Free at Last!
Last updated: November 2023
Today's a big day for me. At my last appointment, my neurologist looked at me and said, "You know, I've been reading some news lately that suggests that stable patients your age can sometimes stop taking their DMT. Would you be interested in stopping Copaxone?"
Contemplating stopping my MS treatment due to my age
I was stunned! It's true, Copaxone (glatiramer acetate) has been a remarkable drug for me. I started injecting it daily in July 2000 at the ripe old age of 52, and in the 23 years that followed, I have had a few exacerbations, but nothing really noticeable since 2008, when I developed a remarkably stable diagnosis of bipolar disorder. The thought of not having to carefully put together an injection every day kind of threw me for a loop!
My history with Copaxone
When the drug was first introduced, patients got a little kit: a vial of white powder, a vial of purified water, a syringe, a great big needle and a tiny little needle. You drew the water out of the vial with the big needle, injected the water into the vial of powder with the big needle, and then shook the vial as hard as you could for a minute or so. You then unscrewed the big needle, inserted the tiny little needle, swabbed your skin with an alcohol wipe, stuck in the little tiny needle and PUSHED the needle into your skin, depressing the top of the syringe and dosing yourself with a correct amount of glatiramer acetate.
Limited side effects
ONCE, I had a side effect. I flushed, got very red and hot, panted a little, and then almost before I knew it, the side effect faded. It was identical to a hot flash. Now, I know other people have had unfortunate side effects from the injections. Certainly, my subcutaneous fat is VERY tired of getting shots.
Improved symptoms and less exacerbations
But after about a decade, I noticed something. I felt different. I wasn't having attacks every few months, and some of the symptoms I had developed were no longer a problem. To give you an example, I used to need a new prescription for my glasses about every six months. My eyes started to settle down and I only needed a new prescription every few years. And, I no longer needed prism in my prescription to correct the vergence dysfunction, another visual symptom. Prescriptions got MUCH less expensive!
One major exacerbation
There were other symptoms that got much less bothersome but I won't bore you with the list. I will say, that the ONE exacerbation that I had in 2008 was spectacular. I don't know if you've ever developed a mental illness as part of your disease course, but let me tell you, bipolar disorder is the thing to miss! Can you imagine having a manic episode that lasted for WEEKS? Think about being madly over caffeinated for all that time! Boy, did I get a lot done! But none of it was sleep, unfortunately.
My MS journey in a nutshell
Long story short, I kept living the life of someone who had spent the first 22 years of her MS life with fairly moderate symptoms, like a lot of sensory nonsense, severe repeat UTIs and difficulty voiding, and of course, a disintegrating gait, and (to-date) 45 years of constipation.That's a whole other story.
The smartest thing I ever did for my MS was taking up a life of supervised exercise, getting my weight under control, and learning to recognize tastes that trigger cravings. Getting reasonably fit was HUGE. It put my comorbidity of fibromyalgia into remission, and did wonders for my self-esteem.
And of course, injecting my medicine every day kind of put my fear of needles to the test. It's hard to work up horror at something you do every day. Especially when your cat watches you put the shot together and is particularly fascinated by watching it sink into various sites on my body.
A sense of control
But the biggest thing that Copaxone did for me was to give me HOPE. And hope is not just the thing with feathers that perches in the soul. The Copaxone injections gave me a sense of control that enabled me to put other measures of control into my daily life. Like exercise, like weight management, like becoming a moderator on this wonderful site.
Now we all know that MS doesn't like to let you feel like you are in control, but as years went by without any activity showing up on my MRIs and without additional symptoms joining the bandwagon, that hope started to feel a little like relaxation of the ceaseless vigilance that had been my way of life for decades.
My final treatment decision
This isn't a cure. MS may not be active in my system any more, but it sure has left me with scars that affect my way of living. Talk to me about the fatigue and the heat sensitivity AND the incontinence, and you could swear I had an active case. I don't. But I have a case that permits me in the twilight of my life to say "so long, and thanks for all the scars" to my daily, then thrice weekly shots.
Consider your options
If you are in your seventh decade with the disease, talk to your neurologist about the option of leaving your DMT behind. You never know what you can live without until you try it.
For all I know, I'll be without my shots for a year and have a genuine exacerbation and end up with a new symptom that's a permanent part of my armamentarium. But I'm willing to try!
Thanks for reading!
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