DMS: HOW DO I CHOOSE?
I do not recall having a “say” in my first DMS. I was SO sick. I couldn’t walk; could barely talk; drinking from a glass was impossible, and I could not feed myself. The initial thought was I had suffered a stroke.
Fortunately, my team of doctors belonged to a teaching hospital known for aggressive neurological studies. After being Cat-scanned, MRI’d, and lumbar punctured, they deemed multiple sclerosis the culprit.
To this day, I am grateful for the speedy diagnosis. There are so many horror stories out there.
THE NEEDLE
Having little to no knowledge of multiple sclerosis, I followed any instructions for my treatment. Beta Seron became my drug, and I self-injected it for many years. When I received my first auto-injector, I was beside myself with glee. No longer did I dread the personal torture of taking “the plunge” on assigned days. And then, I received a colorful, fashion-forward injector, and I felt like Christmas came early. Enduring this disease means finding a celebration anywhere I could get it.
THE PILL
When introduced to oral DMS, I said YES, YES, YES! A pill? There was a pill to treat MS? Put me in, coach! I could barely contain my excitement and COULD NOT WAIT to receive my first dosage of Tecfidera.
Like so many medications, transitioning into a new prescription routine requires patience and I am normally a patient person. Three weeks into this new MS journey, my patience ended. Maybe I bowed out too early, but I could no longer tolerate the side effects. I practically lived in the bathroom and couldn’t leave my house. Which meant going to work wasn't an option. I lost 14 pounds I didn’t have to lose. I felt like a loser. I missed my needle.
BACK TO THE NEEDLE
So, MS answered the call, and I resumed shooting up. This time with Copaxone. In comparing the side effects of this drug, it pretty much ran neck and neck with Beta Seron. The two treatments kind of balanced one another EXCEPT Copaxone injection sites were far more painful and near the end of my time with this drug, my pin cushion body held no more room for another plunge. Bruised, blotched, and badgered, I decided to take a break.
ALTERNATIVE TREATMENTS
Not everyone living with the MonSter subjected themselves to a DMS. It was time for me to research and re-evaluate. Eastern medicine looked intriguing. A diet change couldn’t hurt. Maybe adding CBD to my daily routine?
Oh, I read. I studied. I discussed these alternative approaches with my neuro and fellow MS Warriors. I experimented.
And finally, I was convinced that a verified treatment was necessary.
BACK TO THE PILL
Starting my Gilenya experience was interesting. Required to spend the day under close observation when I took the first dose was a commitment. I went to the neurology clinic armed with a deck of cards, snacks, and my mother for company. Every hour, my vitals got checked and the day ended with another bloodletting. (Sorry, blood test.)
When it was evident that Gilenya was not my enemy, I took my starter pack and went home, confident that I had found my new forever friend.
For three years I religiously took Gilenya.
And then…
Test results revealed some possibly alarming activity in blood count levels. That’s when it was recommended to see an MS specialist. YES!
Dr. Ward and I had an extremely informative adult conversation about my MS. She agreed that Gilenya was not the treatment for me and gave me copies of her top three suggestions for me.
MY FINAL NEEDLE?
Kesimpta is a once-a-month self-injection. I stopped taking Gilenya a month ago in preparation fortis new treatment. More bloodwork and an MRI are required before beginning this new DMS. When I am cleared to begin this treatment, it is with a rather aggressive introduction. I will inject once a week for three weeks before skipping a week and beginning a monthly regime.
I read the potential side effects and; yes, they are frightening, but no more than all the other chemicals I’ve subjected my body to. That’s the thing with the MonSter. Once diagnosed, we are living, breathing guinea pigs. The treatment for Multiple Sclerosis is a gamble. I hope Kesimpta works forme. I really do.
I committed years ago to find a workable path in living with MS. I exercise. I try to eat well. I experiment. I refuse to allow my companion to defeat me.
COMMERCIALS AND MS TREATMENTS
There are SO MANY options out there. You’ve probably seen the Ocrevus commercials on television. You know, the smiling MS Warriors flashing the peace sign? They are advertising the fact that Ocrevus is an infusion administered only twice a year. Ocrevus was my neuro's second choice as a new MS treatment.
The actors in the Ocrevus commercials appear happy with the treatment.
I was excited about Tecfidera because it's a pill AND the commercials portrayed a new life of mobility and freedom.
Kesimpta is also represented as THE RIGHT CHOICE for people living with MS.
It’s easy to fall for the hope these advertisements offer. Ultimately, chosen treatment results from open dialogue between you and your health advisers.
We’re all different.
Do your research. Make careful decisions. Don’t give up.
Lisa, Lady With the Cane
