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Hi Mark,

There is another thing about Provigil that my rheumy told me when I requested it

I need to

share. He would not let me have it since I also have fibromyalgia. He said the

drug was

designed for people with narcolepsy and since I have a hard time sleeping at

night anyway

would not make any sense. I had to agree although, I really thought we had

something

going there for some energy. I agree with Kathy when it comes to adding

another pill to our

daily/weekly total. UGH!!! I have only lately started taking my vitamin B

complex again. I

think it has done wonders for my energy level. Good Luck on whatever you find

that will work

for you.

Janet in Ca

PS. The added energy could also be the beautiful weather here today. 80 degrees!

WOW!!

-------------- Original message --------------

From: " verkhoturye " <radiomark@...>

> Who normally would prescribe Provigil for fatigue, your primary care

> doc or the rheumy? I'm on Humira now once a week for PA. I'm hoping

> that the increased dose will help the fatigue. I keep hearing good

> things about Provigil. I need some energy back to be effective in my

> work.

>

> Mark

>

> [Editor's Note: Mark, in my case, my rheumy was willing to prescribe Provigil

> when I complained of severe fatigue. At that time, I opted not to go ahead

with

> it as I felt I should pursue other ways to relax first and I didn't really

want

> to add another drug to the regimen. I find that taking melatonin at night to

> get more sleep and exercise (in my case, swimming) have helped to give me a

lot

> more energy on most days. Ha, it also helped that I decided to retire on my

57th

> birthday. I suggest talking to your rheumy (because he or she needs to know

all

> meds you are on anyway) and if he/she is comfortable with prescribing

Provigil,

> then that's probably the way to go because the rheumy is the one who is

> reviewing your bloodwork on a regular basis. Kathy F.]

>

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Guest guest

Hi Mark,

I am on Provigil, and I can't say enough good things about it. I

was actually referred by my rheumy to a neurologist because I was

having symptoms of " hypersomnia " . (Apparently it isn't normal for a

33

year old to be able to sleep 15-18 hours per day:-) Of course, they

made me quit the pain meds for two weeks to make sure it wasn't

that.

That was fun.

Now that I am on the stuff, my rheumy is quite happy to continue

prescribing it. It has made a HUGE difference in my life!...and my

husband's since I have more energy for things like cleaning the

kitchen!!!

Good luck,

DJ

>

> Who normally would prescribe Provigil for fatigue, your primary care

> doc or the rheumy? I'm on Humira now once a week for PA. I'm

hoping

> that the increased dose will help the fatigue. I keep hearing good

> things about Provigil. I need some energy back to be effective in

my

> work.

>

> Mark

>

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Guest guest

I appreciate the responses I've gotten regarding the Provigil. It's

interesting that the fatigue is killing me and yet I have such I hard

time sleeping at night. Right now it is 3:24AM and I can't sleep.

When I take my Ambien I have such a hangover the next day, even when I

take a half. Maybe the Ambien is contributing to some of this

fatigue. If Provigil causes more insomnia, then that's probably not a

good thing.

I also think I recently had an allergic reaction to my Humira. My

face has been getting beet red and burning and I have had some

swelling in just the tip of my tongue....kind of weird. My rheumy

doesn't think it's the Humira. Told me not to take it this week (I'm

on once per week) and told me to go see my family practice doc about

my other meds. I wish he would just manage it all...

Thanks again Kathy, Janet and everybody else for being so supportive.

I know that pain is such a big issue for the real severe cases. I

get pain about everywhere like everybody else, but it's the darn

fatigue and just feeling sick all the time that brings me down.

Good luck to everybody and keep the faith!

Mark

[Editor's Note: Mark, please let us know what you decide to do re the Provigil.

