again, they changed the ingredients in the Mannitol and I was allergic to it. The whole leg hurt, itched was swollen, burned, and nothing could touch it without severe pain. I had 14 of these in two weeks. I should have taken a picture the week prior to this. Lady Last edited by Lady; 01-13-2009 at 11:11 PM. |
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