Provigil

[P.Trish]

Has anyone ever tried Provigil?  I was dx'd with sjogrens 1 month ago. Like many of you, I have most likely had this unwelcome disease for several years (went the route of ID dr, neuro, etc)..  Though feeling yucky at the moment, I am determined to  learn as much as possible, as well as contribute to this group.  My warped sense of humor definitely helps, but my unrelenting fatigue has prompted my primary care dr to prescribe Provigil (taken as needed).  I cleared it thorugh my neurologist and rheumo.  Of course the insurance co initially rejected it, but the dr thinks there is some hope for approval. I curently take plaquenil (400 mgs), aspirin and a low dose of Lisinoprol.  I aso take Fish Oil (prescription strength, 4 per dy). multi vitamins, Vit D and I am gluton-free. Hope you are having a good evening

[A66eyroad]

I don't take it, but I'm interested to see what others say about it.

How wonderful it is to have this forum! I learn so much here!   

[Shade]

Hi all,

I've been taking Nuvigil for about 3 months now and I love it.  Provigil is similar to Nuvigil.  According to my Neuro, in her experience, patients usually have more success on the Nuvigil vs. Provigil. 

If you can get insurance to cover it, definitely give it a try. 

I have brain damage due to inflammation caused by the Sjogren's.  Nuvigil has helped some with my inability to focus on (mentally) and complete simple projects.  Also, a part of the brain damage included a loss of social skills and Nuvigil gives me back the ability to socialize.  (Some days, I'm Little Miss Chatty Cathy.)

My reaction is not the same everytime I take Nuvigil.  Some days there is an improvement, other days not.  I take it in the morning after breakfast so I won't be too wound up to sleep.  If Nuvigil does start interfering with my sleep, I skip taking it for a couple days and then I'm fine.

It's not a miracle worker by any means, but it has helped. 

I wish you the best in getting insurance's approval and hope you see benefits in taking Provigil.

Shade

[P.Trish]

Thanks Shade - a 2nd dr request is going to the insurance. One of the insurance's criteria is "depression due to severe fatiuge and sleepiness" - ain't it the truth

[Suzie]

Thanks Shade - a 2nd dr request is going to the insurance. One of the insurance's criteria is "depression due to severe fatiuge and sleepiness" - ain't it the truth

HA! My problem is proving that it's not "severe fatigue and sleepiness due to depression".

Either/or, wont some one help me PLEASE!!! I'm so worried that if I take one of these pills I'll do to much and flare up.
Do you find it activates your brain so you feel half human again, or does it wind you up and make you whizz around?

[lynnmarie219]

I have taken provigil for quite a while now. When I first took it, it was my lifesaver as I had such severe fatigue and it helped immensely. Then it started to even itself out or my body adjusted to it and did not seem to be helping as much. The doc said I could take 2 ONLY if really needed but I didn't do that.

I then took the med ONLY if I really needed it (not daily) when I was having severe fatigue at work and/or if the fatigue was putting me in an unsafe situation (ie I had to drive and was tired)...did that for a while and now I am back to taking it mostly during the week while at work and helps most of the time. I take it around lunch time and it gets me through the afternoon and evening.

I hope you are able to get the med approved and that it helps you...keep us posted!

[Patze]

I also take it now and then, but the out of pocket costs are a bit too high for my meager purse strings.   Seriously though, the insurance won't cover it so it all comes out of my pocket and I already pay 2-4 hundred a month for meds.

I don't know about you, but I still work full-time and it does work well when the exhaustion increases greatly.  The only side effect I get usually is a residual headache like thingy going on if I use it more than 3-4 times in a week (its a low level headache and I don't take anything for it).

Good luck with it and I hope that it works well for you!

Take care of yourself -

Patze

[slccom]

Shade, I had a Chatty Cathy, too! Thanks for the memory. So far caffeine seems to do the job for me, but I may have to join you on provigil. Sharon

[mlaceyks]

I have taken Provigil for 2 years (200 mg daily) and it has been so helpful for me.  I was wondering at one point if I would have to quit work due to the severe fatigue and with Provigil can now get through most days at work.  It is worth a try that is for sure.  Good luck to you!!

[soycoffee]

Suzie said

. . . wont some one help me PLEASE!!! I'm so worried that if I take one of these pills I'll do to much and flare up.
Do you find it activates your brain so you feel half human again, or does it wind you up and make you whizz around?

I take Provigil daily, and recently my sleep doctor upped the prescription to 200 mg daily, from 150 mg/day. As a rule, I took 100 mg/day but fell asleep at dinnertime watching tv. This sleep doctor seems to have no trouble getting past insurance companies for Provigil coverage -- Nuvigil is another thing entirely. I had a sample of about ten of them once, and it was great, a nice curve of awakeness and energy during the day, bending to less at night, so I could sleep. The cost of Provigil for me is covered by a state program, and the doctor's good words. (I don't know what those words are, but he has a nurse who knows it all, knows all the insurance companies, and gets it done in half a day.)

How does it work? Does it bring about a flare? It does not work instantly in the morning to wake me up -- this is my own idiosyncratic usage. I typically wake up to pee at about 6:15 am and take the Provigil then -- and go back to sleep! The time I actually wake up depends on a number of things, but by the time I am out of bed, the Provigil is working to wake me up.

I would not think it would cause a flare, as it is part of my daily regimen. I have flares every couple of months for four or five days, but they don't seem to be related to anything I'm taking. I've taken Provigil for five years before my Sjögren's went active/flared up bad, so to me Provigil is not flare-producing.

The reason I take Provigil while still sleeping is that Provigil, unlike my limited experience with Nuvigil, does not have a curve of awakeness during the day. If I take Provigil when I wake up, I stay awake longer than when I would like to  get drowsy and fall asleep. Sometimes that's fine. Taking it a couple of hours before my day begins does help to control that aspect of Provigil use.

To me it's a godsend. Otherwise I would sleep the day away, and deal with the world in a haze of sleepiness, a fog that doesn't lift -- very depressing.

I hope you have much success with this drug.
Soycoffee

[lynnmarie219]

It does depend what the provigil is prescribed for in order for the insurance company to approve it...in my experience it is almost always approved if you have sleep apnea or other sleep disturbances.

[MissyLouWho?]

My neuro just prescribed this for my fatigue/ excess sleeping.  I can sleep 10-12 hours overnight and then nap 2-3 hours on a normal day.  ON a fatigued day, I can sleep off and on (getting up to use the bathroom, drink something, try to stay awake and end up falling aslepp again) for 2-3 days if I had a rough couple days before hand.  Just waiting for insurance to approve or disapprove.  I hope they approve it. 

I'd give anything to get out of this fog and remember what I was doing a few minutes ago!  I get sidetracked so easily I burn when I cook, leave every task I attempt half finished, and have anxiety over what I might be forgetting.  I swear I'd do anything to be a normal happy energetic mom for my kids.  My 4 year old has never known the "old" me, and my older kids really miss the "old" me.  I'm praying it gets approved and it turns my life around.  Even if it's only for a few months.

[mshistory]

I'm waiting to find out if my insurance co. will approve Nuvigil. Gosh, I really hate the hoops the insurance co.'s make us jump through to get the treatment we need