I did not meet diagnostic criteria for an MS diagnosis, but I had optic neuritis, brain lesions, and Oligoclonal bands in my spinal fluid, all of which are consistent with MS. And, everything else had been ruled out. For women my age with optic neuritis and brain lesions, there is a 72% chance of developing MS. So, although I was not diagnosed with MS, I had the option to start treatment with a disease modifying therapy (DMT)
There is no cure for MS. There are no medications that stop MS or reverse damage caused by MS. The damage to my optic nerve is permanent. Instead, disease modifying therapies (DMTs) are used to try to prevent relapses and slow the progression of MS. Based on my tests and symptoms, my neurologist thought it was likely that my MS would be mild. So, the treatments she wanted me to consider were the safest options, the ones with a long track record and the less serious side effects. There were three DMTs she wanted me to consider, two injections and one pill.
From the beginning, I wanted a diagnosis and to start fighting. If it was MS, I wanted to know as soon as possible so I could start treatment as soon as possible. But, what now? With COVID, the costs, and side effects of treatment, should I start now? Or wait?
My primary concern was whether starting a DMT would put me at higher risk for COVID. When I had steroid infusions after the optic neuritis my neurologist told me that the steroid infusions put me at higher risk to get COVID, and higher risk of having serious complications if I got COVID. Therefore, she recommended that I work from home for four to six weeks after I finished the steroids. I knew that some MS treatments impacted your immune system. If starting a DMT would put me at higher risk for COVID, I would wait to start treatment. I asked the MS specialist and the MS pharmacist about COVID and both said there was no evidence that any of the DMTs they were recommending would increase my risk of COVID or COVID complications. I also did my own research, and found that the two injections had no risks and the one oral option had no known risks for COVID.
Originally, I was hoping for a pill. I can do pills. But, a daily injection? That sounded terrifying. I didn’t think I could do it. From the very first neurologist appointment where he said the first, and safest treatments for MS were daily injection, I had worried about having to poke myself. I’d never given myself an injection, and while I didn’t have a needle phobia, I always turned away when I got a shot, blood draw, or IV. The MS specialist had given an oral option, but the side effects and risks were more serious than the injections. The oral option could cause upset stomach and flu-like symptoms, and required monitoring and blood tests because it could cause liver damage. So, while a pill seemed easier, I wasn’t comfortable with the risks. Turned out, my insurance wouldn’t cover it anyway, unless I tried and “failed” one of the injectables.
DMTs are very expensive. On average, MS medications cost $70,000 per year. This can make treatment impossible for some people. There are manufacturer assistance programs and other sources of aid that you can apply for. At first, I was told my out of pocket expense would be $1,000 a month, but in a later appointment I learned that my insurance covered all but $20 per month for either of the injectables. I am lucky that cost was not a factor I had to consider. But, I can’t imagine all the people suffering from MS who cannot afford treatment, or for whom the cost of treatment requires great sacrifice.
That left two injectable options. I watched videos of self injections and convinced myself I could do it. I also researched DMTs and starting a DMT early was one of the biggest factors in reducing the progression of MS. Given the likelihood of MS, and the difference starting a DMT now could make over the course of my life, I decided I had to do it. The two injections were similar. Both daily injections. Both subcutaneous (under the skin, rather than into the muscle). One had to be stored in the fridge, which was inconvenient, but came in prefilled syringes. The other came in a powder that had to be mixed with water and drawn into the syringe. That seemed way too complicated. The powder one also had potential flu-like symptoms and required monitoring, while the most common side effect for the one that came in prefilled syringes was injection site pain, and it did not require monitoring.
I spent weeks talking to the neurologist, pharmacist, and doing my own research. I asked a lot of questions, I read a lot of research and literature, and also accounts of people with MS. I talked to friends and family. I went back and forth right up until the moment I told the neurologist that I wanted to start Glatopa, the injection that came in pre-filled syringes. Even with all the research I did, I had no idea what I was in for.
While I was waiting to start treatment, I decided to start this blog.
2 thoughts on “Should I Start Treatment?”
I feel like I’m getting information from you that my husband’s neurologist hasn’t shared. We’re still in the early stages of his diagnosis so this is all so confusing. Thank you for sharing what you’ve learned. I know as bloggers that it’s sometimes hard to know if we’re reaching anyone but I want you to know that you are.
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Thank you for this breakdown! I’m still in the testing phase but Copaxone, rebiff and Aubagio have all been mentioned. Copaxone is where I’m leaning as well as soon as I get back more test results. The waiting is so hard. Thank you for sharing your story!
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