NeuroTalk Support Groups - Copaxone site reactions...some questions/concerns

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- - Copaxone site reactions...some questions/concerns (https://www.neurotalk.org/multiple-sclerosis/67257-copaxone-site-reactions-questions-concerns.html)

I dont do my arms.

I have had my dad (a nurse) do the shot in my arms for me, maybe 5 times...it's a bit too painful there...and when I feel the need to branch out into other areas, he's done the shot in my butt for me (actually, the back of my upper hip, seems to be more nice fatty areas there)

I need to have my dad do some of my shots for me the next few weeks...I've been doing the stomach too much, and my thighs have been really painful. Time to branch out into less poked into territory.

Quote:

Originally Posted by dmplaura (Post 432841)

If you don't inject the arms, where DO you inject?

I can handle the spasms. I'm only half a year into Copaxone. They last about 20-30 minutes and then the arm calms down.

Unless hitting the muscle when injecting is a bad thing, then I'll have to explore other options. :cool:

I do my stomach ( left and right sides), my hips and thighs and then start over in different spots within these same sites so that I'm not injecting into the same spots.

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

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.

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.

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

ok, that is either A. allergic reaction, or B. Cellulitis, and C. you NEED to see an MD about that.

some folks need a short course of oral steriods to get them off the ground with the stuff. They take a tiny amount everyday to keep them from over reaction to the ingredients.

please seek medical care for that.

My site reaction red marks have generally been larger than Lady's, every time I inject in my thighs. I don't even try my arms or hips anymore; it hurts too much. And, I've finally quit trying my thighs too.

And, I've been on an oral steroid taper since Sept. Just got off.

I just hate Copaxone. That's all.

~ Faith

Everyone's so unique.

The 'hips' (I call them the bum cheeks) are my easiest place to inject. I go right for the fleshy fatty area. I don't follow the Copaxone 'grid' really that strictly for the area, because I find that the grid was not where I have the most padding. No problems since I started winging it.

My arms are the worst now, namely my left arm (I have my muscle spasm... it seems I have muscle spasms no matter where/how I inject there) and my stomach because the burn after is the most intense of any of the areas I do my shots.

I'll settle for the few minutes of pain every day over the idea of my disease potentially progressing quicker without this medication, but I also have not seen the allergic reaction side of the shots, or IPIR. I've been lucky.

For three and a half years on Copaxone I had a reaction no bigger than a quarter and it disappeared in ten minutes. No problems, ever.

I stopped for two years.

I went on it again in July 2007. This is the reaction that occurred, in the picture of my legs. My arms, my hips and all sites for 14 shots. My Neuro sent me to Allergist, Immunologists, Vascular specialist, Rheumatologist, Dermatologist, every OLOGIST she could send me to.

No one knew why this happened. They all tested it. I did take some allergy meds and used some cream from the skin doctor. It finally went away.

I called TEVA Pharma who transferred me to their direct drug manufacturer Pharmacy plant. I spoke to their Pharmacist for Copaxone. They told me they changed the Mannitol, it is made now from corn-sugar alcohol, from China.

I am allergic to corn. I was injecting a substance that I had a known allergy to. :eek:

No one ever said, or wrote, on the Copaxone label or insert, what the Mannitol was made from. They just say, if you are allergic to Copaxone or Mannitol, then don't use this product. They don't say what is in the Mannitol.

I think it was made from beets, or pomegranates originally, but don't hold me to that. She didn't know what they used in prior years. She just had the formula for this year 2007/8.

I haven't been on it since that July, but went to so many doctors. I thought it would be a piece of cake like it was before.

So if you are not allergic to corn or Mannitol in it's many forms (Google it) then you should not have any problem of bad reactions with it. Sometimes the drug in fine and the filler is the problem.

Or in this case the Mannitol was the drug for the method of action used. I believe it shrinks the epithelial cells to improve drug delivery across epithelial barriers. It opens the blood-brain barrier to allow Copaxone to enter. JMO and thoughts on this matter.:)

I felt the drug work originally in about 5 months. It slowed my 4 a year relapses to 2 a year. Then it stopped working for me as it should, and allowed an opportunist infection to get through it's surveillance system. I had to stop the "C" and deal with that one.:rolleyes: in 2006.
That's my story and I'm sticking to it. :)
Lady (being candid)