Fatigue. That No. 1 symptom that a large majority of people with multiple sclerosis are affected by.
MS fatigue. It can be crushing, numbing, and stop the hardiest person in their tracks. I know MS fatigue all too well because it affects me all the time.
Combating MS fatigue
What causes MS fatigue isn’t exactly known, but there are lots of educated guesses. It might be because it is a challenge to do anything physical and remain upright, thanks to balance problems. Or with MS, it is just exhausting to move because it takes extra effort for our central nervous system to get the right message. It could be a side effect of the medicines we take for other symptoms. It very well could be tied to depression, another common problem for people with MS. The list of possible causes of MS fatigue is lengthy.
Whatever the cause, we’re fortunate if we find something that helps us with fatigue. That help can come in the form of pharmaceuticals, although no FDA-approved therapy for MS fatigue exists. Everything we take for MS fatigue is done off-label, meaning it hasn’t been thoroughly studied for use in rigorous scientific trials.
I’ve been fortunate to have been prescribed modafinil (also known by the brand name Provigil) for over four years. While it isn’t perfect, it does keep me going through the day and it is obvious when I skip a dose. My energy reserve is depleted within a few hours of getting out of bed if I don’t take this medication. Modafinil is not an amphetamine, but it is a therapy approved for people who do shift-work through the night and need help with sleep disorders. It doesn’t work for everyone, but it does work for me.
I’ve also been fortunate to have this therapy available because people are often refused access as it isn’t an official multiple sclerosis medication.
You can imagine my surprise and dismay when I received a call from my neurologist’s nurse today to let me know that my prescription refill for modafinil had been denied. I have a new pharmaceutical provider and am no longer in the Express Scripts system. Instead, I have Caremark, a division of CVS drugs. The CVS Caremark folks, whoever it is that makes the decisions, want me to try amantadine in place of modafinil. I wasn’t even familiar with this medication and am surprised to see it is an antiviral medicine used to treat influenza A symptoms and off-label for Parkinson’s disease and movement disorders.
Of course, this has me confused — I don’t see the connection with this recommended treatment and my MS fatigue. I find online notes that it is used off-label, but it has a low efficacy rate in helping with MS fatigue.
I was so caught off-guard by the phone call from the MS nurse, that I told her no, I don’t want to make the change and that she should appeal the insurance decision. I have success with modafinil and it makes no sense that I should change up therapies. As we have all been told over and over, if it ain’t broke, don’t fix it. Modafinil works for me, so why would I change?
I can only hypothesize that the bottom line for their decision is money. A three-month supply of modafinil had been billed to my previous drug provider at about $4,500 (I take two a day over 90 days, or 180 tablets). Of course, the insurance company doesn’t pay this much, but this is the list price for a generic drug.
According to GoodRx, a website that specializes in helping people find the best pricing on prescriptions, the average cost of amantadine at the time of this writing is $120 for 180 capsules at Costco, a warehouse shopping club. The average price at Costco for 180 modafinil tablets is $175.
I have no idea why modafinil costs more, but should that be the factor that determines denial of a therapy that works? If Costco can sell me my 90-day prescription directly for $175, why did Express Scripts show that same cost at $4,500? It’s an easy leap to guess my new pharmacy insurance wants me to change treatments to save them money, even though it’s a therapy that works for me.
It’s broke — fix it
The prices shouldn’t be this far-ranging. Instead of the insurance provider, my doctor and I should decide what treatments I take. I’m now forced to wait and see the results of engaging Caremark in this appeal and hope I am not forced to stop taking this drug that makes a huge difference for my fatigue. Our system for prescription drugs, the ease of access to them, and who decides which ones we are allowed to take is broken. Isn’t it time for it to be fixed?
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.