You might want to see if your doctor will recommend that you go through a sleep

study at a sleep clinic. There may be other things going on that Provigil

wouldn't fix. Your swelling DOES sound like a reaction to Humira. If you go

back on it, try taking Benedryl about 15 minutes BEFORE you inject. If you

forget, try taking it as soon as you become symptommatic. Your symptoms sound

like an allergic reaction which causes your bodies to produce histamines so by

taking an antihistamine, you might be able to eliminate or greatly reduce the

symptoms. Kathy F.]

>

> Hi Mark,

> There is another thing about Provigil that my rheumy told me when I

requested it I need to

> share. He would not let me have it since I also have fibromyalgia.

He said the drug was

> designed for people with narcolepsy and since I have a hard time

sleeping at night anyway

> would not make any sense. I had to agree although, I really thought

we had something

> going there for some energy. I agree with Kathy when it comes to

adding another pill to our

> daily/weekly total. UGH!!! I have only lately started taking my

vitamin B complex again. I

> think it has done wonders for my energy level. Good Luck on

whatever you find that will work

> for you.

> Janet in Ca

> PS. The added energy could also be the beautiful weather here today.

80 degrees! WOW!!

>

> -------------- Original message --------------

> From: " verkhoturye " <radiomark@...>

>

> > Who normally would prescribe Provigil for fatigue, your primary care

> > doc or the rheumy? I'm on Humira now once a week for PA. I'm hoping

> > that the increased dose will help the fatigue. I keep hearing good

> > things about Provigil. I need some energy back to be effective in my

> > work.

> >

> > Mark

> >

> > [Editor's Note: Mark, in my case, my rheumy was willing to

prescribe Provigil

> > when I complained of severe fatigue. At that time, I opted not to

go ahead with

> > it as I felt I should pursue other ways to relax first and I

didn't really want

> > to add another drug to the regimen. I find that taking melatonin

at night to

> > get more sleep and exercise (in my case, swimming) have helped to

give me a lot

> > more energy on most days. Ha, it also helped that I decided to

retire on my 57th

> > birthday. I suggest talking to your rheumy (because he or she

needs to know all

> > meds you are on anyway) and if he/she is comfortable with

prescribing Provigil,

> > then that's probably the way to go because the rheumy is the one

who is

> > reviewing your bloodwork on a regular basis. Kathy F.]

> >

>

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Guest guest

Dear Mark and Everyone interested in Provigil,

I tried it about 3 years ago when it first came out and my doctor only gave

me 100mg a day. I personally couldn’t tell if I took it or not so I quit

taking it. Then about a year ago another doctor suggested it again, but

told me that 100mg isn’t enough for most people with severe fatigue

problems. He gave me 200mg and said we could go up to 400mg a day. Since I

’ve been on 200mg, it has really made a huge difference with my sleep

problems. It doesn’t keep me up at night, and I was worried about that

since I do have Fibro as well as PA or RA. I’ve tried 300mg and I thought

that did affect my sleep so I went back to 200mg. It makes the difference

on whether I can get to my doctor appointments some days or if I just want

to go out to eat with my family. So for me, it’s been really worth it.

My daughter has a severe case of Fibromyalgia and she is on 400mg a day.

She is still in college and is finally finishing up next semester. For her

it has changed her life. She was to the point that just getting to class

was an impossible task her fatigue was so bad. Before Provigil there wasn’t

anything at all that she could take to help her. I’m not saying that her

fatigue is gone; she still has bad days, but not nearly as many as before.

So for both of us, it has been a great drug, though I know a lot of doctors

are scared of it and won’t prescribe it to their patients. If you fatigue

is bad and you don’t have any heart problems, then it can really be a

lifesaver. I know all these drugs have side effects; I’ve been going crazy

lately with Arava after being on it for 3 years. So I can’t say the

benefits will last forever, but for now I’m glad I have it. By the way, we

both take B12 everyday as well.

Take care, Fran

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Guest guest

Who normally would prescribe Provigil for fatigue,

> your primary care

> > doc or the rheumy?

