Suggestions for starting copaxone?

[CaraSam]

Hello,
I was recently diagnosed with MS and prescribed copaxone. The nurse from Shared Solutions is coming on Thursday morning to show me how to do the injections, and I'm a bit nervous. (Ok, a lot nervous- but a big part of that is starting treatment makes the diagnosis real, which is pretty darn scary.)

I've read through some of the threads on here and already picked up arnica gel and a good cool pack (already have a heating pad and plenty of Benadryl) -- are there any other things I should have on hand to help with the injection process or managing itchiness, pain, etc afterward?

I've also read that some people don't mind the autoject thing, but others find it too harsh and tolerate manual injections better. Is there one that's better to start with? Are the nurses able to teach you both methods in one visit, or will I need to start with one and request another teaching session if I'd like to try the other way? Anything I should be sure to ask the nurse about?

If anyone has suggestions on ways to adjust to the injection stuff or anything, I'd welcome any input. I'm still rather daunted by all of this.

Thanks so much!!

[artteacher]

First of all, Welcome to the world of MS. Sorry, you have been inducted into this club.

I started on Copaxone about a year ago. I was like you and really nervous about starting it. I found I got worked up over it for no reason. So my first suggestion is to relax. It helped me to remember that many people take injectable drugs and they get through it.

I use the autoinjector for my shots. I felt that there would be more variables with manual injections. I feel that there is less thinking when using the autoinjector. But this is just my opinion.

The nurse I had from Shared Solutions that was great in training me. She showed both methods of injection. She had me use saline solution into a squeeze ball. Then I did the actual injection to myself as she talked through the steps. I am going to guess that all the nurses have gone through some type of training on how to teach us how to do this. They also have all the supplies you need-alcohol wipes, heat/cold pack, instruction mat, etc.

I am sure you will do just fine

[rhavin42]

I know the feelings you are going through. I was dx at the end of last year and started Copaxone in January. I had the nurse come out and walk me through using the autoinjector. I was not comfortable attempting to do manual injections, and there are some spots (like the backs of your upper arms) that I don't see how it's possible to do manual injections there.

For the first three months I got some site reactions (small red bump and itching) I tried the whole heating before hand, and icing afterward, however I found that it didn't really help much. After about the 3 month mark it looks like my body got used to the medicine and now I hardly have any site reactions. I also stopped heating and icing, now I just do my injection and try to forget about it.

Also I tried adjusting the autoinjector depth for each location and found that some spots I was going to shallow, and that seemed to increase the site reactions. Now I just leave the autoinjector set at a 7 for all locations and that seems to be working well for me. You will have to experiment with your body to find out what works for you. At some point you will go too deep and hit muscle, I did that once by injecting too close to my elbow. My entire arm cramped up and hurt like the dickens for a couple of hours.

Some people have tried using a rubber band to release the safety switch on the autoinjector so they don't have to push so hard on their injection site. I tried this and found that it was causing the needle to not go in far enough causing more site reactions, so now I apply just enough pressure to release the safety switch and inject.

Basically it's alot of trial and error experimenting with your body and this medicine to find out what works for you specifically.

I hope some of this has helped you and good luck and stay strong. I was super nervous my first few times injecting especially after reading all kinds of horror stories on the internet about itching, lipography, IPIRs, and softball sized lumps. Thankfully my body seems to be tolerating the medicine extremely well and I hope that yours does too.

[Boymom123]

A few ideas

First, welcome to this club that none of us wanted to be in I too am newly diagnosed (April 7, 2015) and have been on the Copaxone 40 for 8 weeks (I'm in my 9th now). I asked all of the same questions you have and it's truly different for everyone. Here is what I can tell you. I have only injected in my stomach, thighs and hips (it's summertime and I don't want to deal with anything on my arms). I use the Autoject but have done manual as well. The important thing with the Autoject is to get the correct depth to minimize welts. I am now using Autoject Depth 8 on my hips and stomach. I get a little redness after and maybe a bit of soreness the next day, but that is it. My thighs are a different story and I am having the nurse to my house again tonite to try and figure out what is going on. Don't be afraid to try different depths for the injections to see what works for you. I got welts everywhere in the beginning but that is no longer an issue for me anywhere except my thighs. The injection burns for a few minutes after, but really it doesn't hurt much at all. My nurse told me to take a week supply of Copaxone out of the fridge at a time and keep in a dark place. I use the Autoject bag to keep them in. Good luck and don't be afraid to ask the nurse to come back out if you are having issues!

[lkearbey]

Ditto what artteacher said. The training nurse will train you with both injection methods. I have found the autoinjector is better for me. Manual injection is a little more comfortable when you can inject the fluid slower, but my hands aren't steady enough. The needle moves around too much and I end up with big bruises injecting manually. I've also found from talking to others that everyone is different. Take your time, try a few different things, and see what works best for you. It will take a while to figure it all out, be patient with yourself!

