Provigil (modafinil) anyone?

Discussion in 'Fibromyalgia Main Forum' started by bct, Apr 9, 2009.

  1. bct

    bct Active Member

    I'd like to hear about your experiences with this drug. My doc. thinks it would be of help to me. It is very expensive, and my medicaid would not cover it, I am sure. But I am willing to scrimp and save if I can just get a few really good days in a month.

    I have pretty bad CFS.

    Regards and Thanks,
    [This Message was Edited on 04/09/2009]
  2. spacee

    spacee Member

    I don't know how old you are or if you want to take it to try to work or just get through the day.

    I have ritalin on hand because I have developed so much daytime sleepiness it is unsafe for me to drive to appts. (I am 59 and do not work). It is a lifesaver to me. But I know that Dr. Cheney is totally against it. While Dr. Bell says it is ok but that if you are in the deep fatigue state, it won't bring you out of it...I do find that to be true. I hope for some good hours a day, not a whole day of good hours.

    The generic is a heck of a lot cheaper than Provigil. Like $10 without insurance.

    Hope you find something that helps you.

  3. gapsych

    gapsych New Member

    In my case, Provigil has worked out very well with no side effects other than a few headaches when I first started. I do not take it every day. I take between 50-100 Mg's. which is not the full dosage you can take. My doctor said that for a lot of people raising the dosage does not give you that much more wakefulness/energy.

    It has never made me high, jittery or feel anxious. I just feel closer to "normal". Too much caffeine makes me jittery. I am also very reactive to medicines, so I lucked out with Provigil. It does not make me crash and actually helps me sleep as I am up longer during the day. In fact, I feel calmer almost like a person who takes Ritalin for ADD.

    My previous rheumy recommended Strattera however since I was already doing fine on the Provigil, I stayed with it.

    Though it is on the highest Tier for my health insurance, I only pay $40/month, I just found out that if I get the bigger tablets and cut them in half, I will only have to pay $20/month. I had no problems with my insurance as I have two sleep disorders and the medicine is suppose to be for people with narcolepsy or excessive day time sleepiness.

    Let us know what you decide.

    [This Message was Edited on 04/09/2009]
  4. DemonFairy

    DemonFairy New Member

    We've both tried it in our household and we think it's great. It doesn't make us jittery at all, like Ritalin, Adderall, etc. We're very sensitive to that because several years ago we stopped drinking anything with caffeine (except for special occasion pizza & Pepsi nights<g>), so we're hyper-sensitive to stimulants. Provigil just seems to keep us awake and alert without feeling like we want to jump out of our skin. We would take it every day if we could, but we don't have insurance and it's cost-prohibitive. One of our fabulous doctors (who has, sadly, since retired) ordered a three month supply of samples from his drug rep for us, and because he ordered such a high dose, we were able to cut it into pieces and make it last like a year. It's so nice when the doctors try to help us out when we can't afford to regularly take the meds that help so much. I can't even begin to express my gratitude when stuff like that happens.
  5. cfsgeorge

    cfsgeorge New Member

    Provigil is not a CNS stimulant like ritalin, adderall, or dexedrine which are all amphetamines. Provigil will keep you awake if that is a problem for you(like narcolepsy), but it will not "stimulate" you physically. I have severe insomnia so i do not need a med that keeps me awake. I did not find provigil to help me with the fatigue.

    On my better days or on special occasions, i will use the amphetamine, Adderall, to give me a little more energy so i can leave the house w/o feeling like "death." It also helps a bit with the orthostatic intolerance. I will caution about the side effects of rapid heartbeat, insomnia and general anxiety so use it only in the early day and only if you're physically moving. Do not rely on any stimulant for our horrible fatigue. It is like giving stimulants to someone with diabetes, cancer or AIDS to treat their fatigue. get it?
  6. bct

    bct Active Member

    Seems like about half were helped, and the other half not. Typical! LOL.

    Well, I need the relief from intense daytime sleepiness the most, I guess, along with some reduction of brain-fog. I don't intend to pop a pill and go running around doing things that I know I can't/shouldn't be doing.

    I have tried dexedrine and ritalin both, but didn't like the "wired" feeling. Just want to be more wakeful so I can concentrate better.

    I'll try to get a few ($$$!!!) and give it a test run, so to speak. My hopes are not set high though....

    Regards to All,
  7. Cinderbug

    Cinderbug New Member

    I have been taking Provigal for 6 or 7 months now.

    It is a godsend for me. It gives me a little boost to get some things done in the morning in short spurts.

    My medicare pays for it but my copay is $75 ( a lot for me ) but I see a huge difference if I forget to take it.

