Discussion in 'Fibromyalgia Main Forum' started by jaltair, Aug 18, 2005.

  1. jaltair

    jaltair New Member

    Just a note on my experience with the Provigil.

    After I posted requesting the name of this drug and got the answer, I spoke with my doctor about trying it. She gave me a sample to last for 7 days. I found that it did help me to be much more alert and active during the day. When I called her office to let her know about the success, staff told me that they would let her know so that she could phone in the prescription. I thought, "great! Finally something that actually makes a difference!"

    Well, I soon learned that the diagnosis of CFS or FMS was not sufficient as the drug could only be prescribed for people who have had sleep disorders such as narcolepsy, etc. Was I disappointed!

    If anyone on this Board has taken this medication other than through samples from their doctor, how was the doctor able to prescribe the medication? I'd really like to be able to get a prescription so that my life will have more energy .. only 19 months until retirement ... I need the help!!!
  2. zuzu2

    zuzu2 New Member

    in this post u didnt mention if u are ill, and have been diagnosed with any health problems. Provigil is indeed indicated for narcolepsy, however there is off-label prescribing of it which is legal. that means a doctor can prescribe it for other health reasons besides narcolepsy. this off-label prescribing is common with alot of prescription medications. alot of ppl with CFIDS and MS are currently taking it to help them cope with the fatigue. and yes, i have been taking it for about 15 months. zuzu
  3. Flaming

    Flaming New Member

    I don't know anything about the med but have read and heard fibro being considered a sleep disorder not just the number one symptom. If you research you may find this and present to dr.for consideration.
  4. moxiepup

    moxiepup New Member

    Hi like you my Dr gave me samples last wk., she told me to cut them in half which I have been doing.

    The first one I took I took it went back to sleep for about an hr got up and felt like a million bucks, nothing hurt and I was more alert than I have been in 2yrs.

    Believe me I was excited finally something that works, I have been doing that for about 5 days. Today I did the same thing and nothing when I stayed up, I took it this am but stayed up and it was just like I took nothing, I can't figure this out.

    If anyone has any ideas can you let me know. All I can think is I need to take a whole one now, the half is no longer working on me or something.

    What dose do you all take? as far as Ins., mine hasn't denied anything with the DX FMS/CFIDS/CEBVand believe me I have tried everything new that has come out.

    thanks for any help you can give me like I said I was really excited. The poster who said they have been taking it for 2 yrs what dx did they put down for you, if you feel comfortable telling me.

    Thank You,

  5. jaltair

    jaltair New Member

    I took the whole dose as I was told to do by my doctor. The whole dose worked wonderfully!

    My understanding from my pharmacist is that Provigil is a drug that will only be given by prescription when a doctor "justifies" it by a diagnosis related to a sleep disorder (very specific diagnoses are given that have to be held to). I don't think that my doctor understood how rigid the restrictions on giving the medication were. I am trying to contact the doctor and find out more information and will let everyone know what I find out.

  6. petsrme

    petsrme Member

    My rheumy prescribed about two years ago for my fatigue. My insurance company refused to pay for it so I couldn't buy it. Your doctor can prescribe it for you even if you don't have narclepsy, but your insurance will probably not pay for it. If you can afford ot buy it for yourself then I believe you can. I am assuming that you found out your insurance wouldn't pay for it. Is that what you meant? I hope you can find a way to take it since it helped you. If your insurance is the problem then the only chance to get it would be if you have a sleep study and they can show you have a form of narclepsy or sleep disorder. Good luck to you.
  7. elsa

    elsa New Member

    Can be written for off label purposes. My Doctor was initially worried about that same issue. Not any longer as I have been on it for 16 mths now.

    FM/CFS causes sleep disorders. Our doctors are having to rx sleep medications, stands to reason that a rx for daytime is also in order.

    The description for use of provigil states " For excessive daytime sleepiness". We qualify so there should not be any problem for your doctor writing a prescription of it for you.

    Also, provigil was not only approved for narcolepsy, but also for swing shift, 2nd & 3rd shift workers who had to get use to keeping bizaar hours.

    Everything should be o.k. for you. There are just too many of us taking provigil for this to be an issue with your doctor. Why would he/she send you home with samples and then say you can't have a rx for it? Doesn't make sense.

    Doctors prescribe sooo many medications for us that are "off label" as there are not any medications created specificalyy for FM/CFS. There's just no way to avoid it.

    Good luck to you. I'm glad it was helpful for you and I hope this helps some.

