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Julie  Stachowiak, Ph.D.

Heard of Nuvigil for Multiple Sclerosis Fatigue?

By January 19, 2010

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Neither had I until a friend with multiple sclerosis (who sees the same neurologist that I do) called me to tell me that it had "changed her life." Nuvigil (armodafinil) is a derivative of Provigil (modafinil), which many people with MS take to combat MS-related fatigue.

My ears perked up at the excitement in my friend's voice. She went on to tell me that she couldn't tolerate Provigil, as it left her too wakeful to sleep at night. That Provigil-induced insomnia led to her getting not enough sleep to feel rested, so that she was even more tired the next day. Now she has big plans to do things that she was afraid to even consider before.

Provigil wasn't my friend, either. It completely eliminated my appetite in a kind of scary way, in that I was almost disgusted by food. That would lead to weird blood sugar fluctuations as I would finally force myself to eat something, but not enough or the wrong thing. Plus, I felt "off" the whole time I was taking it, in a kind of headachy, nauseated kind of way. I can't even really say it greatly improved my fatigue.

I set out to find out more info about Nuvigil for MS fatigue. Digging around, I found a couple of blogs where MSers had said the same thing as my friend - great drug, more effective and with fewer side effects than Provigil. However, I also found an equal number that could not tolerate Nuvigil.

Here is some very basic Provigil vs. Nuvigil scoop:

Nuvigil is NOT (as is rumored) a generic version of Provigil, but is a derivative of Provigil (the right-handed isomer, to be exact). Using just part of the molecule that makes up Provigil is thought to be a way to get more benefits with fewer side effects, which seem to correspond to the left-handed isomer.

Nuvigil may also cause the same sorts of side effects as Provigil, the most serious being a life-threatening rash. Also, Nuvigil may lower the effectiveness of hormonal birth control methods (pills, patches, rings and IUDs). Use a second (or different) method of birth control.

A couple of other points bear mentioning. Your Nuvigil dosage will be different than your Provigil dosage, so be careful here. Also, your insurance may not cover Nuvigil at the same level as it covered Provigil.

One place I like to look for patient reports is the Askapatient database. Check out what people have to say in Nuvigil patient ratings (although keep in mind that most of these people are not using it for MS-related fatigue).

What about you? Have you tried Nuvigil for your MS-related fatigue? Please, tell us what happened in the comment section - there are many of us who would love to hear what you have to say.

Read more:

Comments
January 19, 2010 at 4:29 pm
(1) RK says:

Interesting.

Provigil does help my fatigue, but the appetite suppression made me drop too much weight (already thin) so my doc only wants me to take it occasionally.

January 19, 2010 at 7:30 pm
(2) Joan says:

Interesting. My husband still fell asleep during the day on provigil. MS fatigue and cognitive disfunction are linked to slowed cerebral perfusion and abnormal cerebral blood flow-
http://cat.inist.fr/?aModele=afficheN&cpsidt=20062093
The only thing that relieved my husband’s fatigue and cog fog was having his occluded jugular veins opened. Now he is alert and his brain is oxygenated. He is back to working full time. He also hasn’t had a relapse or any MS progression since his procedure last May. But this new medication may work for some folks.

January 20, 2010 at 1:06 pm
(3) twopack says:

My neuro gave me a manufacturer coupon and script for a 30 day supply of Nuvigil. The first one I took I felt very jumpy. I skipped a few days and then took only half a tablet at a time. It does help my MS related fatigue.

I usually take Provigil daily. I began taking it only on work days but then decided I deserved to be awake on my days off too. With it I am able to get through a day without wanting or needing to nap and I’m still tired enough at sleep at night. It works for me and it’s great.

Provigil is the drug that will be available as a generic next year. I look forward to it being more affordable. I suspect it’s expiring patent is the base reason for the relaese of Nuvigil.

January 20, 2010 at 9:21 pm
(4) isis says:

Provigil works beautifully for me. Provigil doesn’t affect my appetite, make me jumpy or anything else; I am just not fatigued, or sleepy. Smooooth drug. Only one thing wrong — it costs too much.

January 21, 2010 at 10:57 am
(5) Jesse says:

I found that if I took half the amount of Provigill that was perscribed halfway through my day it was much more effective and didn’t make me feel high the way a full dose did. 100mg(half a pill) around noon right after lunch seems way less disruptive and really did make me able to function through the rest of my day.

January 21, 2010 at 3:31 pm
(6) Ed says:

My wife took Nuvigil for her MS fatigue for about a week. She stopped taking it after we noticed she was crying rather frequently, for no apparent reason. The crying stopped after the Nuvigil was stopped. She didn’t experience any less fatigue while taking it, either.