    I only take 200mg a day. No side effects now. The first month I had some headaches but not anymore.

    It was prescribed by my sleep doctor who also prescribed C-pap which I also find to be a godsend.

    So you can add my YES vote!


  8. bct

    bct Active Member

    My doc. gave me a trial rx. for 20 200mgs. Provigil.

    I am going to check around and see what the cheapest price for this amount will be from the larger pharmacies, and buy it. IF it works, he suggests I get it then from Canada where it is a lot cheaper, and I will buy over the internet. My first trial would be from U.S. though -- Walgreens, Costco, or somewhere cheaper than my small town pharmacy.

    I see also that the generic, modafinil, is also available from India, but I am wary.

    PLEASE update me on your experience with Provigil/modafinil for severe CFS.

    Regards to all,
  9. isiselixir

    isiselixir New Member

    hi barry,

    provigil has really helped me a lot. it hasn't given me my life back or anything like that but it has really killed off my extreme EDS that was accompanying my severe CFS. i still can't exercise or go out much but at least i am awake during the day. keep us posted on how it works for you.
  10. hermitlady

    hermitlady Member

    Did you happen to ask your doc for samples? I used to get quite a bit of freebies of Provigil that way. If they don't get samples, maybe the office can contact their drug rep.

    When I did fill the rx, the 200mg pills were $10 ea, and my ins would not pay for it without a diagnosis of narcolepsy etc (listed on the med info as treatable conditions). My dr suggested I order online from Canada, so that's what I did.

    I found a good online pharmacy, "discountdrugsfromcanada" and ordered several times from them w no problems. Their price was much much cheaper, but I haven't ordered in over 6 months so price may be different now.

    If you search their site for Provigil, they list their phone number to call for info. For some reason, they can not list specific pricing details on the internet (Provigil makers are not happy that patients are buying the generic version elsewhere).

    Anyway, if you do end up benefitting from it, you can always call them. I did in fact receive some of my shipments from India, this "pharmacy" orders from other outside suppliers who ship from their location. I always had good service from them, it's a home run type of business, supposedly legally legit, I spoke to them to check it out.

    Good luck, I hope this helps you. Hermit
  11. jmq

    jmq New Member

    I have found it helpful. At first I got a headache from taking it...but over a short period of time, they went away. Now I do not get one at all. I do not take it regularly...only on "special" occasions when I need that extra energy. It does not give me a huge boost...but enough to get out of bed and helps my concentration.

    I am lucky that my insurance covers it! My Rhuemy prescribed it for me.

    Good luck with it,

  12. gapsych

    gapsych New Member

    I just do not understand why Canada has the generic Provigil and we do not. I would be hesitant about ordering drugs on the internet, but that is just me. I would save $20 per month and because of my income, that is a lot.

    I don't think I mention this in the above post but Provigil gives me about 5-6 hours of about 70-80%.

    Otherwise, I am more like 40%-50%.


    ETA It turned out that the 200 mg. tablets which I could split are just as expensive as the 100 mg.[This Message was Edited on 08/13/2009]
  13. bct

    bct Active Member

    You give me hope.
    Very tired today --takes me a couple of days to recover from going to town, which I force myself to do once a week just so I can see the world. The rest of time I spend in my country house---no neighbours--pretty isolated.

    NW Ca. is where I live.

    Isis: don't know whar EDS is..?

    Regards and Thanks again all of you.
    Don't know what I would do without this board.

  14. hermitlady

    hermitlady Member

    Discountdrugsfromcanada is actually a business based in New York, I have spoken to Dave (works out of his home) numerous times on the phone, very nice guy.

    The way it works is he takes a faxed copy of your rx, then contacts pharms out of the country (not just Canada) w your order. That pharmacy then ships directly to the customer.

    The package does go thru customs, he told me on rare occasions that Customs will return the shipment to the pharm if they don't approve. No problems, they just reship...this happened only one time for me. There was no legal problem, nothing, I still got my meds, it just took a few days longer than usual.

    The Modafanil is packaged in boxes containing sheets of individual pills in foil tear apart packs. It's completely legit, packaging just like any other meds, all in English.

    Believe me, I would NEVER suggest this to anyone if I wasn't certain that it's legit. If you don't feel right about it, don't order on the internet. I admit I was concerned at first, but after speaking to my Dr and "Dave" who runs this website, I decided it was safe.

    I personally saved $$$$$, US price was $10 per 200mg pill in all the pharmacies in my town. Only name brand is avail in the US, just like so many other meds, it's still under it's patent and nobody can make generic until a specific number of yrs pass and the patent expires (or something like that). So, I received a discount of $7-8 per pill (depending on the quantity you order), making the cost to me around $2-3 per pill.