  8. bioman85

    bioman85 New Member


    I had an overnight and next day sleep test done (covered by my insurance) and they found that I had "idiopathic hypersomnia", which meant I was tired in the daytime. This is a specific diagnosis and Provigil can be prescribed for this.

  9. jaltair

    jaltair New Member

    This in encouraging .. what I'll do is discuss this again with the pharmacist to see if it's an insurance issue. I was under the impression that it was a drug use issue. Then, I'll talk with the doctor to see what in the heck is going on with all of this. Maybe it's just that she doesn't understand how to justify use of the drug? I wouldn't think so. My husband and I also thought that it was a little strange that she'd give me samples and not be able to order the drug for me! My husband noticed enough of a difference to keep prodding me on to get it and to speak with the pharmacist and doctor.

    If so many of my sisters and brothers with these DD's are able to get the drug, then so should I.

    Thanks again for the "hope!"
  10. elsa

    elsa New Member

    Are you not getting the prescription for provigil filled based on what your pharm. says? If that is the case and you have the written prescription from your doctor, then the pharm has to fill it.

    The pharm is not an MD and they are not trained or legally certified to prescribe medications. They are often times more knowledgable then MD's on a rx, but they cannot countermand a MD prescription.

    I didn't quite understand ... fibro fog LOL .... Is it the doctor holding you up or the pharm.?

    I also wanted to add that my insurance pays for my provigil. We have a heafty co-pay on all of our rx's, but we also have a "no questions asked" or "prove you need it" situation to deal with.

    Good luck hun .... you know, doctors often prescribe ritalin and adderall for our daytimes sleepiness too. These are not as safe as provigil, and are written off label too ... but rx'ed just the same.

    Talk soon,

  11. abbylee

    abbylee New Member

    Employers pick the insurance plan that they buy for their employees. If your plan won't cover the drug for you, go to HR and complain. They can call the insurance folks and override the denial. (If they tell you that they can't they are not being truthful.)

  12. TXFMmom

    TXFMmom New Member

    Honey, I have had my sleep disorder confirmed by a sleep study.

    Even though Provigil was approved by the FDA for use in narcolepsy and accompanying symptoms, it can be prescribed for physicians for what is known as "off lable" uses, when appropriate.

    My insurance company pays for mine, and my Sleep Doc, my Internest, and my FCC doc all prescribe it.

    I do not say it is for everyone, but I used to take it PRN, or as needed, when I had a lot on my plate, or when I had to drive.

    The FCC doc said to take it every day, and I do, except when I forget and the stuff works.
  13. elsa

    elsa New Member

    For Jaltair .... question posted above ....

  14. Daeshay76

    Daeshay76 New Member

    i have been taking this for 2 years now I started out on 100mg one pill when I wake and another pill at noon and about a month ago it was increased to 200mg once when i wake and another one at noon...when i first started taking this it was great but your body will build a tolerance to it so you will have to keep increasing the dosing on it. i am rx'ed it for CFS and it has been a great med but now it is not working like before so me and the doc are talking about adderall for the CFS when i am ready to try for my energy back.but i am sure alot of my CFS and my tiredness is in part with the pain meds i am on as well.
  15. dafoefan

    dafoefan New Member

    I have Blue Shield (HMO), and they will only pay for it if you have a diagnosis of narcolepsy. My shrink gave me lots of samples for a while. I asked for a prescription and it was $240 for one month. Needless to say, I don't take it anymore.

    I believe that it is based purely on the policies of your insurance carrier. So to answer your question, the dr can prescribe anything, but your insurance doesn't have to pay for it. If you still want it, you have to pay out of pocket.

    I would ask for more samples. My shrink told me she has plenty of them. She told me to remind her when I made an appointment and she would have them for me.

    Good luck!
  16. jaltair

    jaltair New Member

    Today, I called my doctor's office to see what were up with the Provigil only to learn that (per the MA) they had submitted the order to the pharmacy August 5, but never received a form to complete for authorization from the pharmacy. I then called the pharmacy and learned that they sent the authorization, and the girl at the pharmacy had the name of the girl at the doctor's that she had spoken with on August 5. The pharmacy agreed to resend another form to the doctor to complete.

    I then quizzed the pharmacy regarding the authorization process and why it was required. Evidently, the Provigil has to be authorized for my insurance to cover, as it's a class III drug. Off-label for FMS/CFS prescription. I checked both of my insurances, and of course they both require the authorization. I don't know how easy getting an authorization will be. I'll keep you informed of how things go. Thanks for all of your suggestions, etc. I really appreciate them. I'm so tired from doing all of this "stuff" to get the darned prescription, but know it'll make a big difference in how I feel.

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