Modinifinil (Provigil)

Greetings to All! I'm wondering how many of us diagnosed with MS were put on the above medication. If you are on it or have been on it, what is your opinion of it's effects?

[Kenu]

It has been several years ago but I did try Provigil for about 6-8 months. I was not noticing any improvement so I decided to quit. Probably been 15 years ago, maybe there has been an improvement since then? So anyway NO improvement. 👍🙏 Ken 🐾🐾

[hairbrain4 in reply to Kenu]

If you need energy it worked for me. I quit taking it when I started on Ocrevus. I no longer have fatigue anymore as the Ocrevus takes it away.

[Bwine]

I tried it years ago and from what I can remember it helped. But it was expensive and insurance didn’t want to cover it. Now I take Adderall.

[erash in reply to Bwine]

How has the adderall been for you?

[Bwine in reply to erash]

I love it! While I don’t have any major benefits to note (as in extra energy, etc.) I can say that when I ran out once while waiting to get a new prescription I couldn’t get enough sleep. I will add that I DO NOT want to ever run out again without a new prescription on hand. Fatigue is my most notable symptom with MS. Adderall has been a game changer!

[2littletime]

I have been on Provigil for probably 10-12 years. It does seem to help with fatigue. My insurance does cover it but I realize it is a little pricey. Insurance requires a prior approval every year & as long as it's covered I will continue to take it.

[Hidden in reply to 2littletime]

Hi! I have been on it 3 years. The one thing I have found while taking it is my thoughts tend to be of the "dark side". It does help with MS and all that entails but I'm thinking of stopping, at least for a while.

[Elle61 in reply to Hidden]

I tried it , didn't like it so I stopped it. FYI I knew somebody who took it and there thoughts were definitely on the "Dark Side". I wouldn't be surprised if they were in a nut house by now . elle

[Hidden in reply to Elle61]

Thank you for telling me this. I truly do think it leads to dark thinking, we can all do without that!

[HensTooth in reply to Hidden]

Hmm, I was taking it for about 6 months. I did have thoughts that were on the Dark Side. That is a really good way to describe it. Just like, mild suspicion, fear, negativity, hyper-vigilance. But, that said, it did keep me from falling into spontaneous naps!!

[Hidden in reply to HensTooth]

Wow...you nailed it! "Hyper Vigilante " exactly

[erash]

I’m on nuvigil. It helps. I do notice if I do not take it. I take half a pill each day.

[Sunshine400]

I tried it for the first time a few weeks ago during an episode of extreme fatigue. I actually asked for it. My doctor never mentioned it. I couldn't tell that it helped any. Then my husband read a study about it where they compared a group on it and one on placebo and there was no difference. So, I quit. No need to take something that isn't helping. I'm sure it may help others, but I tend to be science oriented and appreciate the studies.

[Pink-1]

I think I’m getting some benefit , been on it for about 6 months and no side effects. I’m considering increasing the dosage.

[CheryllG]

I was on this for about 10 years. Just stopped earlier this year due to much improvement with Ocrevus. It did exactly what it was supposed to do for me. Actually in a Class Action Lawsuit due the high co payment cost.

[kdali in reply to CheryllG]

Whoooo, what a testament to Ocrevus 🙌 Also, I hope you get some money back! The copay was absurd.

[kdali]

I’ve tried it for what was thought to be “swing shift syndrome” but I think I was only able to stay awake at night because it made my head hurt so bad...didn’t matter the dosage. Keto and caffeine was my cocktail that worked well up until I had another relapse.

[nes78]

didn't help me at all.

[Tulip77]

I’ve been on it for about 3 months. If it’s helping, it is minimal.

[kandykone1]

I did a clinical trial for 3 months. It was fine gave me more energy in the daytime. No side effects. Got off cause I just didn’t want to take meds if I didn’t “have” to.

[DogMamma]

My husband is the one with MS, he is prescribed for Provigil by his then neuro and has taken off and on for up to 10 years or so. Started with Provigil then after a couple yrs insurance said they wouldn't pay for it. Neuro left and Primary Doctor RX's Adderall and this stopped working. Took that for a few years. Now back on Provigil for about the last year. Seems like sometimes it helps and sometimes it doesn't.

[JTZES]

Provigil is an industry standard for fatigue and is somewhat difficult to get a script for. I tried it for 2 months it was replacing ritalin. After two months I switched back to the ritalin. Not very beneficial.

[CLEFan]

I used to take it about 5 years ago. I really did not notice any good response from it, and more importantly, have not noticed any decline since I stopped.

[Midgey_Midge06]

Provigil did nothing for me. Nuvigil is a lifesaver for me. Plus i do once a week b12 shots that help big time. The b12 and nuvigil are not covered with my insurance so i go to local pharmacy, tell them not to bother with insurance and i used good rx which helps a lot. Still expensive cuz i take 2 a day - usually before i get out of bed - but good rx is awesome

[memphee]

I have been using provigil for MS fatigue and for myself it is wonderful. Today, I find out my insurance will no longer approve this for MS fatigue, because it is labeled for narcolepsy,shift work disorder and sleep apena.

[Hidden in reply to memphee]

I'm so sorry! I think it's quite expensive

[Hidden in reply to Hidden]

Maybe a generic? I don't know if "progivil" is generic for Modanfinil

[memphee]

Thank you. Modanfinil is the generic for Provigil. I was fortunate my neurologist, who I think is awesome,suggested to try good RX and sent me coupons. I was able to get it filled at Costco using good RX, I highly recommend it.

[Hidden in reply to memphee]

Good for you!

[TonyiaR7]

I have tried Provigil. At first it didn’t help. Then another physician prescribed the dosage differently. Sometimes it gives me a little too much energy. And I get hyper and can not sleep. Coming off it , I first had insomnia and then I slept for days to feel normal. I only take if I need to be more alert or when the fatigue gets bad and/or I feel like I have narcolepsy.

[Hidden in reply to TonyiaR7]

I never thought of taking it as needed. You make a good point. Thank you

[Allmodafinil]

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