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Modafinil for MS fatigue
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Modafinil for MS fatigue

My Neuro prescribed Modafinil to try and combat my fatigue, and I was wondering if anyone here has any exprience or comments about the usefulness and side effects of this drug.

So far I filled the prescription but I haven't actually taken any yet. I would very much like to do away with the fatigue, but I am already taking a bunch of other drugs and am reluctant to add another to the mix.

I'm also not sure what time of day I should take it. I'm prescribed 2 X 100mg per day as required. Hmmm, 2 at once? In the morning or afternoon? If my fatigue hits late in the afternoon is it too late in the day to take it?

Thanks folks,  Mike

26 Comments Post a Comment
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Avatar_f_tn
your pharmacist would not have filled it if your other drug combinations would be counterindicated.

100 is the smaller dose.  start with that one and see how you feel. you might ask your pharmacist how long before the pill normally starts to act.

I take 200mg in the morning which holds me all day.  You can also look the drug up on drugs.com (I think that's it) and it will give you lots of information on the drug.  It's ok for you to take both at one time, usually

your doctor's office should be able to give you additional information plus you can go to the drug's website.

this is the generic name for Provigil which is taken by many with MS, also given for shift workers and narcolepsy patients.

bear in mind (disclosure here) that we are all just patients comparing our experiences and sharing with each other.

good luck.  I'll go check it out and get back to you with a message.  check your inbox later in the day.

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1045086_tn?1332130022
This is generic Provigil Mike.  It is a long acting drug so you will always need to take it in the morning.  If you wait until afternoon when the fatigue sets in you will probably end up tired yet unable to sleep at night.  That's a bad pattern to start.  Never take it in the evening or at bedtime!

You can take both at once or take one at a time.  I'd start with just one in the morning to see how you do with it.  I have no side effects but mine was prescribed for a sleep disorder and I don't know if that makes a difference.  Some people have said they get the jitters with it.  You'll have to take one to find out how your own system reacts.

Late night people will sometimes split their dose - taking half in the morning and the remainder a couple of hours later.  This can get you the greatest effectiveness when you need it most while extending the action over more hours.

I wish your doc had been more specific about how you were to take this Rx but maybe he wrote the script to give you allowances for managing your individual dosing needs.  Even so, a little more guidance is necessary when introducing new drugs.
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1045086_tn?1332130022
--continued
I'm curious if your fatigue lasts the remainder of the day once it starts.  Most people (with or without MS) have a natural down-turn in energy levels once or twice during a day.  After lunch is common and around four or five in the afternoon is another.  If you decide not to use this drug, I'm just wondering if there might be another way to restore some energy.  

Sometimes a change in how activity is paced early in the day can work to a person's advantage by conserving energy for use during the difficult time periods that occur later in a day.  We sabotage ourselves by rushing to get everything possible done in the mornings before our energy stores are depleted.  In reality that can leave us more drained (and stressed) than necessary for anything that needs to occur later in the day.

There’s a few of my thoughts.  I know others here take meds for fatigue.  Maybe you’ll hear from more people once our US holiday weekend wraps.
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803451_tn?1390087022
YOur doc should have told you when to take the med.  It makes me gittery and I only take it when the fatigue is active.  It should be taken before noon.  I am prescribed 100 mg. of Provigil daily.  I rarely take it anymore.

Many times this med interfere with sleep and I believe sleep is a whole lot more healing than a drug.  

When I get my next service dog, I will be sleeping better and I'll let you know if I take the drug again...so many more benefits from alternative medicine such as the help of a service dog - a good one - well trained.
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Avatar_f_tn
I also take it. (Generic Provigil) When I first started it I was pretty sick the first week, but I was fine after that.  It has definitely make life a a lot easier for me. I am now up to 200mg/day. I hope that it keeps working but I am not sure that I could function without it. I am preparing for life as a single mom and I have to work full time. I can't miss work or have my work suffer due to fatigue. I still get fatigued, but it's milder than it used to be. This med has been a God-send. I hope it works for me for a long time.

Good luck! I hope that it works for you with few side effects.
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751951_tn?1299202836
After reading your post, Mike, I read up on this drug through Dr. Google & Associates.  Sounds like something I would like to discuss with my doc, next time I see him.  I could use some help in this area.
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1140169_tn?1370188676
Thanks everyone for your helpful input.

Sarah, I think I'll take your advice and start with one 100mg in the morning and see how it goes.

Twopack, you're right when you said maybe my doc wrote the script to give me allowance to manage my own dosing needs. That's exactly how he handled it when he put me on Gabapentin, which I am currently taking 1200 to 1500mg daily, but have the OK to increase to as much as 3600 daily if need be.