January 22, 2010 at 7:40 am
(7) Mart says:

Well, here I am, 5.30 am and still unable to sleep. I saw my neurologist this morning as I was on my third day of feeling totally trashed, having run out of Nuvigil samples a while ago. While I had a supply previously, I would take half a tablet most days, which worked well with no side affects but today, having felt so exhausted, when I got home at nearly midday I took a full tablet. A mistake it seems, I can only hope that I won’t fall asleep half way through the day ahead because there is no chance of it happening now.

February 1, 2010 at 2:59 am
(8) Dayna says:

I know that we all respond differently to every medication, but Nuvigil was horrible for me. I felt like I was on speed! I was jittery and jumpy, and I actually began to have panic attacks and severe anxiety after two days. It took me a few days to realize that it was the Nuvigil, and my neurologist even claimed that it was highly unlikely that the Nuvigil would make me feel that way. So I experimented…stopped and started it again after a few days with the same results. Never again!

March 5, 2010 at 3:16 pm
(9) peggy says:

Nuvigil greatly helped my fatigue and i was able to be more productive rather than sit on a heatin pad and become a couch potato. I really with they would also get it labeled for fibro as well cuz insurances won’t pre-authorize it and being unemployed i cannot afford the medicine. My doc gave me a voucher for a free 30-day supply just this month – guess what the dumb voucher is expired from december so i still am out and cannot get it.

May 5, 2010 at 7:34 pm
(10) allison says:

I have MS and usually have energy till about 1 everyday then i crash and am worthless. I started 50 mg Nuvigil and feel like I did ten years ago. I was able to do chores around the house all day. I did experience some dry mouth but worth the gain in energy. I love this drug. However, I am not crazy about all these ms drugs so I opt to take it a few days on and then give my body a break for a few days.

May 8, 2010 at 8:30 pm
(11) Sheila says:

I started taking Nuvigil a few days ago for MS related fatigue. I was diagnosed this past November. I was scheduled to student teach in the fall and I don’t think I will. Besides not wanting to lose my health ins. I know I can not tolerate the stress and energy needed to teach elementary schoolers.

My schedule has been crazy and I have lost about 5 pounds this week. I don’t know if it is the meds or busy schedule that is causing me not to eat. Anyone else experiencing rapid weight loss on Nuvigil?

May 13, 2010 at 11:36 pm
(12) Wiz says:

I was taking Nuvigil and it helped a lot. My new insurance won’t approve the RX so I have to take Provigil or pay for the Nuvigil myself.

May 26, 2010 at 12:37 pm
(13) Ed says:

Insurance company would not pay for Nuvigil. Substituted Amantadine. The little help I received from the Amantadine was not worth putting up with the constipation the Amantadine caused.

May 26, 2010 at 12:45 pm
(14) Lisa says:

I have used Provigil for quite a while. My insurance covered it until this year. I was taking 3-200mg caplets a day. .
Reason being Provigil was not approved specifically for MS fatigue. The 600 mgs were perfect; lessened my fatigue without keeping me up at night. It was a godsend. I tried Nuvigil for 30 days and it took the edge off the fatigue, although since lowering my Provigil doseage, I have horrible insomnia. I am still waiting for approval for the Nuvigil from my insurance company. I don’t know what will happen if I am unable to use this.

May 26, 2010 at 12:51 pm
(15) Terry says:

I have been using Nuvigil off and on for past 3 months and it works great. Fatigue is not a regular problem, it’s mostly related to how well I sleep. I was diagnosed with sleep apnea last October and started CPAP. Since then I have had fewer spells of fatigue and need less of the Nuvigil. I’m waiting to see how the summer goes though. Have not had any problems with side effects, the appetite suppressant works as I need to lose about 50 lbs! LOL

May 27, 2010 at 12:57 am
(16) ST says:

I was on Provigil for a few years without much problems. It “sped up” my digestive system if I took 2 (100s) a day for any length of time. One dr told me not to take it after 2 pm or I’d have trouble sleeping.
Nuvigil was a problem for me. More severe headaches, insomnia, and I had to take it VERY early in the morning or I wouldn’t sleep at all. Since Provigil doesn’t last as long it was easier to time it so I could sleep.
I’m back on Provigil and won’t use Nuvigil again.

June 3, 2010 at 10:18 am
(17) Lisa says:

I recently started taking Nuvigil. The first couple of days I was really jumpy and ‘wired’ but that has since subsided. Overall it does help with the fatigue, but I will caution that if you have any additional caffiene during the day (e.g. a soda or coffee) you will be running around like speed racer, or at least I was.

