Sharing my experience with Copaxone shots, after nine months of using them. This was written one day before my I gave myself my last shot. This article will empower you with the knowledge you need to seize each day and live life to the fullest, even with Copaxone. Let’s dive in!
Republished and rewritten for MS Awareness Month
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Table of contents
What is Copaxone?
Copaxone is what they call a “disease modifying medication” which should slow down the multiple sclerosis. It is an injectable, so I have to give myself shots three times a week.
Shots? That Sounds Scary! And Painful?
Let us just say that I was not thrilled about them, but I was happy that I was doing something to fight my MS. I want to share my experience so that others can see it is no big deal, even if it feels like that in the beginning.
Self-injector and Home Visit
When I started Copaxone, the company enrolled me in a program which included a home visit by a nurse to teach me how to do the injections. She provided me with lots of information and witnessed my first self-injection. There always was phone support available.
Although I was scared and freaked out about the injections, it turned out not to be a big deal and quickly became routine and not scary at all anymore. Mostly it was annoying but hey, I was fighting my MS monster.
Since you have to rotate injection spots, I sometimes needed help from my husband, but most of the spots I could do myself. The home visit included a booklet in which I could keep track of shot locations and reactions.
Because I didn’t want MS holding me back from travel, I soon learned how to travel with copaxone.
My Travels with Copaxone
First, we traveled to Hawai’i and I injected myself on our balcony, watching the whales swim by. Next, we went to Costa Rica and I injected myself watching “our” parakeets in the palm trees. A few months later, we flew to Amsterdam and I injected myself on our hotel balcony watching a blue heron fly over. While I hated every shot, they also filled me with hope that my immune system would stop damaging my nervous system.
Was Copaxone Working For Me?
Since my nervous system is not really visible to the naked eye, the neurologist orders regular MRIs to check the progression of my MS. The disease damages my myelin and causes lesions, which are visible on the MRI slides. This is one of the best ways to see what is going on.
The copaxone shots plant a kind of decoy in the body and they think that the immune system goes for these decoys instead of attacking myelin. For me, the shots would hurt and show redness, which I saw as “proof” that my immune system was attacking them. A few days later the sites would get really itchy, another “proof” that my immune system was being distracted from my nerves. Of course I loved the idea that my immune system was so easily distracted!
Nope, Time To Switch Medications
By distracting my immune system, the copaxone should have prevented new lesions from happening. So I had yet another MRI to check whether the Copaxone was doing its job. It was not. Instead, new lesions were rearing their ugly heads. Darn! That was disappointing. All these shots and no good results. We decided it was time to switch medication.
Medication after Copaxone Shots were unsuccesful
We decided to go with Gilenya, which is an oral, once a day medication. Hopefully it will be more successful than the copaxone was. I feel good that we tried the copaxone, but I also have to admit that I won’t miss the regular injections. However much I was visualizing them helping me, I still detested them.
So after my last shot, we went to Maine to celebrate. (OK, actually we are here to oversee some electric work being done, but I will count it as a celebration anyway) We saw egrets, kingfishers, a bluebird, a cardinal, and even the same blue heron we saw in Amsterdam! Or maybe it was her cousin.
Conclusion about Copaxone Shots
We found one medication that does not work, luckily there are other options. I am happy we tried copaxone, because it has the least side effects and it is one of the older disease modifying treatments, so there is lots of empirical data on its effectiveness. And I started Gilenya, which worked better for me. Meanwhile I will keep fighting the dragons of multiple sclerosis by hooping, doing yoga, and swimming. (preferably in a nice sunny climate 😀 )
Related Links
- Travel with Copaxone. Ten tips to travel the world with copaxone
- Hiking Diamond Head with multiple sclerosis. It wasn’t easy, but I did this hike on Hawai’i!
- Yoga for the win! How I am learning to stand on one leg, fighting my MS
- Manoa Falls hike. I failed to reach the falls, but I rocked the birding!
- Hoping for a Boring Day. Spending a day in the hospital to take my first dose of gilenya. I passed and am officially on Gilenya now!
Pin Copaxone Shots: My Experience
Comments
28 responses to “LivingWithMS: How To Make Your Copaxone Shots An Effective Experience”
Go Karen!!! Onward in the fight girl!
Thank you, Jody! <3
Having MS myself, I applaud you for making yourself a priority! Stay strong!!
Thank you, Holly! So sorry to hear you are dealing with MS too! Hope you take good care of yourself also!
I love that you are taking your fight against MS into your own hands! Keep going 🙂 I hope you have better results with your new medicine 🙂
Thank you, undoubtedlyYoung! Tomorrow I will find out! I am half scared, half excited, but totally ready to start my new plan of attack 😀
Excellent post! You explain how the shots work to help much better than my neurologist ever did!
Thank you, walkamyelinmyshoes! Sorry to hear your neurologist wasn’t as helpful in explaining the workings of the copaxone. I think in my case it helped that my husband was with me and asked the right questions about the workings of copaxone. Good luck @ your MS fight!
Are you on copaxone too? How does / did it work for you?
No I’m not on a DMT. LDN and lifestyle changes seem to be working for me.
Great! Can I ask you what LDN is? Glad that you found something that is working for you!
Low-dose Naltrexone. Google LDN for more info, it’s amazing for all sorts of things, cheap and virtually no side effects.
Thanks! Will check it out. I had never heard of it.
Good luck in your journey, Karen! I hope the new medication works much better for you and that you don’t have to go back to the injections!
All the best!
Thank you, Layna! I passed the trial today, so now I can officially take the gilenya. It will be a while before we know whether it works. Onward and upwards!
I love your positivity! I hope your new medication has better results for you.
Thank you, cici. I guess I might as well be positive about things, because it’s easier than to whine about it. Not that I don’t do my share of whining also sometimes 😀
Keep fighting – I hope the new medication works better for you. I’ve just started pilates recently after having major bowel surgery 2 months ago and finding it’s really helping already. Good luck with your journey.
Thank you, opposite tourists. Glad that pilates is working so well for you and good luck on recovering from your surgery!!!!
Having had many medications not work, I know the frustration that this can cause. I totally admire your positive outlook. That will carry you far in your treatment. I really hope this new med works!
Thanks, frozen mind! Yup, it is frustrating, but on the other hand, I wouldn’t have known without trying. I started gilenya yesterday, so in another six months or so I will find out whether it worked. Unless the side effects get to be too much, but I will continue to be positive and visualize this working without too many side effects!
Hope that you did find a medication that does work for you!
We are still working on my meds.
Awwww, in that case, good luck! Hope you will find one that works soon! Hugs to you.l
It’s really inspiring that you don’t let it hold you back! I hope your next medication works for you, whatever that ends up being. It’s amazing that you still have a positive outlook x
Sophie
http://www.glowsteady.co.uk
Thank you, Sophie! Yeah, I hope the next mediation works better, but otherwise I can cherish the fact that at least I tried and found one that didn’t work. Meanwhile I will travel the world and write about my experiences doing that and dealing with the stupid MS 😀
THanks for stopping by and commenting!
Hope the new med is going to be The One!!! Where are you doing yoga? I met a really cool guy at the Symphony this past Saturday @The Hop, who thinks he’s figured out how to heal folks after he’s spent quite a lot of time studying the nervous system. I have his card as I am thinking about going to him. He’s done yoga and an incorporate it into his work. Carpe diem!
Thank you, Mardrey. The proof will be in the MRI pudding in a few months. Fingers crossed!
We do yoga at the CCBA on Wednesday afternoon and now have added pilates Monday afternoon.
Thanks for stopping by and commenting!
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