Usually my fatigue strikes in the afternoon and usually last the rest of the day. Sometimes I wake up feeling beat and then feel fatigued all day, even after a nap or two. These are the days I intend to take Modafinil.

Irene, I'm with you, I'm only planning to take it when I feel I really need it (if I find I can tolerate it)

Ojibajo, your mentioning having to work full time reminded me why I turned down the rx the last couple years. I can't work anymore so I figured why take drugs to stay awake when I don't have anything I NEED to be awake and alert for. I've now decided it'd be nice to have the energy to do the things I WANT to do.

Hey Dan, that's probably one of the best things about this forum, it gets us thinking of ways to treat our sx's that we may not have otherwise heard of.

I read on the info sheet to not drink large amounts of coffee....ohoh...I usually drink 4 or 5 mugs in the morning...I wonder if this is going to be an issue. I really like my coffee.
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738075_tn?1330579444
Hey, Mike!

I started taking it in August, and it's saving my bacon at work!  I take it only in the morning (just 100 mg), and usually only on work days.  I can't work more than 3 days/week. So, days I know will be long or busy (babysitting GS ferinstance), I definitely take one.  I still get some breakthrough fatigue at about 2 pm, but it's WAY better than when I don't take it at all.

Doesn't all that coffee play he!! with your bladder?  If you take the Modafinil, you may not crave that 2nd (or 3rd or 4th) cup.
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751951_tn?1299202836
Hmmm ...   Hafta think that coffee thing through!  Morning coffee has been part of my life as long as i've been on day shift!
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559187_tn?1330786456
I have been taking this drug for 2 years now a d like G-G said it saved my job. Honestly I would ha d had to stop working because of my extreme fatigue. It is worth your trying to see if it works for you. I feel that I ha e been able ymto a part of my life back.

Best of luck.

Julie
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572651_tn?1333939396
Funny you ask about this because I just turned on the computer to ask my neuro to order my refill. I have now been on it a year and tried to go the past two days without it .  What a difference!!!

My GP and I talked about this last month and she said she really likes this rug and has several people - especially shift workers- who use it and it is not addictive.  The difference with the provigil/modafinil are sometimes subtle because it doesn't rev you up like an amphetamine.

Try it Mikey, you might just like it.
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1225331_tn?1333369369
How does everyone get this prescribed for them? I've asked my neuro for it and she won't prescribe it. She says the insurance companies won't cover it unless you have narcolepsy or are a shift worker. What's the trick to get it approved (and to get your neuro to prescribe it)?

I was just talking to my aunt who has fibro and she says that she takes it, as well. ??? Is my neuro giving me the runaround?

Thanks!
Kelly

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Avatar_f_tn
your doctor just has to write a "justify" letter to the insurance company,
you have a lazy neuro
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1225331_tn?1333369369
Oh yes, I'm very aware of her laziness. Not many neuros to choose from around here, though.

She's already said she won't write a script for me. And anything extra that she has to do for you, she send you an extra bill for it - ie if you call her with questions or if you forget to tell her about needing multiple refills during your appt, and then she has to spend extra time of her own doing this for you - then you'll get a bill from her.  Whenever I mention to any doctor / PT person that I'm going to her, they cringe & make a face & say they've heard not so nice things about her from their patients.
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Avatar_f_tn
wow
now I know why I gladly drive 465 miles to see my neuro!
that sounds highly unethical........

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1140169_tn?1370188676
Popped my first 100mg Modafinil about 45 minutes ago,,,,we'll see how it goes.

Sarah, I drive a long way to see my Neuro too, well, my wife drives and I ride. 450 kms each way (about 270 miles each way) It's worth travelling to find a Neuro you trust and are comfortable with, as I'm sure you'd agree.
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1225331_tn?1333369369
Wow, you both drive really far for your neuros!  I'm glad you have good ones that you've found.  I have to see mine every month - so that would be pretty difficult.
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1337734_tn?1336238191
I got the  RX for this a while ago but never filled it because like Mike I aca't work any more and I am trying to eliminate all the drugs that I don't have to take. Although fatigue is a problem I seem to get by with my 1.5 hour daily nap! Aah the joys of early retirement...LOL
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1140169_tn?1370188676
I don't think the one 100mg pill did anything for me at all :(  By 3 pm I was wiped out and I had to pass up an invite to supper due to fatigue.

Slept well last night, only got up once for a bathroom call, but woke up feeling worn out.

I am taking an rx for slightly high blood pressure, so I'm not really comfortable with taking 200mg Modafinil in case it increases my blood pressure.

I also had a cough throughout the day yesterday. Not sure if this was just a coincidence or an irritating side effect.

I'm very dissapointed. Maybe I expected too much.

Debgen, for now I think I'll just stick to napping too.