July 28, 2010 at 8:45 pm
(18) Joy says:

Just started this today and I was very pleased, although a little wired. I felt more alive than I have in a long while. Can’t remember the last time I felt wired, so I rather enjoyed it.

March 8, 2011 at 3:18 pm
(19) Cheri says:

I am just reading all these comments (just started Nuvigil today) and think I am feeling more alive too, just like you said in your comment! And, yes, a little wired! :) I guess it just makes me feel better to know I am not the only one with this horrible fatigue.

August 8, 2010 at 12:08 pm
(20) Lisa says:

Started taking Nuvigil over one week ago. Love that I now have the same energy I did before MS. Don’t love the constant low-grade nausea that I experience up until about 5pm. Does this pass in time? Would really like to hear more about other people’s experiences.

August 12, 2010 at 12:34 pm
(21) beerab says:

Hey just wanted to let anyone reading this know that a lot of people with MS suffer from low levels of vitamin D- have your doctor check your D and anything under 50 ng/ml is too low. In fact I read online about MS and vitamin D and you should be around 70ng/ml if you have MS. My husband has MS, was tested for D, and now takes 1000 mg of D a day (one multivitamin and one additional D+calcium supplement) and within three weeks his fatigue greatly decreased. I also tested (I do not have MS) and mine was lower than his. We both are on Nuvigil (I have sleep apnea) but I stopped taking mine three weeks after starting my D therapy and I’m happy to say I no longer need Nuvigil, my husband is still taking his but not daily anymore.

Vitamin D is ONLY found in few sources like Milk, salmon, cod liver oil, and a few other sources of seafood. Being out in the sun is NOT good enough for the amount of D you need- please look into it I promise you will notice a difference if you take it daily for one month! Our doctor said to get enough D you’d need to drink 8 glasses of milk a DAY or eat 7 oz of salmon a day! Who does that?

August 18, 2010 at 11:08 pm
(22) Rhonda says:

HI, last year in May of 2009, I was diagnosed with MS, although in 1998, the MRI showed that I had MS, but the neurologist said I did not. Well I did. Last year I started with the tingling in my index finger, that went up my hand, my arm, face, neck and back, about a month latter that was gone, I also have fatigue, that really bothers me, I work a full 8 hour days at a nursing home, although I can only work part time with my fatigue and weakness on my right side. My question is, I started taking nuvagil today, I am in my 50′s and today I worked circles around the younger employees. I also felt a little jittery. Does this get better or do i cut the dose in half, I am taking 150mg. I also take a blood pressure medicine and anti anxiety medicinel. Any advice would be greatly appreciated.

August 25, 2010 at 8:11 am
(23) AB says:

Nuvigill has been a blessing for me. I can function during the day and still sleep at night. When I miss a day, I realize exactly how much it really is working. Loss of appitite is no longer a side effect, unfortunantly! Dry mouth is a small price to pay to stay awake during the day. MS will not beat me!!!!!!!!!!!!

September 24, 2010 at 9:51 pm
(24) HOLLY says:

JULIE I HOPE YOUR FEELING BETTER WHEN TAKING THE NUVIGIL, I HAD THE SAME PROBLEM BUT IT DID NOT LAST LONG. I HAVE MS AND LUPUS AND A FULL TIME CARE GIVER FOR MY OLDER PARENTS. I AM NOT SURE WHAT I WOULD DO WITHOUT THIS DRUG! I JUST WISH IT DID NOT COST SO MUCH!

September 25, 2010 at 3:29 pm
(25) ireneg says:

I just started taking Nuvigil for the second time. I had a free 30 day triial and was excited by the results. The trial ended and my insurance refused to pay for the drug. I waited to see if other remedies might help–alpha lipoic acid, L-carnitine and ambetadine (sp?) I lost weight–yeah!–but I was still fatigued. I sucked it up and bought the drug myself for $345 for 30 pills. I am trying cutting them in half. I did not have the instant results I saw during my trial. However, I am having a sore muscle reaction to my flu shot. Does it sometimes take awhile for the drug to make a difference? I have little appetite. I am happy about that, but had trouble sleeping last night–not happy about that. I am 67 and was finally diagnosed with MS last summer. I think I may have primary progressive, maybe secondary progressive. Mobililty has decreased at a rapid rate in the past year. Is there anyone out there that has a similar profile that can give me some feedback on their experience with Nuvigil? My drug co-pays were about $400 a month before I started taking Nuvigil. I am not eligible for any help with paying for Nuvigil. I cannot use the $50 coupon because I have to pay directly for my Nuvigil. Go figure. I am frustrated. Comments will be appreciated.