    Barry, I know we've posted about our locations before. I'm in So CA, I'm jealous...I would love to move back up North, that's where I spent the first 23 yrs of my life. The smog here is so thick right now that you'd need a chainsaw to cut thru it!:(

    Gotta go, Dr appt in an hour...oh goodie. If I could, I'd get some samples to mail to you. This dr almost always has some, he prescribes it for a lot of different conditions. Good luck.....H
  15. isiselixir

    isiselixir New Member

    Hi Barry, EDS stands for Excessive Daytime Sleepiness
  16. vivian53

    vivian53 Member

    I took Provigil for several years and it helped increase my energy about 50%. When I changed insurance companies I was refused coverage for it. My out of pocket expense was $350.00 so I couldn't continue taking it. I was also told the generic was not available. This was in May.

    This month I started taking Adderall 10 mgs which is a small dose and it helps also. I take half in the morning and half in the early afternoon. I don't get all wired on it so it doesn't increase my pain or fatigue.

    It's interesting to me that before I started taking this amphetamine type drug I had to take Restoril at night for sleep. Since I started I no longer have to take sleeping pills. BTW I don't have ADD.

    Anyhow I would think that much more caution would have to be used on my current medication than on Provigil, for many different reasons.

  17. phonejail

    phonejail New Member

    I asked my dr for something to help with my fatigue thinking he would prescribe one of the traditional stimulants. Instead he prescribed 100mg of provigil daily. My insurance wouldn't cover and it's expensive! (I now get it for about 90% less by purchasing across the border.) Provigil is fantastic! I take 200mg upon waking and within the hour I'm completely awake, alert and focused. There is no jitter or tingle so if you are hoping for some recreational side benefits provigil will disappoint you. Personally, I like those effects, but not all the time. I was just really tired and had tried b12 shots and everything else I could get my hands on to try and fix the fatigue. If you are tired and always need a nap or feel foggy and can't get your work done, provigil might have the dramatic impact it had for me. It feels clear and clean and like I'm not actually on any medication. It doesn't make me irritable or mean like other stimulants can do. I'm now able to get up at 6 in the morning and even 5 or 6 hours is usually sufficient sleep although they seem to be much deeper and restful hours than before I took provigil. I'm hesitant to admit taking provigil or tell anyone how great I think it is because of stigma, but it has helped me in so many ways I felt compelled to share.
  18. bct

    bct Active Member

    Was entirely negative. I was prescribed 10 x 200mg tabs, so I could take 100 mgs. This cost me $140. When I took the Prov. I sweated bullets, especially arm-pits, face and scalp. I felt a little jittery, and my peripheral neuropathy was made worse. I had a slight headache. When I felt that my heart was "racing", I had to take some Valium. I changed my sweat-drenched shirts three time during the first three hours. Much nausea. Insomnia, so had to take a Xanax at 1 a.m. to get to sleep.

    I honestly gave this very expensive drug a good try ... I repeated the above, with same effects, 8 times.

    I would not endorse this drug for MY CFS (since '94), but would not want to discourage others from trying it. I am very disappointed that it didn't work for me. Through the whole experience, my fatigue was not alleviated. My brain-fog MIGHT have been a little less dense, but the trade-offs weren't worth it.

    Phonejail: I see you have just joined and that this is your first post; you have no profile. Do you have a dx. of CFS? Not to be disrespectful, but your post almost seems like it could have been written by Cephalon, the company that holds the patent for Provigil! LOL!!!

    Regards to all,
    Sorry I didn't have a better experience to report,
  19. loto

    loto Member

    My experience with it was short.
    A friend of mine has it, and knows I have daytime sleepiness due to fatigue.
    So, I tried 100 mgs of it one day and it did wonders for me.
    So, I went to my doctor to discuss it and he gave me samples of Nuvigil, which he said is a "purified" verson of Provigil.
    So, I started out taking 150 mg of it, and did great for a few days, then it started making my tongue swell! So, he advised me to cut tablets in half and try 75mg daily.
    After a couple of weeks of taking the 75 mg, I wasn't satisfied. It didn't help me as much as the whole tablet, and I noticed while taking it my mood went low and I became more depressed. So, needless to say, I stopped taking it. That's just my experience with it though. So, I'm still on a quest to find something to give me the energy I desparately need!!!

    PS. If you do happen to try Nuvigil, there is a $50 off coupon you can get online.
  20. prabun29

    prabun29 New Member

    I have been taking it for CFS and it's GREAT for energy!! Talk to the makers of the drug they have a free program for those who can't offered or insurance doesn't pay. GOOD LUCK and feel BETTER!!!