Hi DJ,

Does Provigil make you " wired " ? The sleep clinic is

suggesting I take that for narcolepsy and fatigue, but

I'm afrad of not being able to sleep at all. I can't

handle caffiene, had a Mountain Dew during a seminar

once and couldn't sleep for two days. I even have

problems with over-the-counter sinus medication

keeping me awake all night. Is Provigil likely to do

this also? Thanks for any input :)

warm blessings,

jane> >

________________________________________________________________________________\

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(and love to hate): TV's Guilty Pleasures list.

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  • 1 year later...
Guest guest

I've taken Provigil as well. Along with people with

narcolepsi, it's also used for jet lag by business

people flying across time zones.

I found it had a definite let down effect as it wore

off, but while it was in my system, I could at least

focus and maintain alertness.

I've since moved on to Rhodiola extract which I put in

water in the morning when I take my supplements. I

find that is a little less effective, but it also

clears up my fibro/cfs fog and there is no let down

effect when it wears out of my system. I'm also less

likely to overdo because it doesn't make me feel like

I have more energy than I do.

Janice

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

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Guest guest

Have you noticed that you are irritable and completely exhausted on the days you don't take it?

I take it everyday and if I do not take it, I basically never leave the bed except for a meal and a bathroom break or two. It's the only thing I can take that allows me to work everyday.

Rae Ann

In a message dated 4/15/2008 9:53:48 A.M. Eastern Daylight Time, renee@... writes:

HI, this is . I do take provigil every day when i work, it works on the part of the brain that controls wakefulness and sleep, but not like a stimulant does. It helps to give me the energy I need to work without feeling wired, and helps me to focus as well. It is actually indicated for narcolepsy, but alot of fibro patients take it. I take 100mg in the am and usually 50mg in the afternoon when i work, which is 3 days a week. I do take a lower dose on my days off, and usually one day a week like sunday don't take it at all. You have to watch it though, when you first get on it you may have a ton of energy and overdo it, which I did, and you will definitely feel it the next day. It just makes me feel really alert and awake. It is a controlled substance, and can be habit forming if taken over time, which is why I like to vary my dose and take at least one day off per week to let my body do its thing naturally to prevent that. Hope this helps. It's Tax Time! Get tips, forms and advice on AOL Money Finance

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  • 3 months later...

So my rheumy prescribed me provigil and I finally had enough extra

money to get it filled. OMG...it really helps w/ the chronic fatigue.

It doesn't make me feel jittery, it hasn't effected my sleep what so

ever. Granted, I have only been on it for a few days...but I don't

feel like I need to take nap after I take a shower. Hopefully once I

get my first remaciade infusion, I will start to feel like a human

again.

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I love the Provigil. Trouble is insurance companies do not like to cover it

except for that which it is FDA approved for- I hope that will change in the

future. It is expensive stuff. I'm glad you got some.

Abby

In a message dated 8/11/2008 1:30:38 P.M. Pacific Daylight Time,

man_u8@... writes:

So my rheumy prescribed me provigil and I finally had enough extra

money to get it filled. OMG...it really helps w/ the chronic fatigue.

It doesn't make me feel jittery, it hasn't effected my sleep what so

ever. Granted, I have only been on it for a few days...but I don't

feel like I need to take nap after I take a shower. Hopefully once I

get my first remaciade infusion, I will start to feel like a human

again.

**************Looking for a car that's sporty, fun and fits in your budget?

Read reviews on AOL Autos.

(http://autos.aol.com/cars-BMW-128-2008/expert-review?ncid=aolaut00050000000017

)

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, I googled this and it says it is for excessive sleepiness. Could you

tell me how it helps RA patients? Is it for people who have trouble staying

awake? Cause I am the opposite I have trouble sleeping because of pain. Thanks

a

[ ] Re: Provigil

I had to pay for it out of pocket. (I went through an online

pharmacy). My rheumy loves it, and he prescribes it to his

patients. He was telling me that he gets nothing of positive

feedback from his patients on it. He is hoping that the manufacuer

will soon do a study prescribing provigil for it's off-label use for

RA/fibro patients.