October 1, 2010 at 2:44 pm
(26) Meka says:

Ireneg, try Target’s Pharmacy, if you have one in the area. My insurance refused to pay no more than $10. I went to Target and they had no issues using the $50 off coupon. Worth a try, right?

November 11, 2010 at 11:38 pm
(27) Carolyn says:

I had been taking Provigil for 4 years. Last year my doc asked me if I wanted to try a new drug that was supposed to last longer. I said “yes” because provigil lasted until about 4pm and then I became so fatigued I couldn’t prepare dinner. I love the Nuvigil. I have no trouble sleeping. The only problem is that Medicare will not pay for it because it is not FDA approved for MS. Does anyone have any idea how to go about getting FDA to approve this drug for MS? Without it, I spend most of the day on the couch, sleeping my life away!

November 30, 2010 at 1:09 pm
(28) Josh says:

My wife has MS and Nuvigil has changed her life! She is completely back to normal but insurance will not cover it because Nuvigil is not an “MS” drug. Hello? Nuvigil? There’s a multi-million dollar market out there! Get on it!

December 3, 2010 at 8:50 pm
(29) Jen says:

I have been suffering from MS related fatigue for over two years and began taking the drug days ago. I AM A DIFFERENT PERSON! Able to care for my children, function in the afternoons, not planning every move of the day in careful consideration of conserving energy… this is awesome. I have had a bit of a headache when I wake up in the morning, but other than that no side effects and no difficulty sleeping. I feel like I have my life back!!

December 23, 2010 at 11:55 am
(30) Maryellen says:

My Dr. had given me some samples of the Nuvigil & I found that it made it difficult to go to sleep at night.I was at a MS mtg & heard about the Provigil not lasting as long.I got a prescription for that & it works well for me.You’re to take twice a day but I only use it in the morning & I’m good.I’m afraid to to a second one cause I don’t want problems going to sleep.I have noticed a curbing of appetite but I consider that a bonus!

January 8, 2011 at 8:59 pm
(31) Leslie says:

I went to see my Neurologist on Wednesday and he gave me some samples if Nuvigil for my MS fatigue. I took it Wednesday,Thursday and Friday. Each day I felt worse. My head was hurting, I had no appetite and I started feeling like a relapse was coming on. My legs were bothering me and I started to feel problems walking. I stopped taking it and today (Saturday) has been a better day. Not sure what other alternatives there might be for my fatigue.

January 21, 2011 at 6:59 pm
(32) Jen says:

I started Nuvigil today. I can honestly say that I feel more clear headed than I have in a long time. I feel more alert, able to complete tasks. The only side effect so far is that it’s given me a slight headache and I feel a little speedy, but that’s gotten better as the day progressed. I am on 250 mg — the maximum dose. I am so grateful to my Dr. for listening to me when I said that Provigil and Amantadine did nothing for me, and for doing the extra work with insurance to get this drug covered.

February 3, 2011 at 2:56 pm
(33) kim says:

Provigil was a miracle drug for me in treating my MS related fatigue. Now my insurance company will only cover Nuvigil, which I can not tolerate. They tell me that because Nuvigil has the same active ingredient, they will not cover Provigil. It is sickening to know that there is a drug that can help me and I am effectively being denied access to it. The drug manufacturer is aggressively promoting Nuvigil as a replacement for Provigil since they will lose profits when Provigil goes generic in 2012. So, it comes down to the profits of drug and insurance companies over patient care once again. So sad.

February 5, 2011 at 10:04 pm
(34) Beth says:

I was switched from Provigil to Nuvigil and it was very scary. I went into depression. I was unable to really sleep, but also unable to stay awake – I was a complete zombie. Once I almost fell asleep driving. I’m also on Ampyra which has been awesome for walking, but that also started to slip. I finally got switched back and am better now. The worst part was I felt no one believed me. So I think the word needs to get out that meds are so different for everyone. There was a small (70 people) trial for Provigil and MS which showed it worked, but nothing yet for Nuvigil. The whole thing is sad. Get the word out – works for some, not for others!

March 5, 2011 at 9:40 pm
(35) Marion says:

I tried Provigil a few years ago. It did nothing for my MS fatigue – in fact, I accidentally took it one night & was afraid it would keep me up all night, but I slept like a log! On the other hand, it did weird things to my mood, and it caused unbearable oral/nasal dryness. I’m not in a big hurry to try another drug… and yet, my fatigue is bad… maybe it’s time to ask my neuro about this version.

