Taking Provigil for MS-Related Fatigue

Lisa Emrich Health Guide March 16, 2009
  • In How to Manage MS-Related Fatigue, pharmacological and non-pharmacological strategies to combat fatigue were discussed.  MS fatigue is not the same as simply being tired, or muscles which are fatigued after a good work-out, or the desire to sleep in on a Saturday morning.  MS fatigue can be debilitating and interfere with daily functioning.

    Even before I was diagnosed with multiple sclerosis, I was T.I.R.E.D.!!!! 

     

    After diagnosis it got worse, to the point where I needed to take 2-3 naps daily just to make it through.  So I mentioned this to my neurologist who gave me some samples of a medication to try.  Those samples were for Provigil, a prescription medication used to improve wakefulness in adults who experience excessive sleepiness due to one of the following diagnosed sleep disorders: obstructive sleep apnea, shift work sleep disorder, or narcolepsy.

     

    Modafinil (Provigil® / Cephalon, Inc.) is not approved for MS-fatigue but is commonly used off-label for that purpose.  When I first tried it, the effect was not immediate.  It’s not the type of medicine which guarantees that you are peppy in 30 minutes.  However, I did start very conservatively by trying just half a 200mg tablet.  After a few days I tried a full tablet and finally had a day where my brain felt “normal.”  I could think clearly and only needed one nap.  What a blessing!

    As I experimented with finding an optimal schedule to take the medication, my neurologist suggested that I take one pill upon waking and an additional half tablet before noon.  That finally provided me with the ability to function through my evening teaching schedule.  I teach music lessons to children and adults on most weekday afternoons and evening.  Before trying Provigil, my fatigue level had reached the point where I was literally falling asleep while teaching piano lessons.  A bit embarrassing and nonproductive.

     

    A challenge with Provigil, however, can be insomnia.  The medication needs to be taken in the AM, because if it is taken too late in the day, you may have difficulty going to sleep at night.  If you can’t go to sleep and end up getting too little sleep, you will certainly be more fatigued and sleepy the next day.  It can be a vicious cycle.

     

    Now, I don’t use Provigil daily like I needed to for a while.  If I’m having several days in a row where the fatigue is becoming oppressive, I will take half a tablet in the morning and maybe the other half tablet at noon.  I find that this gives me just enough assistance to be able to function.

     

    Some people have described feeling jittery or ‘wired’ on Provigil.  I have not felt either.  But my good friend Joan shared with me that it made her suicidal and in fact this is a side-effect discovered during postmarketing reports.  Drugs provide benefits but also carry risks.

     

    I find that a combination of fatique-relieving strategies is most useful.  The activity accomplished during physical therapy sessions has helped tremendously in improving my MS-related fatigue.  Talk to your doctor to discuss how fatigue may be interfering with your daily functioning.  Medication may not be the answer for you.

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    Another problem with Provigil which has been reported by MS patients arises from the fact that it is not FDA-approved for use in MS fatigue.  Too often insurance companies will not approve the prescription without prior authorization, and sometimes not at all.  The current price is about $11 per tablet which, if you need two daily, translates into $660/month or $7920/year.  Not an inexpensive pill.

     

    So for me, Provigil has been a wonderful life-saver.  It helped to bring me to the world of functioning individuals.  Even with the benefits of physical therapy, I still need Provigil on a few occasions.  I'm thankful that it is works and is available when I need it.

     

    What is your opinion and experience?  Have you tried Provigil?  Did it work for you?  Why do you think that's been your experience (it helped or did not help)?  I look forward to reading your responses.

     

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    The following is important safety information for Provigil which is a federally controlled substance (C-IV) because it can be abused or lead to dependence. Keep PROVIGIL in a safe place to prevent misuse and abuse. Selling or giving away PROVIGIL may harm others, and is against the law. Tell your doctor if you have ever abused or been dependent on alcohol, prescription medicines or street drugs.

    PROVIGIL may cause you to have a serious rash or a serious allergic reaction that may result in hospitalization or be life-threatening. If you develop a rash, hives, sores, swelling, or trouble swallowing or breathing, stop taking PROVIGIL and call your doctor right away or get emergency treatment.

     

    PROVIGIL is not approved for use in children.

    If you experience chest pain, depression, anxiety, hallucinations, psychosis, mania, thoughts of suicide, aggression, or other mental problems, stop taking PROVIGIL and call your doctor right away or get emergency treatment.

     

    PROVIGIL does not replace sleep and may not stop your ES (excessive sleepiness) completely. Do not drive or do other dangerous activities until you know how PROVIGIL affects you. Avoid drinking alcohol while taking PROVIGIL.

     

    PROVIGIL has the potential to be abused or lead to dependence. Please use only as directed.

     

    Tell your doctor if you have: history of mental health problems (including psychosis), heart problems or had a heart attack, high blood pressure, liver or kidney problems, a history of drug or alcohol abuse or addiction, or are pregnant, planning to become pregnant, or breastfeeding.

     

    Women who use hormonal birth control may have a higher chance of getting pregnant, while taking PROVIGIL, and for one month after stopping. Talk to your doctor about other birth control methods while taking PROVIGIL.

     

    Common side effects of PROVIGIL are headache, nausea, nervousness, stuffy nose, diarrhea, back pain, anxiety, trouble sleeping, dizziness, and upset stomach.

     

    You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

     

    For more information, ask your doctor, or call 1-800-896-5855.

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    Additional information regarding Provigil can be found on the non-profit non-biased source - Provigil Web.

     

    Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.