It really does help.

>

> I love the Provigil. Trouble is insurance companies do not like to

cover it

> except for that which it is FDA approved for- I hope that will

change in the

> future. It is expensive stuff. I'm glad you got some.

> Abby

>

>

> In a message dated 8/11/2008 1:30:38 P.M. Pacific Daylight Time,

> man_u8@... writes:

>

> So my rheumy prescribed me provigil and I finally had enough extra

> money to get it filled. OMG...it really helps w/ the chronic

fatigue.

> It doesn't make me feel jittery, it hasn't effected my sleep what

so

> ever. Granted, I have only been on it for a few days...but I

don't

> feel like I need to take nap after I take a shower. Hopefully once

I

> get my first remaciade infusion, I will start to feel like a

human

> again.

>

>

>

>

> **************Looking for a car that's sporty, fun and fits in your

budget?

> Read reviews on AOL Autos.

> (http://autos.aol.com/cars-BMW-128-2008/expert-review?

ncid=aolaut00050000000017 )

>

>

>

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> >

> > I love the Provigil. Trouble is insurance companies do not like

to

> cover it

> > except for that which it is FDA approved for- I hope that will

> change in the

> > future. It is expensive stuff. I'm glad you got some.

> > Abby

> >

> >

> > In a message dated 8/11/2008 1:30:38 P.M. Pacific Daylight Time,

> > man_u8@ writes:

> >

> > So my rheumy prescribed me provigil and I finally had enough

extra

> > money to get it filled. OMG...it really helps w/ the chronic

> fatigue.

> > It doesn't make me feel jittery, it hasn't effected my sleep

what

> so

> > ever. Granted, I have only been on it for a few days...but I

> don't

> > feel like I need to take nap after I take a shower. Hopefully

once

> I

> > get my first remaciade infusion, I will start to feel like a

> human

> > again.

> >

> >

> >

> >

> > **************Looking for a car that's sporty, fun and fits in

your

> budget?

> > Read reviews on AOL Autos.

> > (http://autos.aol.com/cars-BMW-128-2008/expert-review?

> ncid=aolaut00050000000017 )

> >

> >

> >

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a,

I was prescribed provigil for the chornic fatigue that I have from my

RA/fibro. I too, have some trouble sleeping...but I don't feel like

I need to take a nap in the middle of the day when I started taking

provigil. So far, I take in the morning and I am still able to go to

sleep at night.

I would get frustrated because I would like to go out and enjoy life,

but taking a shower would take all the energy that I have. I feel

constantly whipped out. I am hoping this medication will help me not

feel so tired all the time. So far it is helping.

> >

> > I love the Provigil. Trouble is insurance companies do not like

to

> cover it

> > except for that which it is FDA approved for- I hope that will

> change in the

> > future. It is expensive stuff. I'm glad you got some.

> > Abby

> >

> >

> > In a message dated 8/11/2008 1:30:38 P.M. Pacific Daylight

Time,

> > man_u8@ writes:

> >

> > So my rheumy prescribed me provigil and I finally had enough

extra

> > money to get it filled. OMG...it really helps w/ the chronic

> fatigue.

> > It doesn't make me feel jittery, it hasn't effected my sleep

what

> so

> > ever. Granted, I have only been on it for a few days...but I

> don't

> > feel like I need to take nap after I take a shower. Hopefully

once

> I

> > get my first remaciade infusion, I will start to feel like a

> human

> > again.

> >

> >

> >

> >

> > **************Looking for a car that's sporty, fun and fits in

your

> budget?

> > Read reviews on AOL Autos.

> > (http://autos.aol.com/cars-BMW-128-2008/expert-review?

> ncid=aolaut00050000000017 )

> >

> >

> >

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Abby & Pat,

In order to get provigil from the manufactuer you need to have a

diagnosis in which it was designed for. Drug manufactuer's won't pay

for off-label use of a medication until it has been studied and

proven effective for that diagnosis. So far provigil is only

approved for certain sleep disorders...not for chronic fatigue.