March 28, 2011 at 7:44 pm
(36) Jenna says:

I am very happy w/ the Nuvigil. I call it my energy medicine! As much as I like it, my family feels a tiny bit different. It makes me talk NON-STOP! Sometimes I feel like my mouth can’t get the words out fast enough for my brain. I started w/ the 250mg. Then because of this, tried the 150mg. The talking was less w/ the lower dose, but so was the energy. In fact, It was quite a bit less. Now I switch between the 2 mg.’s. I thought 225mg.s would be perfect but my doc. said they don’t come in 25mg/50mg.?? I was told by my Neoro to absolutely NOT CUT the pills, that this was dangerous??? As I’ve been reading, people are cutting them???

April 6, 2011 at 1:49 pm
(37) Lynn says:

My Dr prescribed Nuvigil for my MS fatigue. She wrote the Rx for 250 mg, but told me only to take 1/2 of the pill for the first few days and then I could go up to the whole tablet. I was given a nuvigil card for a discount on the co-pay. I did not have any problems with the insurance covering it. (I may when I refill)
I took the first dose yesterday at 9:00 am. I love it. I feel great. I did not feel the fatigue until evening. I think I will not go to the full tablet just yet.

October 7, 2011 at 7:12 pm
(38) Suzanne Ranesbottom says:

I recently started taking Nuvigil. It is an incredible medication! I wasn’t thinking of taking anything for my MS related fatigue but the day my doctor prescribed Nuvigil, I was telling him how disconnected from the world I felt. I felt like I wasn’t really present. I didn’t know how to explain it. When I started taking Nuvigil I was surprised by how normal I feel. I didn’t realize that feeling of disconnectedness was fatigue. I now read that it may help with my cognitive issues and I did notice that it is helping with that too. This medication has given me a sense of normalcy back. I am so thankful my doctor prescribed it!

November 10, 2011 at 12:34 am
(39) kim says:

I have had MS dxed for 33yrs now and my doctor of 33yrs retired. I have been feeling like my right arm has been cut off with him retiring. He is who dxed me and was the head of John Hopkins Neruo. SO today I was a new Neruo for the first time. Different, he was nice and percribed the Nuvigil 150 mg take it Mon, Wed, Fri. I got samples and the discount card all the goodies. After I read the side effects I though no way. But now since I have read these comments here, I think I owe it to myself to give it a try. The fatigue is like a monkey on my back. Hate it! Have never taken anything for it, so I suppose it is time I do. I will check back when I get up the nerve to start it. Hope it works, I like the sounds of not wanting to eat, could be a good thing. Glad I found this site :)

November 12, 2011 at 9:16 am
(40) ann says:

1st off Im so glad to read that many skip days on nuvigil I do it tostretch my supply as well as have some mellow do nothing days. I started nuvigil July of 2010 my husband was going into surgery for esophageal cancer and I told my doc I needed to be able to get through his journey and care for him. IT WAS A GODSEND!! Not only does it help with the fatigue but it also helped with my balance issues, I havent had to use a crutch or walker since taking it. My husband passed away this August and with weather changes and stress, greif, etc.. I have had more flare ups but can accept that as I am so greatful I was able to focus soley on my husband. When my doc prescribed nuvigil he did say “it helps with SOME ms patients, so glad it helped me and so many of you but does explain why it doesnt help all. I wonder if a study would show why such a difference?? I personally think that since neuroligists are aware of the benifits to so many they should submit reports to the FDA and perhaps ALL insurances would cover it as well a HOPEFULLY lowering the costs! I would love to hear from anyone interested my e-mail is onangelwings at yahoo.com. oh by the way I still nap most of the time but I have also been getting up between 3 and 4 in the morning and hit a wall in the afternoon no complaints though.

January 27, 2012 at 12:58 am
(41) Karla Jackson says:

I have been taking Nuvigil for a year now, but not everyday. Maybe 3 times a month. But lately I have been needing it alot more. However, I sometimes hate taking them because it makes me feel sick for about 4 hours and I only take a half of a pill. While it does help me stay more awake while working, it doesn’t give me any energy. My neuro said it is the least strongest pill and I could do a step up. But, I don’t want anything stronger. Sometimes, I take a half of a half to try to prevent from the sick feeling I get from the rush. I did lose weight taking the pill which made me stop for awhile, although I had been taking them only 3 or 4 times a month. I swtich to the depo shot to gain my weight back which I DID in a hurry! lol – but, I think the side effects are adding to my fatigue which is requiring the need for my nuvigil more often. Since my insurance doesn’t cover it, I don’t want to go through them too fast. I have had my 30 day bottle since August 2011 it’s now January 2012

February 20, 2012 at 4:03 pm
(42) gail ketch says:

I have ms with bad fatigue for years.When I think the fatigue can’t get worse it does.I tried a low dose of nuvigil and it has given me uncontrolable tremors.I spent years trying to control tremors which drove me crazy.Now here I am feeling horrable.I am not taking this pill anymore.

