Modafinil or Amantadine: Who Decides?

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.

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!

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

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.

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?

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.

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.

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

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.

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

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.

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.

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.

been on amantadine for 15 years with no side effects. I like the fact that it seems to protect from flu

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.

I have been an MS patients for over ten years now. When serious issues with fatigue resulted in excessive weight gain and almost cost me my career, I turned to Provigil. At the time it was rumored to benefit MS fatigue but not allowed to be prescribed for it. It was wonderful for 2 years! I was able to be active again and lose that excess weight. I could keep up with the employees half my age, enjoy active time with my grand daughter, and for the first time in a long time didn't feel like MS was stealing my life. Unfortunately Provigil became the designer drug of choice for Silicon Valley workaholics, and the drug became more restrictive in insurance approvals. When I was finally able to get prescription for it after fight the insurance company, a 30 day supply went from $30 to $1300 after co pay. I simply could not afford that. After several years of trying to manage without any thing for fatigue, I again got so inactive my weight gain was out of control, I experienced regular chest pains, and I had no energy to even get out of bed for work most days. Now that Provigil's patent has expired, I am finally able to get the generic Modafinil at an affordable price. I am looking forward to having my life back !!

Hello,
I have Narcolepsy and I am currently taking 200mg twice daily and it barely works. My doctor added Ritalin 20mg twice daily and I have been on Ritalin for previous years until I moved to TX. In 2013, I was prescribed Vyvanse 70mg I believe. It didn't work better than the Ritalin or Adderall I tried while in TX. My doctor then prescribed Xyrem. Needless to say, none of these drugs have provided adequate relief from daytime sleepiness. I started Provigil in January 2016 and there's no change. I took Provigil about 10 years ago and the same results. I need serious help because I barely function.

I Live In Finland and find that over the world the policies are similar. However, there is one med not mentioned at all. Voxra, zyban, wellbutrin(trade names) . Some are getting great results with this, despite this being for a depression treatment (without being depressed) . It has effect on fatigue also, not for everyone - but still worth trying.

I live in Australia. I have been diagnosed with ppm since 2016, since then I have lost my job, my walking ability. I have tried many different medications none of them have been any benefit matter of fact quite the opposite. Amantadine being the last. My fatigue gets worse by the day. We are fortunate in this country in that we have the ndis that helps ms people with providers and equipment. The latest being an in house hoist just looking at the thing sent me into depression for two days. There just doesn't seem to be a way to slow this thing down. I have enjoyed reading the comments.

multiple sclerosis is something I dont take lightly, I cant imagine the pain that those who suffer from this. Ill be sharing this website if mine is allowed. Thank you

I also have CVS Caremark as my prescription provider. I was just prescribed Provigil by my neuro, but they insisted I try Amantadine first. Day 1- I felt like my pain was amplified, and slept literally all day. Day 2- my pain was still amplified but I figured if I made myself get up and go out into the world it would be better. Big mistake! I was more irritable than I have ever been in my life! I would go from anger to crying in the blink of an eye. Not only was I emotional, I could only feel negative emotion. My body is screaming in pain, much worse than I’m used to, which says something because I have both MS and fibromyalgia.

I have stopped taking the Amantadine and asked my doctor for the provigil. I’m hoping that CVS will approve it in all their wisdom. Otherwise, I’m just stuck.

I’ve had a question ever since CVS took over my prescription coverage... how is this even legal? Doesn’t it show a huge conflict of interest when the giant chain pharmacy controls what prescription your doctor can give you? I’m sure I’m not the only one who has a problem with this.

I've had MS for 46 years. Thank God, in all that time my only big problem was the fatigue which was really bad. I was prescribed Provigil and I call it my miracle drug. I'm 72 years old now and my balance has become a big problem now also. I had Gateway Medicare Health Assured for insurance which covered all my mrdications without a problem. However, their hospital coverage didn't start covering you until you were in your fifth day. For that reason I changed to UPMC. Oh whoa, coverage on my medicine co-pay was wonderful. Most of my meds had no co=pat at all. I started the plan in December; It is now March. My doctor had to submit a new pre-authorization for my Provigil.I found out why most of the drugs I take don't have co-pays. They denied his request and informed him I had to use Amantadine for two full months because IT WAS SAID Amantadine showed it treated the fatigue for fatigue also. So without my say they sent my pharmacy the script Amantadine instead of Provigil. I'm not stupid, the first thing I thought of was it must be cheaper. I told my doctor I refused to take it because I'm a firm believer in if it's not broke, why fix it. Why should I take a drug THAT'S SAID TO HELP, when I know a drug that DEFINITY HELPS. I called UPMC Member Services and told them just that. They told me to have my doctor send another pre-aothorization request explaining I refuse to take the drug and why and to back up my refusal. My big question is, (I haven't thought about it until just now is) if I take something used for a different disease and it doesn't work for my fatigue will I then be granted my Provigil. The other thing that's frightening me is when I went to my doctor my balance is so bad and deteriorated so quickly, my docoter ordered me to have an MRI of my brain and spinal column to see if my MS has progressed more. I live alone and I can't even amagine walking around like a sleep deprived drunk. I don't know what to do!

I have been using modafinil for a few years now and it makes me focused on my work and studies.

Supposibly synergistic supplements and amino acids include acetyl l-carnitine, choline, inositol, l-tyrosine, alpha lipoic acid and 5-htp. I tried these out for about a month with DMAE and noticed a surge in productivity, less “brain fog,” a decrease in the urge to procrastinate and concentration. But provigil (Modafinil) definitely works much better for me. Very glad ? I googled ‘Uniso2slp’ and got it. At work, I was able to focus on tasks amazingly well…the day flew by and I was able to multi-task and get a lot done, more than I would have, and it wasn’t as emotionally draining. I didn’t have to motivate myself to do the work.

However you should notice Modafinil enhancing your awareness for almost a full day, allowing you to focus and think more indepthly. Modafinil keeps me awake and alert all day. It makes it easier to multitask. For me, the effect is very noticeable that I've taken something. Modafinil has been more beneficial to me personally. I absolutely loved it. It gave me a clean, sharp focus. Coming down was light and barely noticeable.

I was on Amantadine for a couple of years, it helped with my mobility but the "Brain Fog" was getting worse so my neurologist changed me to Modafinil.
After a week of coming off the Amantadine and starting the Modafinil I was unable to walk more than 10mt, but I could think.
It took some robust negotiating with my neurologist, but I am now taking Modafinil AND Amantadine without any obvious side effects. I only need to take one Modafinil tablet in the morning usually, if I know I'm going to have a long or busy day I might take a second one at midday. My ability to walk improved within days of restarting the Amantadine.
It seems the Amantadine helps with mobility and the Modafinil helps with cognition.
Although both drugs are used individually off-label for MS fatigue the combination was not offered to me, I was given an either/or option between the two drugs, so either be a walking zombie, or immobile but able to think, neither of which would allow me to continue working.
The combination may not work for everyone but it certainly makes a big difference to me, I'm able to keep working.

This may hurt but in India you don't need even a prescription for it and it's about $20 for 100 tablets.
I take ARMODAFINIL 250mg and ARMODAFINIL is the sister of modafinil and the only real difference is how long they work for. ARMODAFINIL works for about 10-12 hours. I really love it. My insurance is medicaid and cash price is between $400-$500.
Try it out my friend