Hey Lulu, nope, I guess Mikey don't like it ;)
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572651_tn?1333939396
don't give up on it quite yet.  Maybe you should try it for a week and then decide if it makes a difference for you.You might be surprised, Mikey.  :-)
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Lulu's right Mike, it takes a few days, took me abut 5 and now I can really tell the difference, bump up to the 200mg.
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1045086_tn?1332130022
Ever had a sleep study Mike?  Sleep disorders are very common in PwMS.

You might need the 200mg but this drug has never been one that gives me a clear indication of just when it is 'kicking in'.  But then again, I fall asleep drinking coffee :)  There isn't much that gives me a true boost.  Provigil and Nuvigil never gave me energy.  They just keep me from nodding off while doing important things like walking or driving.
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1140169_tn?1370188676
I never did have a sleep study, Twopack. It was something my Neuro said he was going to arrange more than two years ago, but I never got a call about it and I never followed up by asking about it. I guess I just don't really want to deal the possibility of needing a cpap machine, ignorance is bliss.

Lulu and Sarah, I was hoping I would be able to take this drug on an as needed basis. I don't want to take it on a daily basis, but would like to be able to use it to see me through my worst days, or maybe use it on days when I have plans I don't want to change.  I think I'll try a 200mg dose the next time I wake up still feeling exhausted and see what happens.

Does this drug have to build up in ones system before it becomes effective? If so, would my plan to use it only as needed be a faulty one?
My Neuro said it could be taken 'as needed' when I asked, but he also said "try it and see if it works for you...if it doesn't don't take it".  He never offered any alternatives, I never asked for any.

I'm thinking I need to discuss this issue with my GP, he's got a better grasp on my all around health picture, although I'm not sure how much he knows about MS fatigue.

Still confused, but I'll sort it out sooner or later. Thanks all.

Mike

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1045086_tn?1332130022
OK Mike, that's honest.  Just remember, ignorance may be bliss but it may also be tired bliss.  It may also be hypertensive bliss.  Sleep apnea is a known contributor to high blood pressure.  

CPAP gets a bad rap on looks alone.  I admit it isn't my favorite sleep wear preference but when the root problem is a sleep disorder, CPAP is the most effective treatment.  It allows a person to enter restorative stages of sleep and it does so without pharmaceutical intervention.  That's a big plus to me.

When CPAP works, an awake and alert brain and body provide a big payoff to continue using it.  I had to start taking Provigil/Nuvigil because CPAP can't do the whole job for my sleep disorder.

My blood pressure and heart rate have been monitored closely to evaluate any changes that might possibly be related to taking Nuvigil. (They checked out a couple of my other meds as well.)  As the sleep specialist neuro told them - it isn't an amphetamine, it isn't a general stimulant, it works within the sleep center of the brain to promote wakefulness and it doesn't generally cause changes in BP and/or heart rate.
(continue below)
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1045086_tn?1332130022
(continued from above)

Shift workers use modafinil only on those days they work odd hours.  My prescriber says he has taken it himself on an occasional use basis.  I'm not aware of any pharmaceutical need or advantage for daily use.  When people use it for chronic conditions they likely take it every day to treat symptoms that would otherwise plague them everyday.  You can take it either way that suits you but (imo) a single day trial is seldom long enough to make a good judgment about any treatment.

You are right about getting more direction from a doctor.  I think I’d go back to the prescribing doc though.  Here in the states docs aren’t usually crazy about it when a different doc tries to manage a therapeutic intervention they initiated (unless approved or consulted out).  It could be different in Canada.  I’m just not sure a GP is familiar enough with MS, sleep disorders or this drug to be your go-to guy.  (Just something to think about.)

Hope I didn’t go overboard here.  I’d like to see you enjoy life more - one day at a time - every day - the whole day long.
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1140169_tn?1370188676
Thanks for the well thought out response! Your insight is bang on. You didn't go overboard at all, and I appreciate your gentle nudge regarding my sleep study/ CPAP issue:)

The reason I'm going to discuss my options with my GP rather than my Neuro, who rx'd modafinil, is simple because I just had my annual Neuro appt, and it's a pretty long road trip to the MS clinic where he works. It's actually my GP who renews all my rx's, except Rebif, regardless of who initiated them. This seems to be the norm here, at least with my doctors.

Your comments have prompted me to bring up the sleep study issue as well. My fear of possibly having to use a CPAP stems from some negative feadback from my sister, who has sleep apnea and uses one. She has had difficulty finding a mask that fits comfortably, and my brother-in-law says the unit's quite loud. Of course it's quite possible I don't have apnea...

Anyway, I'm feeling pretty good about how I'm going to proceed from here, in no small part thanks to your post.

Mike

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