March 5, 2012 at 4:53 am
(43) artistic1 says:

I’ve tried both Provigil and Nuvigil. Provigil worked great for about a year and then I started getting severe headaches, Right before this–after an increase in my dosage I started becoming obsessive-compulsive, repeating actions that I couldn’t–no matter how much I wanted to, couldn’t stop. I’d never had episodes like this before, or after first reducing and then (due to the headaches) stopping the Provigil, never again. I was told this was a rare reaction but not unheard of. This past year I was started on Nuvigil. I’m getting headaches again, but not nearly as severe as with the Provigil. My biggest problem with both of these (other than mentioned already) are: if I don’t wake up early enough I can’t take these, but when I do they don’t always keep me awake. They usually wear off in the afternoon (even if they keep me awake otherwise). Unfortunately the length of time they are effective varies so I while I will often wait until around noon to take the Nuvigil, sometimes (when my fatigue symptoms are less) I’ll be up later than I intend. I have no other side effects. Well, other than this: My appetite is less, but I have also experienced foods tasting off. I don’t know if this is neurological or a side effect as I will have this issue even when I don’t take Nuvigil (or Provigil). My neurologist said it may be focal siezures instead.

March 15, 2012 at 8:15 pm
(44) Sue W says:

I started with Provigil then switched to Nuvigil. Dr, prescribes 2 250 mg pills a day. Insurance will only pay for 30 each month so I try to take a half tab or go without once in while but now I’m so addicted to them I usually have to pay for some myself and they are ridiculously expensive. Nothing else helps my chronic fatigue. I get samples from my Dr. when I can . And I don’t care if I am addicted. If I find something that helps my MS I am going to take it.

March 31, 2012 at 4:01 pm
(45) Carol says:

I am so glad to have found this thread. Provigil was a life saver for me because it helped so much with fatigue. Had to stop taking it while pregnant and nursing and by the time I started again, my insurance sent notice they will no longer cover it, I have to take Nuvigil. I take the Nuvigil and feel so wired, but still tired. Can’t sleep at night, then the next day I feel like I have a hangover. Looks like Provigil has now been approved as an FDA approved treatment for MS related fatigue, but now BCBS won’t cover it???? I don’t understand that :( I keep hearing that Provigil is coming out in generic form. Does anyone know if it will be covered again by insurance companies since that should be cheaper than Nuvigil? Does anyone know when the generic is due to be available? It is so depressing to have something that works so well made unavailable to you. I am wondering if the out of pocket expense for generic might be somewhat comparable to what I pay in co-pay for Nuvigil. I am just glad to see it isn’t my imagination thinking what Nuvigil is doing to me.

March 31, 2012 at 4:01 pm
(46) Carol says:

I am so glad to have found this thread. Provigil was a life saver for me because it helped so much with fatigue. Had to stop taking it while pregnant and nursing and by the time I started again, my insurance sent notice they will no longer cover it, I have to take Nuvigil. I take the Nuvigil and feel so wired, but still tired. Can’t sleep at night, then the next day I feel like I have a hangover. Looks like Provigil has now been approved as an FDA approved treatment for MS related fatigue, but now BCBS won’t cover it???? I don’t understand that :( I keep hearing that Provigil is coming out in generic form. Does anyone know if it will be covered again by insurance companies since that should be cheaper than Nuvigil? Does anyone know when the generic is due to be available? It is so depressing to have something that works so well made unavailable to you. I am wondering if the out of pocket expense for generic might be somewhat comparable to what I pay in co-pay for Nuvigil. I am just glad to see it isn’t my imagination thinking what Nuvigil is doing to me.

May 6, 2012 at 3:32 pm
(47) Duckfan says:

My husband was prescribed and given a sample of Nuvigil by his Neurologist. It worked so well for him and we were excited that finally something made him feel more alive. Then BCBS and Medicare turned it down because it’s not a treatment for MS. We tried a prescription for Provigil and they turned that down too.

We’re still trying but it’s so frustrating not to be able to get something that helps so much. The cost to pay out of pocket was to much for us to handle. Nuvigil is involved trying to help but I don’t know how much they’ll be able to twist BCBS’s arm.

Seems like a pretty good drug to treat MS fatigue.

