Copaxone site reactions...some questions/concerns
 

Hi everybody,
I have been injecting Copaxone for just about 3 wks. now.
The first 2 weeks were okay...but this third week, I have lumps at injections sites after about a day and a half...then they start itching.
I have one on my thigh from Sunday that actually is swollen, red and warm.

Is this normal? the nurse at Shared Solutions told me that itching and small lumps are normal, but they really really itch, and are discolored.

Any info would be appreciated...

Is the discoloration bruise like? I used to get those when I injected too deeply into a site. :hug:

DebbieD - What you have described sounds normal. I used to get huge ones and man did they itch. The color varied from bright red to bluish/purplish. Overtime the site reactions have lessened.

Some tips that might help (or that have helped me):

Warm the area either by showering right before or with a warm wash cloth or hot pack.

Make sure the alcohol is completely dried before injecting.

Apply ice right after injecting and the next day (or that evening depending on when you inject).

You can massage the welts a day or so after the injection. This helps me quite a bit.

You are doing great, keep it up! :hug:

yeah, it's normal.

Are you using the autoject? Sometimes the site reactions are worse with the autoject. Can you manually inject...you can control the speed of the injection better if you do it manually. Plus, Copaxone is a skin irritant, and when using the autoject, sometimes it'll leak onto your skin during the injection, and that could be what's causing the itching.

Also, are you letting the alcohol from the wipees dry before you inject? If you get alcohol into the injection, that can make it hurt more.

I quit using the autoject and started to do them manually when I kept getting horrible site reactions that would get so itchy or would hurt so bad and the reaction sites wouldnt heal for over a week. The area of painful itchiness would lbe so large that it would make it really hard to rotate sites and inject every day. So, I started to do it manually, and it's a lot easier now and I dont have hugenormous site reactions anymore.

Mine sometimes really itch. I've had all types of discoloration, but it leads to a bruise after the initial color dies down. I've had perfectly executed shots to bleeders like nuts! Lumps that have lasted well over a week and were enormous!

If your reactions are too much (have you tried an allergy medication to see if perhaps this helps to reduce the itching?) then I'd give SS another call.

My new 'thing' with Copaxone is my left arm. No matter where I inject, high/low, forward/back, my arm spasms! :eek: This has been going on now ONLY at this location for 1.5 months - 2 months (I recorded it when it started happening in my trusty little book). Now I dread the arms! :p

Great more fun stuff to look forward to......... I am starting copax as soon as my insurance approves it.


The doctor told me yesterday that one of the side effects from C is that it causes the fat under your skin to harden sometimes. But that it will go away after a while

You're hitting muscle,Laura. I don't inject in my arms at all because I don't have enough subcutaneous tissue there. Tried one time and that was it. Hurt too bad.

Debbie, In my 9 years of experience on Copaxone, what you're experiencing was/is normal. As others have said manually injecting seems to help. The site reactions for me, lessened lots over time. I remember the Copaxone burning pretty bad early on.

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:

Laura - I stopped shooting in my legs a long time ago for that reason. I don't have enough fat there and kept hitting veins and such. Since I have more fat in my stomach I shoot there instead of my legs.

The arms are tricky as you have to position the arm to get as much fat there as possible as well as keep the arm relaxed so the muscles don't tense up. I actually use a pillow to position my arm and relax it on there. And, I go in at a 45 degree angle so that I am just getting under the skin. Seems to work for me.

I have tried the autoinjector twice. Never again. I like doing it myself and have less reactions when I do it myself.

I tried the AI on my arms before...

it was a nightmare. :eek:

I've only actually used the AI 4 times total?

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.

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.

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.

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)

Wow, that's some very important information about the corn component in the mannitol used... I had no clue, and I bet many others didn't either. :eek:

No wonder you were having such horrific reactions to it.

Hi Faith,
Nice to meet you.

This may help you understand what is in the Copaxone.

http://www.rxlist.com/copaxone-drug.htm#

COPAXONE® Injection is a clear, colorless to slightly yellow, sterile, non-pyrogenic solution for subcutaneous injection.

Each 1.0 mL of solution contains 20 mg of glatiramer acetate and 40 mg of mannitol, USP

The pH range of the solution is approximately 5.5 to 7.0. The biological activity of COPAXONE® is determined by its ability to block the induction of EAE in mice.


http://www.rxlist.com/copaxone-drug.htm#

Who should not use COPAXONE®?

COPAXONE® is not recommended for use in pregnancy. So, tell your doctor if you are pregnant or if you plan to become pregnant while taking this medicine.

Tell your doctor if you are nursing. It is not known if COPAXONE® is passed through the breast milk to the baby.

Do not use COPAXONE® if you are allergic to glatiramer acetate or mannitol.

That's all they say about Mannitol. NADA..nothing else.
Lady

You'd think Teva would explain better what's in the Copaxone and what Mannitol is. I know Copaxone is 4 naturally occurring amino acids which are supposed to mimic the components of what our myelin sheaths are made of. Copaxone is supposed to act as a decoy so that the T cells that attack our myelin go after the components of the Copaxone instead ( or mostly).

I don't even think Teva let us know that they had changed what's in Copaxone. I knew they had to put something different in it when it went from being that we had to mix it to pre-filled and now they say it can be kept out of refridgeration for up to one month. You know some preservative ( or more preservative ) had to be added to it for that to be possible.

I'm actually an "after the mix it yourself" member. I went to the pharmacy and asked for the syringes/mix, and was told they had switched to pre-filled only. So I'm not sure if it had JUST switched over in Canada (May 2008) or if it had been this way here for a long time.

We still don't have 29 gauge needles, grumble.

