Modafinil or Amantadine: Who Decides?

Modafinil or Amantadine: Who Decides?


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.

Prescription changes

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?

Comparing costs

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?

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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.

16 comments

  1. Jo Jo says:

    You are correct, it is very hard to get a drug that is not FDA-approved for MS. Modafinil didn’t work for me. You should talk to your doctor about Naltrexone. I have been on this drug for approximately 5 weeks. After a week and a half I noticed Improvement in my fatigue, although it only lasts for a little better than a half a day but that half a day is better than nothing at all.
    I am still waiting to see if my insurance company will cover it but the drug only cost me $47.00 for 30 pills. I have SPMS and this is the first drug that is help me with fatigue. I realized that all drugs affect everybody differently. But you should ask your doctor what he thinks about this drug.

  2. Richard T Forsley says:

    Having grown up with my mother having MS raised five children while caring for 32 mentally disturbed veterans who was always happy and walked with a cane until the age of 84 never taking any drugs but was powered by iced dark coffee I’ve done the same going on 33 years with MS! Also a cold shower reduces inflammation and will make you feel like a new person!

  3. Sarah says:

    Hi Laura,
    I’m in the UK, I had to fight for months to be prescribed Amandatine, which is the only drug that can be prescribed for MS fatigue! I finally got it and the first 3 days my head was a mess, I couldn’t focus on just one thing at a time but I stuck with it. Then I had the best week I’d had in years! Cognition was better and I got things done that I wanted to do. 11 days in I had a heavy head, what felt like pressure and got a painless migraine with aura, the day after I had 2 in one day and I knew it was the amandatine, I was gutted! I had to stop taking it and the migraines stopped but the fatigue came back with a vengeance. So that’s it, Iv just got to live with the fatigue, I hope you get to continue on the drug that suits you.
    Sarah
    Nottingham

    • Elise says:

      There are other drugs that help fatigue. If your MS specialist doesn’t know then visit a sleep doctor with experience with MS patients. That’s how I found help.

      I’ve also found even more help with fatigue using the Wahls Protocol diet (massively increasing the good fats in my diet, eating nutrient-dense foods and eliminating grains-sugar-dairy).

      Best to you.

  4. John Connor says:

    It turns out Amantadine is good for walking. However when I came off Gilenya it gave me the side effect of severe diarrhea!!! Went onto Modafinil which gave me no side effects & I found was a better drug for clarity. Never found either good for dealing with fatigue but both combatted fuzziness or ‘brain fog’. In the UK am covered by the NHS & ultimately NICE who decide on drug coverage.

  5. Mark says:

    After many years of many scripts for MS, and fortunate enough to pick my insurance plan from an insurance broker’s very large list of available policies, no cost to me because that was a company fully paid for benefit, and since I was the one choosing for everyone in the company which plan we all had, the Co-Pays for the ABC &Rebif drugs were $25! But those days are gone, and I watched medical insurance costs skyrocketing since I “retired” getting closer to a decade now. If one such as I did years ago, pick a plan not held back by cost, could one still get such a plan? And, what do our elected officials get?
    SO HOW DO WE MOVE FORWARD ON CHANGES?

  6. Catherine says:

    Great the way some pharmaceutical company and your insurance can just decide to put you on a drug you have never taken before without even seeing you!!
    I’m lucky in Ireland that I get Provigil every month on my prescription.

  7. Debbie says:

    The same thing has happened to me. I had to request that the benefits administrator at work see what they could do and they agreed to authorize it indefinitely.

  8. Margo Casey says:

    Amadadine is not as effective with fatigue- in my case I had to try it first before I got approved for provigil. Stay with your appeal!

    Margo

  9. Eli says:

    17 years ago I was prescribed Amantadine for fatigue. It had no beneficial effect. Then I was switched to Provigil which had a dramatic dramatic beneficial effect. I have been on it, or modafinil, ever since. The choice should be up to us and our doctors.

  10. Jacklynn says:

    I’ve been on Amantadine for 4 years. It has helped with fatigue. Had to adjust the dosage but doing ok. I have PPMS. Still working and walking ok. Try it. Don’t give in or give up

  11. Gena R. Wright says:

    I know how you feel. I’m on Gilenya. I was diagnosed with MS in December of 2017. My insurance wants me to try out the other injection medicines before I go further with the pill Gilenya. It’s been working fine for me these past 2 months. I’ve been learning a lot about insurance companies and I see they like you to take stuff that is on their tier list of medicines first. I’m floored how a insurance company can dictate on what medicine you should take because of the deal they got with the pharmaceutical company.

  12. Peter says:

    I’ve been on Amantadine for about 16 years, I take 100 mg twice a day – one pill in the morning and the second one 6 hours later.
    It helps me a lot, giving me extra energy and stamina during the day. Amantadine worked for me when I was RRMS patient, and also now at SPMS.

  13. Beth says:

    I had the same issue when my prescription coverage was switched to CVS/Caremark. They are truly the worst. They are intrusive and overly heavy handed. I have to fight with them constantly. I started getting Modafinil for $35 for 30 days at Costco just paying cash out of pocket. Then I learned that the pills from that manufacturer didn’t actually work the same as my original script that I used to get from my local pharmacy. CVS/Caremark also forced me to mail order for my drugs when I was really happy with my local mom & pop drug store. I went back to them to talk about the difference between their pills and the Costco pills and they were indeed a different manufacturer. The Costco pills were from a manufacturer in India – nothing wrong with that but they didn’t work for me at all. Like taking candy pills. I was able to negotiate the price for the original pills with my local pharmacy so I now pay $104/30 pills. I try not to take them every day because too many days in a row can mess me up (I get paranoid and oddly easily irritable). I hope you and your doctor are successful with your appeal. That company truly is the worst.

  14. Stefanie says:

    I feel your frustration! After having to go through the whole prior authorization run around with insurance I was finally able to get on Provigil/Modafinil. It helped and I refilled my Rx…unfortunately after a while I put two and two together and realized that the increase in headaches and upset stomach I was experiencing were related (I thought another Rx I had started on was the cause). Also unfortunate was that I had already refilled the Rx a third time before figuring out I couldn’t take it anymore and the price had gone up for me too! I have a full, unopened bottle I would offer you in a heartbeat if I could! Now trying to get my doctor to prescribe Amantadine to try it out, he said it’s unlikely to cause the same side effects, but still a bit nervous to try. Some days are ok, some I’m beyond exhausted, not sure what to do.

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