May 22, 2012 at 2:01 pm
(48) Denise says:

I have had M.S. for 10 years.I suffer from extreme fatigue.I was on Provigil in the early years,but I felt gittery and then an afternoon crash.When my Dr.had me try Nuvigil,it made all the difference.I never felt shaky and my energy lasted at least until the afternoon.I have some trouble sleeping,but I always have since my diagnoses.I was diagnosed with breast cancer and stopped taking nuvigil for about 9 months.I didn’t need energy to recover .During radiation,my fatigue was dibilitating ,but Nuvigil made me feel worse.
Since my cancer treatment is over;I wanted to regain my life and start taking Nuvigil again.Since I stopped taking the drug for a period of time;my insurance will no longer allow it. My Dr. and I have been fighting it.Nuvigil needs to be an “official” M.S. drug for me to have it.I am so frustrated.If I was able to work,and had a night shift,I could get Nuvigil .Something needs to change.

June 3, 2012 at 2:56 pm
(49) elizabeth Yadon says:

Oh my goodness, Nuvigil has sure changed my life. My neurologist prescribed it for my MS fatigue symptoms. I now have 4-5 good hours that I can work again. I am very good at taking it when I need to be most productive, awake, focused. It really, really works well. I have no complaints. I am grateful and happy.

June 6, 2012 at 4:52 pm
(50) Vicki says:

I have myasthenia gravis and am just starting the Nuvigil I also have migraines and now I am alittle leary as alot of you say you get headaches, how bad are your headaches and do they go away the more you take the medication or does it happen everytime?

June 15, 2012 at 10:51 pm
(51) ed says:

I have had a terrible problem dealing with MS fatigue for a long time. I tried Provigil and it just made me feel queasy with a low grade headache. I tried Nuvigil and it is amazing. I still have to take a nap in the afternoon, but I don’t take three naps a day anymore, or think about taking naps constantly. I sleep fine at night, but have a decreased appetite. What can I say, it works for me!

July 18, 2012 at 11:42 am
(52) Stella B says:

Nuvigil…Works for me other than being very expensive it help a lot with my fatigue due to M.S. I’m very HAPPY with it. : )

July 25, 2012 at 6:57 pm
(53) san4039 says:

I was just diagnosed with MS this past Feb and my dr just gave me a sample of the nuvigil. I took it for the first time today and I had work all day. I felt nauseous, dizzy, headache loss of appetite, had to force myself to eat something so I didnt feel like I was going to pass out. I wasnt able to focus on work related tasks because I felt so out of it. Im debating whether or not I should take it again tomorrow and maybe these symptoms will go away or if I just shouldnt chance it since I have another long day at work tomorrow and need to be able to focus. Any advice?

August 1, 2012 at 1:25 pm
(54) mbi says:

Love Nuvigil !
I was perscribed 250 dose, but made me too jittery. I break them in half and now its perfect!! The only side effect for me is the weight loss which I am loving !! My insurance didn’t want to pay, but sonehow a letter from my doctor convinced them, so now its covered. Yee Haa !!

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August 2, 2012 at 10:52 am
(56) Wendy Trull says:

I just began Provigil/Modafinil 100Mg’s a day but get tired about 2pm after taking at 8am everyday. I couldn’t afford the cost of the Generic so I opted for 10 pills to try. It has seemed to help with focus while working from home 8-10 hrs on internet.
I am searching for a cheaper druf I can afford as I have a $5,000.00 deductible every year before my Insurance will cover 100% and this is not my MRI year so I have to pay everything out of pocket while paying for last year’s deductible to hospital (MRI year).
I don’t qualify for assistance because my spouse is self-employed and his business profit’s wipe us out even though that’s not what we actually bring into our household….ugh…crazy…
Does anyone have any suggestion’s on a cheaper druf that works just the same for MS Fatigue? I have taken Phenteramine discovered while trying to lose weight but makes my fatigue triple if used regularly. But it’s affordable and doesn’t really help with the Brain Fog/Focus.
I can stand to lose 30 pounds so that side effect wouldn’t bother me lol…When I am fatigued I subcontiously go for sugar and coffee for energy and end up crashing later….Still learning about MS after being diagnosed at 41 (5 years ago) Fatigue and spactisity are my daily battles oh….how can I forget keeping positive is the biggest battle.
Thanks in advance for your comments

August 16, 2012 at 10:51 am
(57) Val says:

Nuvigil is great. I have MS and it lets me take a nap and wake up and keep on going, instead of keeping me going all day long. I can even work one day a week with it. I have to be careful, sometimes I have energy buy my muscles just give out. But, I love Nuvigil. I sometimes take 1/2 pill a day just to get things done.