Mannitol is a sugar alcohol.

http://en.wikipedia.org/wiki/Mannitol

It's sometimes used to lower intracranial pressure for people with head injuries. (my dad told me about it when I first got the box of Copaxone. He's used it on patients with head injuries)

It's also a sweetener in breath mints and used as a sweetener for diabetic foods.

Oh, and it's also used as a laxative...(higher dosages of it than what's in the C)

Your right Erin. :) All of that is true.

But the Mannitol they are using now, is a sugar alcohol made from CORN. Sugar alcohol can be made from many fruits and vegetables.

In my case, I was injecting something I have a known allergy to. Corn.:(

So I am not saying Copaxone is a bad drug or not helping those who take it, I just said I can't take it anymore due to what is in it.:( Or I probably would still be on it.

It's like someone with a peanut allergy, injecting peanut oil.

My point is, I really wish all food and drugs could have a better description of what is in their products.

BTW, Copaxone's 4 amino acids are, glutamic acid, lysine, alanine and tyrosine ( Glatiramer acetate ) derived from a random polymer chain, of over 150 synthetic amino acids.

Basically, each injection could be a little different than the next, in the same box. I think that is why some shots give a reaction and some don't in the same month's supply. JMO:)
Lady

Lots of interesting info shared by all of you...thanks.
I'm still trying to adjust to all of this...still getting huge swollen areas on my thighs, my least favorite area to shoot. The sites get so itchy. I do rub benadryl on it, but it still itches.
I try everything that all of you have said...I sure hope they hurry up with the pill form!

I hope they never mix iodine into Copaxone. :eek:

Then you'd see me with massive lumps like the photograph. Eeeek.

I can't have Iodine either. :eek: In the contrast dye media, used for Cat Scans (not MRI's) or shellfish/seafood I get real bad. Many medications have it in it too. After my first CT scan, I needed a few shots of Epinephrine. I was itchy from head to toe, with massive hives.:eek:
Lady

What's wild is, I never realized (literally) until earlier this week when a coworker said "shellfish has iodine" why I broke out in hives and vomited after eating it.

Thankfully, the CTs I had did not contain contrast. I may never have made it to the MRI stage otherwise. :eek:

I agree Laura,
I would never have had a *good* MRI, if I couldn't have the GAD dye used for MRI's. It is different, shows more clearer images and if a lesion is active it will glow. As in a bright spot.
In case you wanted to know, just some odd facts FWIW.
The reason it glows is because when a lesion is active it is surrounded by fluid. The fluids rush to try to protect the nerve, as a blister protects a burned finger. This fluid is now inflammatory. Like the harmful, yet protective, fluid in an Arthritis knee.

Steroids reduce the fluid around the lesion, it can be seen on MRI after steroids, that the lesion is smaller. This may help it heal faster. Some think the fluid should not be reduced too quickly, as it protects and aids in healing. Others think it is injuring the nerve more when left alone. The jury is still out on that one. :)

It works just like a Steroid shot, Epidural, Caudal or Steroid Cocktail shot, to the neck, back, buttocks, shoulder or arm might do. It reduces fluid and inflammation to give the body part a chance to heal.

That's why I am glad MRI's use GAD dye and not shellfish Iodine, like CT scans do. You can have MRI's and CT's without dyes. A real good radioligist can read it the same.

Myelogram uses an okay dye too, which you can go right in to a CT Scan machine after it, and it works the same as CT dye or better.
Lady (rambling on again)

Hmmm...how long after beginning steroids does the inflammation get reduced at an active lesion site?
I began IVSM on 11/19, oral pred on 11/22, and had my new MRI on 11/26. Would my lesions have "dimmed" from the steroids by then? There were a couple of new lesions, but "very subtle" changes, according to the neuro. There was a questionable area in the cervical area of the spine that the radiologist felt was a new lesion, but the neuro felt that since I have a bulging disc in the area that the area wasn't a lesion but aggravation from the disc. The spine looked weird-like it had a knick in it; and somewhat cloudy. Hmmm....
Thanks for the added info...

Lady, good stuff. I'll have to ask my GP what they use in the MRIs here. She'd know. I am willing to bet it's the GAD contrast you mentioned. Definitely not iodine, or I think I would have reacted violently!

Hi Debbie,
Sorry I don't know the answer to that. I think it is very individual how steroids work. I have used oral ones, high and low dosages. I have used them for a longer amount of days at times also.

I have had IVSM for 10 days at 1000 mg a day with no oral taper, or 5 days of 1000 mg alternating the dose up and down for a few days to knock the crapola out of a bad relapse.:)

Sometimes I found the steroids helped right away, other times it took months. Sometimes they take their good old time and I see improvement 6 months down the road. At what point it takes away the inflammation, and how long it takes to help heal the lesion, is different from person to person and flare to flare.

I have been told that my MRI looked good at one point. I said great! The MS Specialist had said that was because you just had steroids within the last 6 months. What he meant I don't really know. If I asked him every question I wanted to ask Him I would be in the office a week. Maybe ask you doctor or radiologist when you see him/her.
Maybe someone else has that information. :)
Lady

Hi Laura,
I am pretty sure GAG (Gadolinium) is the only contrast media they use with MRI's. It is injected into the arm, after they take a few sequence pictures first, without the dye.

They really should wait at least 10 minutes before starting any more sequences to give the GAD a chance to get where it should be. Some don't do that. There is an MRI Protocol they should follow, some radiologists/doctors don't use the new protocol. :mad: It is specific for MS scanning.
Lady

Oh then GAG (odd name!). They did 45 min approx before sliding me out, injected the GAG, waited a bit and then imaged for another 20 min approx.