Provigil

February 10, 2006

I started taking Provigil over Christmas time as well. I am also a

teacher. Yes, it is wonderful. I had samples and when I went to

fill a prescription, I found what you are describing, with doctors

saying how difficult it is to get. My family doctor said that " we'd

all like a little boost in the morning. " Ack. I'd have a cup of

coffee for that. My neurologist is trying and I have to go to the

pharmacy tomorrow to see if I have my prescription filled. I almost

felt like an addict, though, as I ran out of samples and had to push

through the day. Then when I saw more samples on the counter . . .

Phew.

I cut it in half and take 100mg in the morning and at noon. I'm

also working through the teacher's retirement to get disability, so

hopefully the drugs are temporary.

I didn't know it was possible to get this tired

I only take Provigil for work, not on the weekends. They make an

amazing difference. I think the hereditary neuropathy site had some info about

provigil, but you have to be a member. They do have two articles that I found

for you at http://www.hnf-cure.org/epublisher/publish/cat_index_4.php but again

you have to pay to see the whole thing, which I can't afford to do. Maybe it

could help you, though.

Take care. I find I'm having more trouble finished sentences and

remembering tasks short term since starting the Provigil, but it may

also be stress and A LOT going on.

Good luck,

Lenka

February 10, 2006

I've been on Provigil for almost four years now. Couldn't have worked this long

without it. I've always taken 200 mg a day but my neurologist just raised it to

300 mg a day. She says that it has been tested and proven safe in quantities up

to 1000 mg a day. She

also says that the dosage is different for different types of diseases.

One thing that I've been told by three different neurologists is that you should

take the full day's dosage at one time, first thing in the morning. It

supposedly works to regulate your sleep/wake cycle.

I'm concerned that if you're taking some in the morning and some around mid-day,

you may be messing with your sleep cycle.

It is not an 'upper' or an amphetamine. It isn't used for getting a 'little

boost'. It actually works on certain brain functions (don't ask me what ) to

regulate your body systems. It isn't addictive as in you won't have any

withdrawal symptoms if you stop

taking it but it is probably habit forming -- I wouldn't want to give it up.

It was originally used in Narcoleptics and Air Force pilots but you probably

know this. It did take a while (couple of months) to get used to it and it does

make me bounce in my head but you'll get past that part after a bit. I can

still take afternoon naps when I need to.

February 10, 2006

Lenka,

Few people know the stress of teaching -- always " on " for 7-8 hours a

day!

I also split the 200 mg pill and take it when I start to flag, usually

between 10:00 AM and 2:00 PM.

I found out that it really pays to shop around for a pharmacy. Look for the

Mom-and-Pop store that may belong to an association but isn't a chain. I found

the drug for $610.00 for 90 200 mg tabs which at my

current usage is 6 months.

I agree with you about taking the weekend off. Sometime we have to pay

the piper for the lack of fatigue.

I am also leaving school this year and seeking disability. It seems we

are following parallel courses!

Larry

February 10, 2006

The correct url is:

http://www.hnf-cure.org/members/articles/article_0068.php

Larry

February 10, 2006

I found 4 citations for using Provigil in MS, and a Harvard Medical

Bulletin. I am using them in my appeal for coverage. Sad to say, but

sometimes I wish for more CMT patients so we would have a greater

voice. But then I feel really nasty about myself and return to reality.

Larry

February 13, 2006

I wasn't able to get to the pharmacy this weekend, so I'm not sure

what the news will be about the Provigil. Those insurance companies

are sure hearing from me a lot lately, so maybe they'll try and

shore me up a little longer before they have to pay for some real

trouble, like a fall or injury (wishful thinking about insurance

companies thinking ahead, I think ) I'm keeping my fingers

crossed.

The doctor who turned me on to Provigil I could only see once

because she was out of network and my insurance doesn't like her

organization. She recommended splitting the pill and taking it a

few hours apart. I really do need something by lunchtime (I call it

my witching hour. Noon and everything goes exhausted.) I haven't

had too much problem getting to sleep at night (I worry, though,

which keeps me awake).

I haven't been able to research very much about long term effects.

I'm glad to hear that it isn't addictive. Hopefully the disability

will let me cut back. I know that days I don't take it, I crash

hard because I am overextending myself on those days with the

Provigil.

Larry, it does sound like we're in similar situations. What grade

do you teach? I have second grade. They are wonderful, but they

don't give me a moment of downtime. I am applying through STRS-

currently submitting oceans of paperwork.

Good luck with your disability application. It's so hard teaching

and trying to manage this disorder and get all the paperwork

submitted, faxed, etc. Crazy making!

Take care, Lenka

February 13, 2006

, thanks for the advice. I may try some just in the morning,

though I really sag at noon. I get that " zing " energy around and

hour after I take some but it fades after about 3-4 hours. Sleeping

at night hasn't been a challenge. I can even nap when I get a

chance. My fatigue is pretty huge. The Provigil is what gets me

through the day right now.

I'll have to investigate how it works. My family doctor was the one

calling it a " boost " though it sounds a lot more sophisticated than

that.

I wish they would do a study so we could have everything and

anything possible that could help us available to us. Interesting

how doctors have so many different perspectives.

Thanks again and take care, Lenka

January 27, 2008

My insurance company denied my prescription for Provigil because I do not

have multiple sclerosis or narcolepsy.

Abby

In a message dated 1/26/2008 7:22:38 P.M. Pacific Standard Time,

cmcpherson@... writes:

I asked for a prescription for Provigil last year after reading about it on

this group. My Rheumy had no problem writing the prescription but I had

problems filling it. My insurance denied it, said I needed a doctors review (I

have a max of $1500 annually) and I asked how much if I just paid for it. I

can't remember exactly, but it was more than $5 daily, that much I do remember,

because if it had been less I might have tried it. Apparently, that drug is

very expensive.