>

> Unfortunately, Rx assistance will work only if you don't have

insurance or

> don't have an income or make under a certain amount (which is low).

>

> Abby

>

>

> In a message dated 8/11/2008 9:58:58 P.M. Pacific Daylight Time,

> bureau97504@... writes:

>

> have you tried getting the meds directlly from the drug company?

They

> usually have rx assistance programs to help those that cannot

afford to buy the

> medication.

>

>

>

>

> **************Looking for a car that's sporty, fun and fits in your

budget?

> Read reviews on AOL Autos.

> (http://autos.aol.com/cars-BMW-128-2008/expert-review?

ncid=aolaut00050000000017 )

>

>

>

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i don't think that is true as they do not know what you are prescribed the

medication for all they know is you have the prescription.  The mirapex I take

is for Parkinson's disease and I had to sign paperwork with my rheumy because he

prescribes it for fibro............and the drug companies gives it to

me............I really don't think it asks in the application what you are

taking it forl.  I may be wrong but this is what i remember.

 

Pat in Southern Oregon

Bureau Alvarez

From: <man_u8@...>

Subject: [ ] Re: Provigil

Date: Tuesday, August 12, 2008, 8:42 AM

Abby & Pat,

In order to get provigil from the manufactuer you need to have a

diagnosis in which it was designed for. Drug manufactuer' s won't pay

for off-label use of a medication until it has been studied and

proven effective for that diagnosis. So far provigil is only

approved for certain sleep disorders... not for chronic fatigue.

>

> Unfortunately, Rx assistance will work only if you don't have

insurance or

> don't have an income or make under a certain amount (which is low).

>

> Abby

>

>

> In a message dated 8/11/2008 9:58:58 P.M. Pacific Daylight Time,

> bureau97504@ ... writes:

>

> have you tried getting the meds directlly from the drug company?

They

> usually have rx assistance programs to help those that cannot

afford to buy the

> medication.

>

>

>

>

> ************ **Looking for a car that's sporty, fun and fits in your

budget?

> Read reviews on AOL Autos.

> (http://autos. aol.com/cars- BMW-128-2008/ expert-review?

ncid=aolaut00050000 000017 )

>

>

>

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Pat,

I don't have health insurance, so have to rely on the paperwork that

manfactuers have for people who can't afford their meds. I asked my

rheumy about it and I guess provigil won't approve it for off-label

use. When I was asking about it, I had to see a pulmonologist and get

a sleep study done. I jumped through the hoops and when I didn't

have a sleep disorder, the pulmonologist said he can't write me a

prescription for it and told me that I need to see a psychiartist and

excerise.

When I told my rheumy and I told him that I would be willing to pay

for it out-of-pocket, so he gave it to me. It works.

> >

> > Unfortunately, Rx assistance will work only if you don't have

> insurance or

> > don't have an income or make under a certain amount (which is

low).

> >

> > Abby

> >

> >

> > In a message dated 8/11/2008 9:58:58 P.M. Pacific Daylight Time,

> > bureau97504@ ... writes:

> >

> > have you tried getting the meds directlly from the drug company?

> They

> > usually have rx assistance programs to help those that cannot

> afford to buy the

> > medication.

> >

> >

> >

> >

> > ************ **Looking for a car that's sporty, fun and fits in

your

> budget?

> > Read reviews on AOL Autos.

> > (http://autos. aol.com/cars- BMW-128-2008/ expert-review?

> ncid=aolaut00050000 000017 )

> >

> >

> >

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  • 11 months later...
Guest guest

My rheumatologist as well as my internist were both happy to prescribe it

for me.

On Wed, Jul 15, 2009 at 2:42 AM, rich_lender <rich_lender@...> wrote:

>

>

> Who typically prescribes Provigil for fatigue? A neurologist? A general

> practitioner? A psychiatrist?

>

> Thanks, in advance, for any guidance.

>

>

>

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