Question about provigil.....

[tpsbmam]

has anyone here taken it for fatigue? What was your experience?

Background: I've been diagnosed with MS for 22 years. Fatigue has always been a primary issue for me, but despite that I managed to work a high-stress, long-hours full-time job for most of those 22 years. During those times I relied on amantadine + ritalin or amantadine + cylert to combat the fatigue, which was pretty overwhelming in the afternoon. (And both the ritalin & cylert only worked for about 3 months at a time before they lost their effectiveness). I kept pushing, though. I finally had to retire early due to the MS. I stopped taking all of that since I could now nap as needed -- it worked pretty well until a kick-ass exacerbation about a month and a half ago. Since then, I've had lots of new problems (e.g., going from walking with a cane to using a walker & scooter, once I get the new scooter.....have an old one that I had to use during the afternoon when working.....it died and I can't get it refurbished). But the fatigue now is insane and more overwhelming than ever-- I typically have to nap a couple of times per day, sometimes sleeping a total of 4 hours a day. And despite those I'm still ready for bed by about 8:30. Man, do I hate this part of it! I can deal with the legs, the walker, the new bladder/bowel problems, etc but the fatigue thing really impairs quality of life more than anything. (As I type, I'm ready to go back to bed having gotten up at about 7.)

Saw my neurologist a few days ago and he prescribed provigil starting at a low dose (100 mg). I've taken it for two days now and it's had zero effect. So my question is for other people who've taken it, has it taken time to kick in? Has it started to help you immediately? If it helped you immediately, what dosage were you on? Or what dosage were you on when it started working, if at all?

Note that I realize what people type is anecdotal and I would never base my decisions about meds (or other medical issues) on anecdotal reports, but experience of others can reallly help to edify.

TIA!

[Ian David]

1. I've been taking Provigil for years now.

Technically, it's a "sleep suppressant."

I take 200 mg in the morning, plus up to one more in the late afternoon if I need it- for example, when I'm spending all day driving.

If it's working, you should feel it within a couple hours at most, and I don't think it needs to build-up.

However, your doctor might be building you up slowly to a stronger dosage to see how you tolerate it.

Be very careful about mixing Provigil accidentally with other stimulants- especially ones you might now be aware of.

There was one time when I used a cup of coffee to take my Provigil, along with Sudafed... which was okay, until I also used Afrin (forgetting that Afrin is also a stimulant).

It didn't send me to the hospital, but it was an unpleasant feeling.

Don't expect the Provigil to make you feel the way Red Bull does, unless you accidentally mix it with other stimulants. Just expect it to make you feel less sleepy. To me, it doesn't feel like an energy-booster, so much as it keeps me from sleeping on the couch all day.

Oh, and it also makes my urine smell funny when I pee. I asked about that, and the doctor told me not to worry.

If it's not even doing that, talk to your doctor and let him know.

Again, this is my own, personal, anecdotal experience and is not medical advice.

[Warpy]

2. It's off label for MS, but seems appropriate

since it's approved for sleep disorders arising from shift work.

It's a milder stimulant than the others you've been on.

However, as you found with the others you've been on, they lose their effectiveness after a while. Your body adapts and you're faced with the choice of increasing the dose or taking a drug holiday.

Good luck. I wish I could get it for the profound fatigue associated with lupus and fibro.

[Mojorabbit]

3. I have MS too

and my neuro gave me some samples to try. It did nothing for me energy wise except give me a creepy feeling so I went off of it.
The one thing that worked was Cylert but they took it off the market years ago as it was destroying some people's livers and I sure wish they would come out with something else.

[tpsbmam]

4. Thanks, all! Very helpful info.....

I'll just keep up with it and call if it hasn't helped soon. I actually did start drinking coffee again -- I'd stopped as a number of changes I made to better control BP (plus meds). I started again recently as the fatigue was so overwhelming -- didn't help at all so I quit again. I don't take any stimulants at all (saline spray is as close as I go to Afrin). Good general advice for meds, though! Doc did say he was starting low and had some concerns about the effect on BP, but he knows I monitor that pretty carefully so trusts me to discontinue the med if it's affecting my BP too much -- it did a little but nothing that wasn't counteracted by upping my clonidine dosage (I have a wonderful primary who works with me in a true partnership -- I'm free to adjust my dosage within limits depending on my BP before taking it).

Didn't know they'd discontinued Cylert -- interesting. I sure as hell don't want to screw up my liver -- I'd rather take the damn naps! (Last time I took Cylert was about 1997). I have to be very careful about meds metabolized in the kidneys (e.g., ibuprofen is a no-no) because bladder retention went undiagnosed for too long (despite me complaining about symptoms and detection of it starting about 15 years ago) screwed up my kidneys (not to dialysis level but close enough that I have to be VERY careful). I checked when I came home -- provigil is metabolized in the liver (sorry doc, I always second-guess you guys and have a science background -- I've overruled them very wisely a couple of times, including one who could have freaking killed me had I taken the med he prescribed). There is some kidney involvement -- going to double check with my wonderful primary.

I, too, wish they'd come up with something more effective! This has always been one of the more disabling symptoms for me. I'd still be working full-time using a scooter if it weren't for the damn fatigue! (Well, and some cognitive symptoms that are also problematic.)