August 17, 2012 at 7:31 pm
(58) Bridget says:

I was diagnosed last November with MS. My doctor prescribed Ritalin right off the bat for my fatigue. It worked wonders, however, I was not eating. I lost quite a bit of weight when I didn’t need to. I was having stomach pains and after all the testing, we decided I was starving myself. My stomach needed to eat but my head was oblivious to the fact. I stopped the Ritalin about three weeks ago and my pains have gone away, but I am still not eating a lot and still loosing weight. My new doctor just gave me some samples of Nuvigil today. I hope they work without making me lose more weight.

May 16, 2013 at 7:50 am
(59) Rrenee says:

I began nuvigil 6 months ago and I love it! Before Nuvigil I fell asleep doing everything. Often in the middle of conversatIons and other interactive activities. I could not sit anywhere to do anything and not fall asleep. Now I’m still tired and my body occasionally “shuts down” if I haven’t rested enough or I “over did it” for the day.

I’m happy to say that since starting Nuvigil I fall asleep during activity much less which has helped me regain some of my independence. And it helped me lose some weight. Since my diagnosis (18 months) I have not been able to move much or well due to the permananent damage due to a leision causing constant severe pain and weekness on my entire right side of the body and my left arm. The Nuvigil gave me energy to at least walk my therapy dog a short distance to take her to go potty and helped curve my appitite assisting me to loose an additional 30lbs. (I had lost 30 lbs before the diagnosis with excersizing 2 hours a day and eating well. I still fall asleep but not nearly as often.

*****Does anyone know if the weight loss side effect caps off? Or do you continue to lose weight? I think I have stopped losing weight. Which is fine I’m just curious how the medication works. I’m still not sure why this is a side effect anyway if it is not a drug like ritilan or adderall…

The only downfall is its cost. My insuance pays for it and I just pay a copay but because there is no genric I have to pay significantly more for it. About $25 a month more than generic meds I’m on. And all my meds are picked up in 3 month supplies. But I guess I should count my blessings that it is partially/mostly covered.

June 19, 2013 at 10:35 pm
(60) Shelly says:

My neurologist prescribed Nuvigil for me about a year ago. I described symptoms of my MS fatigue, and he liked how the drug worked for MS patients. Although my fatigue isn’t always present (relapsing/remitting), I take it when I need to. With my two small boys (3 and 6). it is a live saver!

June 29, 2013 at 9:28 pm
(61) Paula says:

My doctor prescribed Nuvigil last Wednesday for MS fatigue, and said it may make at least a modest difference in other symptoms.

I took the first 250 my tablet Thursday morning. On the plus side my verbal and written communication skills were much improved. I didn’t really notice increased energy, but did have a minor headache most of the day.

On the downside, I did not fall asleep until 6AM Friday, then surprisingly was wide eyed 2 hours later. My doc had advised some can take it while others cannot, and an adjustment period was to be expected. So as soon as I woke Friday I popped the second tablet. I grew increasingly ill throughout the day. By dinner my headache was horrible, I turned beef red, was sweating uncontrollably and barely made it to my bed. I felt on th verge of collapse just getting up for a drink or walking a few feet to the bathroom.

Today I did not take one, and although I do not feel so ill today, I had to stay in bed most of the day, sleeping off and on. By afternoon I started to feel well enough to sit outside a bit. However once I made it to the porch and set down, I didn’t have the energy to get back in the house for a couple hours. I was unbelieveably grateful for the remote control on the porch fan. Since then I’ve had terrible leg weakness the remainder of the day, and walking more than a few steps is completely out of the question.

I think I’ll wait a couple days and try half a dose. Hoping it works.

July 15, 2013 at 11:54 am
(62) DeAnna says:

Having tried both I have to say 1/2 provigil 2x’s a day. The second dose before 1pm. Works best me. Occasionally I have some anxiety, for which I have Xanax. (I take half as needed). The nuvigil caused increased anxiety and depression. Also, severe long lasting headaches. The sad part is that whatever works for the patient isn’t the bottom line. The bottom line is the almighty dollar eand the hoop jumping that ins co make u jump through.( often times just to be turned down). I noticed after ins madera try nuvigil and it didnt work I was then able to get provigil once again. Blessings

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January 27, 2014 at 12:24 pm
(64) zeke says:

I am trying nuvigil for fatigue i have a lot of ms sumptoms but doctors have not labeled it ms yet but have me on nuvigil,tizanidine and meloxicam for muscle spazems and cronic shoulder neck pain

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