confession: i have missed a shot every week

[meeegun]

since january. sometimes more. it all started when i was in australia and i did an injection (copaxone) on my right arm and hit the muscle. the pain was excruciating and then i developed a mild IPIR which was scary. since then, every time i inject my right arm it hurts really bad so i have been skipping it. and for awhile, i was missing shots because i was so tired/busy/etc. i have tried to be better about it so now i am just missing the right arm shot each week.

i talked to my neuro about how bad it hurts to inject my right arm and she said not to inject it. even though i know i can inject somewhere else (stomach perhaps) i still never do. not sure how to convince myself that i need to do this shot every night without fail.

[fishead]

meegun,
I was on copaxone (as my FIRST DMD). I remember that there were MANY sites I could use for injections. Please call the pharma company, and ask them to send you a chart of all injection sites you can use.

[twisterred]

Hi M,

Glad you are posting about this.
First, skip your arms.. never again, OK?

Now about your shot. Do you know how Copaxone works?
In the simplest way, it's a decoy that your body eats instead of your own myelin.
It's a vey good thing you are doing; but keep in mind it takes the body a looonnnng time to get used to it.
Don't give up though.

Do yourself a favor and get into a routine that you can do.
For instance, give yourself your Copaxone shot just before bushing your teeth at night.

I "shoot up" before brushing my teeth in the daytime, which guarantees I WILL inject.

Copaxone likes any area of the body that has fatty tissue.
These areas react less than areas with more muscle, especially in the beginning months (7-12).
Reactions and bumps should lessen over time.

Think about the good this medicine is doing for you in the inside. The outside won't look so pretty for a while, but don't worry about it.

Injecting manually doesn't hurt as much as the autoject from what I've read.
I was taught "old school" and inject manually each day.

I also have had a few mild and a couple tough IPIRs.
They are spooky, but they've taught me to stay calm and give my body time to adjust to this medication.

Be your best coach and keep thinking about the good you are doing Meegun!

[Marleigh123]

Dear Meeegun,
Please don't beat yourself up. You're doing your best!!
And hey, my doctor has me on a M-W-F Copaxone dosage. (crazy, right?!?) My neuro runs the MS Clinic at Beth israel in Boston, and is well versed in studies and assure me that it is as effective as daily. Please don't go on my post alone, but ask your neuro about this. (or at least find comfort in knowing doing your best is still much more frequent than MY Rx)
Oh, and I no longer do my arms either. There isn't enough fat on there and my neuro knows there are enough spots on my waist and thighs.

[pjsSissy70]

I too am on copaxone. I have missed a few doses myself. I cant shoot at all on my right side. I have IPIR anywhere on my right side. So Im limited to my left side. I NEVER do my arm. Thats too much pain and burning for me to handle in my arm. I also dont do the top of my leg. I talked to my neuro and got his stamp of approval for doing the side of my leg and my bum. Gives me alot more areas to inject. Talk to your neuro, maybe she/he can ok different areas for you. Good luck to you

[meeegun]

further confession: i have missed my shot for the past three nights.



guess i'm going through a rough patch. part of me feels like the shot is pointless anyways, so why bother? thanks for the pep talks and suggestions. my motivation is severely lacking right now. i just get such mixed information about efficacy and its hard for me to continue shooting myself up with something that causes me discomfort, inconvenience, has an unknown benefit, and an exorbitant cost. i guess i just don't believe that it is really doing anything and that makes it really hard.

[Kenmore]

missed a shot

I missed a shot for 4 months.

[erica1000]

meegun- I understand how what you are going thru. Years ago I was taking Beta and then Avonex. I had the same thoughts as you and discussed them with my doctor.

Ultimately I stopped because mentally I was not in a good place and not being able to see benefits just did not make sense to me. My neuro at the time did not push the issue and I'm sure that was not the right move on either of our parts but we will really never know.

Now I have a new doctor and great relationship with him and his staff.

With the Copaxone I had to give up the arms long ago because there was just too much pain and it was the hardest area to reach.

For my routine, I made it part of my regular grooming. When I get ready to shower, I place it on the vanity (can't comb my hair without seeing it). As soon as I am out of the shower, I give my self my injection.

You are not the only one that has missed shots or that ponders why or of they should even continue. I know it's rough but don't beat yourself up about it.


Marleigh123 - About a year ago my doctor also moved me to M-W-F injections. Like you I thought it was a crazy idea, but this has been working great for me and so far no new issues. He is really excited about BG-12 and wants to move me to it when it is available.

[jbell2435]

I've been on Copaxone just over 2 months now and the last two shots to the arms were awful! I'm glad you posted this...I try to rotate on the arms but the last two were on the underside/side just above the elbow.

I had large (3-5") welts, redness, heat, and itching like crazy.

I'm going to try to stay at the top of the arm, but if this continues, I will be skipping them all together, not worth the discomfort.

I agree with previous post that the meds are trying to decoy our symptoms, I am just hoping they are succeeding!!

Good luck.

[Cat Mom]

It's surprizing how many of us skip the arms. It doesn't seem to matter if injecting manually or using auto injector and also doesn't matter if self injecting or having someone inject for us. I'm sure we are also different sizes, ages, sex, etc. so there must be something that arms don't like about Copax. Huh!

If you can stomach 1 more "cheer" for Copax.... Dx in 2005, when put on Rebif had numerous flares, lived on steroids, MS got worse.

Then... Began Copax in 2007. Had 1 flare in Jan/08 and another milder one (still needed IV steroids) in Jan/09 and no big flares since. No new lesions since these flares and no MS progression.

If you would have asked me back then if I ever thought I would feel like I do now, I would have never guessed. Now there is permanent damage, like my left optic nerve, but the damage was done pre-Copax.

I don't mean to sound preachy or like a Copax cheerleader but I just thought I'd give some of you who are sticking with it a positive story about it.

And the moral of the story is... Since I don't inject into my arms, it must still work by using the other inject sites.

[beadyeyes]

I so sorry that some of you are having difficulty with your Copaxone shots.

I have been on Copaxone from the start of my dx, 11 years ago.

When I started I was advised to ice the area prior to injecting and ice afterwards...I never knew that the protocol was changed until reading it here a few days ago.

I inject every night before bed and do arms, legs, hips and abdomen...I call my Copaxone Macarena...I have been happy on Copaxone...no side effects that I haven't been able to handle easily, except one intense IPIR that sent me to ER via ambulance, thinking I was having a heart attack.
When I feel the burning, itching, hard lumps, etc I think about the alternative reactions experienced on interferon treatments...but I have also found myself asking why am I doing this and then get complacent about taking my shots as prescribed...I have skipped several days in a row at times and subconciously I think it is a test to see if something is going to happen.

I haven't been paying much attention of late to new developments since I have been relatively flare free for the past 6 years and happy with the treatment I've been on.

However, I just had a new MRI last month that showed new activity. I have an appt. scheduled to discuss with my new neuro. His assistant suggests that there will possibly be a recommendation to change or supplement the Copaxone...more shall be revealed!

[WendyRochet]

Fat...

I shoot Rebif I find the fattest areas of my body are the least painful, I've never done my arms

Plus I take a big grip of my tissue and this helps a lot too, almost squishing as much fat as I can, not squeezing it tight but really supporting all I got that's fleshy tissue to inject into

It's ok to skip an area just log where ur injecting so you don't hit the same spot back to back, good luck, hang tough you'll get it

The nerves just make it worse so breath and realize were all here for you your not alone

Some of us have much worse things than shots to deal with.
Don't give up