Colleen

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

April 26, 2008

Hi dear friends,

I went to see my rheumy yesterday and he put me back on the Enbrel and has added

Provigil to help with my fatigue.? He says that he needs to seperate the

diseases.? Currently, I do have severe anemia and every 2 weeks I receive??a

unit of iron.? To date, I have yet to bring my count up to normal and allow my

body to begin storing iron on

it's own part.? This has been going on already for several months.

Apparently, my Rheumy is also concerned that my body has not returned back to

normal from the previous 5 years (gee, (gee.....what do you think???????4

episodes of being on a? ventilator; 4 medically induced comas; 2 episodes of?

being declared legally dead and shocked back into cardiac rhythm; over 10

episodes of septic shoc, several skin grafts and finally a above right knee

amputation...............do ya think???????).?

Now my other question: I go my lab work back and my CRP cardiac is 3 times

normal level.? The doctor claims that it has been high was quite a while and

that? is? why he was checking it for me originally.? The quantative CRP was also

over double it's values.? Now fatigue is also part of cardiac problems.? On the

lab work, it states " CRP, cardiac 8.57, anything >3.00 is high risk of

cardiovascular event " .? Should?I be worried?? I called him about this, just for

clarification and (oh WOW.......didn't get a call back)!!!!!!!!.? Does anyone

else have this type of inflamation in addition to the other inflamation numbers

(sed rate, RA factors, etc)?

Maybe I am just being my same nuttyy self, but this is Debs!!!!!!!!!? Thank you

all for welcoming back.? I didn't realize how much I missed you fuys.? I feel

like I am " home "

again.? Just FYI:? I still have my cabana boys, however, they have to work much

harder these days, but ohhhhhhhhhhhhhhhh soooooooooooooooooo worth it! LOL

Gentle, tender angel hugs to all,

Debs in FL

Re: [ ] Provigil, no luck

HI NICOLE, IM SORRY YOU HAVE NOT BEEN WELL. I TO SUFFER FROM SEVERE

RA,OSTEO,NEUROPATHY & DEPRESSION.. I FEEL FATIGUE ALL THE TIME MY HUB SAYS TO

STOP BEING LAZY! MY DRS. WANTED ME TO SEE A PSYCH. AS WELL & I SAID NO. THEY PUT

ME ON LEXAPRO ALONG WITH MY XANAX & IM DOING SOO MUCH BETTER NOW. I HOPE YOU GET

THE HELP YOU NEED TO FEEL BETTER & THATS GREAT YOU GOT MEDICAID.. BEST WISHES &

GOOD LUCK,NICOLE.. GOD BLESS,MELYNDAGAMEZ 4/25/08 8:20P.M.CENTRAL TIME

[ ] Provigil, no luck

Hi all, hope everyone is well and flare free.? I have been trying to

get on provigil or a medication simular to it to help combat the

extreme fatigue that I have from my RA/fibro.? I did a sleep study and

I don't have sleep apnea or any sleep disorder.? The problem is that

provigil is being used " off label " for fatigue, and many insurances

won't cover off label use of medications.

I need to see a psychirist (I can't spell, sorry) to help w/ my

depression, PTSD (traumatic hospitalization) and bi-polar.? My rheumy

wants to see of they can better manage my meds to help me feel less

drained.? They said I am doing everything right to fight the

fatigue...but they are not comfortable messing around w/ the dosing of

my mental health medications. Grrrr.

The problem is that my discount health program doesn't cover pysch (I

would need $65 up front and then billed for $300).? I just got

approved for SSDI, so I can get on Medicaid...then I can see a psych

with no out of pocket cost. I am again playing the waiting game.? I

just hope they can help me.?

------------------------------------

April 26, 2008

Deb,

I've never had a CRP cardiac test done. My rheumy just does a plain old

CRP, and since I've been on Enbrel, it's been normal except one time it

was slightly elevated.

Anything to do with the heart would worry me, too. I'm sure your rheumy

will do something about it if needed. Have you tried calling him again?

I hope that everything is okay with your heart. You have been through

so much; it's time you got some relief. Let us know how it goes.

I'm glad that you've had your cabana boys; you've really needed them.

But I hope you don't mind that I borrowed some of them and took it to a

silly group I'm on. We have a virtual party every month, and it was a

big hit when I introduced the concept of cabana boys to them. Now

they're at all our parties, LOL.

I'm wishing the best for you. You'll be in my thoughts and prayers.

Sue

On Saturday, April 26, 2008, at 12:55 PM, BadKneesDebs@... wrote:

>

> Now my other question: I go my lab work back and my CRP cardiac is 3

> times normal level.? The doctor claims that it has been high was quite

> a while and that? is? why he was checking it for me originally.? The

> quantative CRP was also over double it's values.? Now fatigue is also

> part of cardiac problems.? On the lab work, it states " CRP, cardiac

> 8.57, anything >3.00 is high risk of cardiovascular event " .? Should?I

> be worried?? I called him about this, just for clarification and (oh

> WOW.......didn't get a call back)!!!!!!!!.? Does anyone else have this

> type of inflamation in addition to the other inflamation numbers (sed

> rate, RA factors, etc)?

April 27, 2008

Dear Sue,

?

Thanks for your reply.? We went for some dinner on Friday night with friends of

ours for over 25 years?which was the best medicine that any doctor could have

prescribed, however, it was still in the back of my mind and to date, I have

still not heard?from him?(the rhemy).? I sure hope that he has the common

courtesy to allay my fears asap.

Hope you have a peaceful and painfree weekend, you certaisly deserve it.

Gentle, tender, loving angel hugs.......

Deb in FL

Re: [ ] Provigil