A Tale of One MS Patient: When You're Weary of Injections and Making Decisions
After taking myself off Copaxone - because after 25 years I grew weary of injecting sharp needles into my body - my journey of choosing my next MS medication lingers on. I know it was wrong to take myself off medication without my doctor’s consent. I advise others not to do the same. But this started when I was suffering from many months of painful gut issues while also grieving over the lingering illness that ultimately took my beloved father's life.
I couldn't rally myself
I couldn’t rally myself to inject another day, and soon I stopped altogether.
As a health advocate, you learn to do thorough research. Ask questions, speak to others, make a list of pros and cons. Along with my neurologist’s recommendations, that’s exactly what I did, and I drove myself absolutely crazy.
I went into overdrive
I went into overdrive, reading literature by pharmaceutical companies, reading articles from trusted websites and asking peers in the MS community.
I can clearly see my next birthday and it’s a nice, round number. The hair thinning I noticed in my thick curly hair was upsetting but not surprising. One of the side effects of Aubagio is thinning of the hair. To me, that’s one checkmark against taking it. I also noticed no one I spoke to took the drug and I wondered why.
Ocrevus is a biannual infusion and is the new kid on the block. It’s an exciting addition to the growing list of FDA approved medicines for MS and the first one available for progressive types of the disease. The infusion itself, meaning another needle being stuck in my arm for several hours, doesn’t sit well with me. One checkmark against it.
Gilenya, another oral, lists two possible side effects of stomach pain and diarrhea, two issues I’ve been suffering from for over a year. Do I want to add more pain to my gut? One checkmark against it.
Weighing pros and cons
As I weighed the pros and cons of each I also wished I could disappear and land in Utopia. Since my wish didn’t come true, I knew I needed to make a decision.
I decided on a Sunday that I’d give Gilenya a try. I would call my doctor the next day so she could get the ball rolling. Later that afternoon, as I was doing research for an article, something popped onto my screen: Gilenya has an immunosuppressive effect and can increase the risk of skin cancers and lymphoma and serious opportunistic infections.
Lymphoma. The word rang loudly in my head. Lymphoma. That was what my father had and was the one thing he couldn't conquer. Tears welled up in my eyes as I read the word. I knew Gilenya would not be the drug for me.
Back to square one
So now I’m back to square one, trying to figure out which medication to take. My head is spinning faster and faster and once again I am driving myself crazy.
I wish I didn’t need to make so many decisions. I wish I didn’t have to worry so much. After 31 years of living with MS, I’ve grown tired of the journey and have to rely on the inner strength that’s always saved me. This too shall pass, Dad always said. Only not this time, Dad. I have to make a choice.
I’ll keep you posted. If you have any thoughts you want to share I’d love to hear from you.
NOTE: Since no two cases of MS are exactly alike, and no two people respond to medications the same way, be advised that this post is my personal story and is what works for me. I am not a medical person, and what I say should not be used as medical advice, nor should it influence anyone regarding what medicine is right for them. What does or doesn’t work for me doesn’t mean it will or will not work for you!
How many specialists did you see before finding "The One"?