Last week I saw my doctor at the Cleveland Clinic for a check-up. He
noted that I have gained weight (5 lbs), and asked if my illness
(diagnosed with Sjogrens Syndrome, and may also have SLE) is still
affecting my job . When I told him I am not able to be active
(affecting my weight) and that I have to call in sick to work
frequently, he suggested that I try Provigil.
I read about it, and decided to give it a shot. Fortunately, my
insurance covers it, so it's a $20 copay instead of the $400+ it would
be per month if my insurance didn't cover it. I have been taking
Provigil for a week now, and I wanted to see if other people take it
and what their experiences are.
For me, I take 100 mg at my first alarm in the morning, and then I hit
snooze to go back to sleep. Within 15-20 minutes I am ready to get up
and feel peppy and just like I used to feel before I got sick with
Sjogren's. I take a 2nd 100mg tablet at lunch (my doctor suggested
this timing so that I don't tire out too early in the day, but that I
can still get to sleep at night). For the most part, this has worked
great. I feel like it's a huge miracle for me. For the first time in
ages I have had the energy to do laundry and actually fold and put
things away instead of leaving them in the dryer or a basket as I had
been due to my fatigue. I have been able to do more cleaning in my
house and just feel better in general throughout the day and feel a
lot more clear-headed.
I was worried that I would feel like i was "on something" or that I
would be "hopped up", but instead I just feel "normal", which is
something that I thought I had lost forever. I am 30 years old, and
have been operating with the engergy level of a 90 yr old for several
years now, so I am pretty excited.
Today was a little different. My body may be trying to fight off an
infection, but I woke up achy today and super-exhausted,--after taking
my 1st Provigil pill I had no change. I actually slept another 6
hours! I didn't know it would be possible to still be tired and sleep
after taking a drug used for Narcolepsy. I forced myself to get up
and take my Noon dose of Provigil and dragged myself into work (5
hours late, at this point), and even now I still feel awful. Could it
be that I'm coming down with something, or has my body just gotten
itself accustomed to the Provigil?
I'd appreciate anyone who has experience with Provigil. I have been
so excited the last several days at the prospect of having my life
back, and if Provigil is going to continue to work I would love to
continue taking it.
Thanks,
Chelle
janers - 21 Apr 2007 00:16 GMT
Hi Chelle sorry this is late. I have no experience with provigil but I would think since you are
aching and stuff, this might have the effect you are experiencing.
Maybe like life it will have it ups and downs and is just going to take while to get into your
system to work better for you.
I wish you luck for sure.
Please keep in touch, this would be interesting to me to find out more about this provigil
thanks
janers
KCat - 21 Apr 2007 04:10 GMT
> I'd appreciate anyone who has experience with Provigil. I have been
> so excited the last several days at the prospect of having my life
[quoted text clipped - 3 lines]
> Thanks,
> Chelle
I have no experience with the drug (but it sounds like I would like
to!) but I wouldn't jump to any conclusions. There are a number of
possibilities including fighting an infection. It could simply be
that you need to take a day off from the med now and then if that's
possible. Frankly, most of the rest we take, we need. Our bodies are
fighting a disease that needs all the resources we can get. So it may
just be that you're okay with the med for a few days at a time but
need to give yourself the right to sleep other days. I'd ask the doc
since I'm only throwing out guesses here.
I am tired of not being able to drag my *** out of bed until 10 a.m.
at best. I tried caffeine and gave myself a migraine. I'd love to
try this med but I just had my rheumy visit last month and glossed
over the fatigue thing. My pain level is very much under control so
it seemed silly to complain about sleeping in so much. I did say I
thought I wasn't sleeping well because I did sleep in every morning.
But I was embarrassed about the length of time I sleep in so I didn't
make a big deal about it.
Maybe next time. November, I think.
tokatoda@gmail.com - 21 Apr 2007 14:46 GMT
> > I'd appreciate anyone who has experience with Provigil. I have been
> > so excited the last several days at the prospect of having my life
[quoted text clipped - 24 lines]
>
> Maybe next time. November, I think.
After finding another person with SLE who takes provigil I found that
some days are still bad just like before taking the med...it's that
the SLE can make a person THAT tired. Crazy to know, but
interesting. I have been taking provigil about 10 days now, and with
the exception of that one day, it's been the most amazing thing for
me.
I don't think it's silly at all to complain about sleeping in so much.
I typically have no pain, and fatigue is my primary symptom to the
point that it really is debilitating. It has affected my job, which
in turn makes me worried about getting fired...and it has changed the
way I live. Not to mention I went from being a marathon runner to
being a girl who is about 30 pounds overweight for no reason other
than being too tired to move around any more than is required for
daily life.
I would say for sure to mention your fatigue to our doctor. It's such
a common symptom...I've been dealing with it for about 7 years, and
thought I would never get back to my old self, but provigil gets me
pretty darn close.
Anyway, good luck to you and thanks for your help!
Thanks,
Michelle
Shelagh - 21 Apr 2007 16:57 GMT
<snip>
"KCat" <kcattx@gmail.com> wrote in message
> I am tired of not being able to drag my *** out of bed until 10 a.m.
> at best. I'd love to
[quoted text clipped - 4 lines]
> But I was embarrassed about the length of time I sleep in so I didn't
> make a big deal about it.
</snip>
LOL KC, you and I are in the same boat; what does someone say when their pain is or can be under control with good meds and yet find themselves, like you sleeping until at minimum 9:30 to 10 AM every day!!
I wondered about not getting enough deep REM sleep, but I do feel OK over all... this week is the first one in months that I am actually feeling 'active lupus' with rashing and joint pains, and won't be surprised to see number changes on labs this time... but other than that and the 'fatigue' that I have never in my life had before, just so darn tired all the time.... I am 'fine'....
(other than heart and renal failures that are being monitored, tested, medicated and cooperating with maintaining their levels of failure.... both in the med-low zones on the charts)...
who knows, maybe the organ failures have me exhausted now (?) I am still taking the diuretic for both renal and cardio problems so they are 'ongoing' issues... I'd assume they 'could' exhaust me to this daily fatigue point (?)
I just want to stay in my nest on my piece of paradise and go nowhere .... contented and 'happy' doing that too ..... but 'tired' in a different way... but hey, glad to have to company lol!
hugs, ((KC))
Shelagh
http://clik.to/lupus
Nicole - 23 Apr 2007 16:49 GMT
I've been using Provigil for quite a while now.
I take 200mg twice a day.
But there are days when even 3 aren't enough... I've taken 400mgs at once in
the afternoon and fallen fast asleep. Some days, lupus wins.
Nicole

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> Last week I saw my doctor at the Cleveland Clinic for a check-up. He
> noted that I have gained weight (5 lbs), and asked if my illness
[quoted text clipped - 45 lines]
> Thanks,
> Chelle
ChelleSmiles - 24 Apr 2007 16:22 GMT
> I've been using Provigil for quite a while now.
> I take 200mg twice a day.
[quoted text clipped - 58 lines]
>
> - Show quoted text -
Thank you so much. 2 weeks now on Provigil, and it has been
positive. I guess the really bad fatigue days are sometimes too much
for even the provigil, but the rest of the time I have felt like I can
actually function like a "normal" person...not that I am normal :p
haha.
I'm finally getting all my laundry done at home and having energy to
do some light exercise.
I appreciate everyone's input. Thanks!
Michelle