Does anyone have information or experience with modafinil (provigil)?

The one symptom that has impacted my life more than any other symptom is fatigue. I have been reading about modafinil. It's main use is for people with narcolepsy, air force pilots, people on shift work (need to be awake in the middle of the night), and business travelers who are making a time change and need to be awake.

However, I have found some people on lupus websites that discuss modafinil (provigil) and how it helps them with fatigue. When used daily, It looks to be effective for a few months before becoming less effective. In order to keep it effective, some people seem to recommend using it just for the critical fatigue days, while others seem to take a few days off from taking it every week (or month).

The only thing I found written about use in people prone to blood clots was this from the pharmaceutical company that makes it:

"People who are taking the anti-blood-clotting medicine (anticoagulant) warfarin should have their blood clotting time monitored regularly during the first two months of treatment with this medicine and after any dose changes."

Does anyone have an information or experience with modafinil (provigil)?

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  • I used to take modafinil, but I am not on warfarin

    they generally increase the dosage once you have been on it a while

    I had problems getting it from the GP as it is very expensive

    It was first prescribed to me by the sleep disorder unit at St T,s

  • It's very sad when a prescription that is working is tough to get due to expense. I understand that modafinil is expensive here in the United States also, but once someone has a prescription for it there are supposedly many online reputable pharmaceutical vendors (and many not reputable -- ughh) at much lower costs. I also understand that since modafinil is not a controlled substance in India, that it can be purchased over the counter there and the cost is much lower. The pharmaceutical industry is big business and the costs and availability often come down to politics.

  • Hi I Think you shall wait for your test result and hear what your APS doctor suggests. If you have got APS (as we think you have) and when you are well anticoagulated most of the symptoms will probably disappear.

    I do not take anything without telling my doctor. It can interact with warfarin. Be careful there! If you are put on warfarin that is.....?

    Hope now for a positive answer and that you will feel better. Fingers crossed as before.

    Best wishes from Kerstin in Stockholm

  • Hi Kerstin! Thanks for the information. :-)

    I was just looking for information -- reading everything I can on APS and there seemed to be a hole in regard to modafinil info. That was the reason for the question -- to increase my encyclopedia of APS. :-)

    I have unusual reactions to medications, so I take very little and add in anything new very slowly. The only things I have taken in the last dozen years are aspirin, tylenol, and amoxicillin. In fact, I went drug free (natural) for all three child births because of potential adverse reactions to the medicines. If and when the doctors prescribe anything, it's likely I'll be slowing them down.

    How many days does it take to get the APS blood test results back?

    Thanks for all the great information!

  • If you have APS and you have multiple drug intolerances and severe fatigue, you may also have Sjögren's syndrome which commonly occurs with APS. The fatigue of Sjogrens is often improved with plaquenil and as Lure said many with APS find their fatigue improves with the proper blood thinning combination

  • Don't take it. This is dangerous stuff. I have narcolepsy. Not just clots, but Google search (mostly narcolopsy sites come up) for Provigil and Lupus Anticoagulant. I got this after taking Provigil. Lost 10 years of my life, health, money. I cannot express my warning here enough. Read about it. Blood clotting and disorders, neck pain, infections. Your life is not worth it!!!

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