Your training nurse will probably tell you this, but just in case, call Shared Solutions after you see the training nurse, they have a bunch of goodies they can send you. They will send alcohol swabs, a travel pack (highly recommend this), a lock box if you need to keep your medication secured, a syringe handle for manual injecting, cooling scarves... that's just what I can remember off the top of my head! Everyone at Shared Solutions has been really great.

Good luck!!

[CaraSam]

Thank you all for your reassurance and suggestions!! I'm still anxious about tomorrow, but you've helped me feel a little better about things -- I appreciate it very much!!

[rhavin42]

Oh, a few other things to help you get started. Take notes of the steps required to use the autoinject. You think you will remember everything but the first time you sit down to do it by yourself you will have no clue what you were supposed to do. At least that's how I was.

I wrote down step by step instructions e.g.
1. Wash hands
2. Prep injection area with alcohol pad
3. Set depth
4. Open autoinject
5. Engage autoject spring
6. Load needle
7. Screw autoinject together
8. Remove red cap
9. Inject

Shared solutions also has an app to help you track injections. The app really sucked when it first came out, but they have made some improvements to it recently that make it useable. You can set it up to give you reminders on injection days, along with your site rotation so you don't have to keep track of it all with pen and paper.

[emwojcik]

Thoughts on Copaxone

I'm sorry to hear that you have joined all of us, but I hope your training went well. I've been on Copaxone since November 2013. Everyone here has great advice--here's a couple more cents to throw in:

- I'm too much of a wuss to manually inject. I found myself panicking when I tried, so I use Autoinject. What I suffer in a little bruising more than makes up for the absence of fear.

- My settings are pretty low because I discovered, for me at least, that one side effect has been weight loss. Not extreme, but about 8 pounds or so. I asked my doc about it and she said she hadn't heard of that, but that "people don't report side effects that they like." So that may happen to you, which is to say you may need to adjust to shallower depths in a few months, to avoid bruising.

- I decided early on not to inject in my stomach. It hurts and I wanted to have one part of my body that wasn't bruise-y. If you decide to skip an area, it's OK. Just wanted to say that out loud.

- I found doing the injection before bed was really helpful (instead of mornings). I can do it, then curl up and feel warm and comfortable while riding out the after-sting (which only lasts a couple of minutes). That may not work for you, but has made the whole thing more bearable overall for me.

- And finally, my husband does most of my injections for me. I showed him how, and it may sound weird, but it has really helped him (and me) deal with this diagnosis. He feels like he's helping me take care of myself--and there are times when I really don't want to give myself the shot, so him doing it for me is really helpful. And it gives him some involvement with this disease, which can be so alienating and isolating. I don't know if there's anyone like that for you, but if there is, I really recommend at least talking about it with them. MS can make us and our partners feel so helpless and angry, and this weird ritual, even though it's scary, helps us (at least) feel like we're fighting this together.

Hope it goes well for you--and that it works!

[CaraSam]

Again, thank you all for your helpfulness!! Y'all are awesome ((hugs))

My first injection on Thursday actually went quite well. We did it in my stomach (and I'm glad we did- I suspect I would've been too nervous to try that one on my own) and I was able to tolerate it much better than I had anticipated. I've done another injection on my own (upper right arm) since then that also went well, but I did have much more of a reaction there. But, hopefully all the reactions will calm down over time.

emwojcik -- although the abdominal injection did go okay for me, I will likely be avoiding the upper left arm area due to pre-existing shoulder issues that are very easily aggravated. I mentioned this to the Shared Solutions nurse who called me today for follow-up, and she said that my doctor may be able to give me an alternate area to inject so that I still have seven (or more) areas to rotate between, but that even if they don't, I should still be okay. I will definitely be discussing it with my doctor when I see her!

Again, thanks so much, everyone!!

[Boymom123]

CaraSam

Are you on the 20mg/7 day or 40mg/3 day prescription? If you are on the 7 day, and you have the option, you may want to speak to your doctor about possibly going to the 3x per week dose. It cuts down on the worry about having enough injection sites. For me, I inject only in my stomach, hips and thighs. I may try the arms in the fall/winter to give my legs a break, but I wear sleeveless too often to want to deal with that now Just an idea. I also inject at night...just allows me to relax after and not have to worry about running around.

[emc1]

My Copaxone Experience

I used daily Copaxone for 7 years and just changed to the Copaxone 40mg 3 months ago. Honestly my injection site reactions are exactly the same with the the 40mg. My site reactions have never lessened, I get a ping pong ball sized lump that last about 3 days, red painful site immediately. I have tried every remedy there is with no relief. I am a nurse and give myself the manual injections. I agree with the other replies, just relax. I find that my thighs and back of arms cause the least amount of pain. I hold my arm above my head and inject that way to back of arm site.
I just recently experienced my first severe side effect, I believe I injected into a vein, within minutes I had chest tightness, flushing and the feeling of not being able to breath, as a nurse I was able to talk myself through it and knew that it would quickly pass. After about 5 minutes it was gone. How I managed to go all these years without that experience is beyond me. Good luck to you.