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MS fatigue and "stimulants"
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MS fatigue and "stimulants"

Hello everyone,
It's been a while since I've been on MH. I wish you all well.
Anyway, I was just wondering if I could ask you about prescription stimulants...provigil, ritalin, adderall (adderrall) and so on.
Do many of you take any of these for the debilitating MS fatigue? I would greatly appreciate your thoughts and/or experiences with these, or other types of similar meds.
Thanks so much! DA
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15 Comments Post a Comment
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620048_tn?1358021835
Good morning,

I jumped right on that one, i have the severe fatigue. I am also dizzy 24/7 and have been for 6 yrs.  I take provigil for the fatigue.  Its expensive but one of safer drugs, it is not narcotic either.  And it works for me, i was given adderall (adderrall) but it didnt seem to work at all for my fatigue.  Plus it is narcotic and addicting.

I was recently in a drug rehab recently to get off of methodone that my dr had given me for pain, a long story...they also took away my sleeping pill.  They were okay with provigil and they are very careful, we couldn't even have aspirin or coffee.

That is the way I would go if it were me.

hugs, meg

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Avatar_f_tn
I'm also on Provigil.  Currently my insurance company won't pay for it but I am getting enough "samples" from my doctor.

My doctor tried me on Vynasse (whatever the spelling - new one that starts with a V).  I had a horrible time using that.  I felt like a rabbit on speed.  I wanted to get up and start doing jumping-jacks but since my legs weren't working at that time that wasn't an option.  It took a lot of will-power not to just get up and try and run around.  Then it would end, then a bit later it would start again.  Horrible feeling for me.  (Others are fine on it so you really should try different medicines to see what works best for you.)

First we had tried Provigil but it caused significant heart palpitations.  So that is why we tried the Vy??? drug.  

So then it was off everything and I couldn't function and started the paperwork for disability.  So in conjuction with my doctor and with the pharmacy help line for Provigil it was determined that for me it would be ok to cut the 200mg pill into smaller pieces.  (Note - this is an option for me - don't try this without your doctors ok.)  We found that my heart could tolerate a 50mg dose.  (Provigil only comes in 100mg and 200 mg pills).  That worked good for about 9 months.  Now I am up to 75mg.  That is because the 50mg was no longer effective.

One thing that I and others have found on Provigil is that it can take up to 2 - 3 months for you to see consistent improvement.  It's not supposed to "build up" in your system but for whatever reason I was doubtful about the first month or two and then all of sudden I was a brand new person.  I'm working a part-time schedule now.  My co-workers have all commented on the amazing difference in me.

So I'm a Provigil success story but it has been rough.  And remember, my insurance won't cover it.  But when the choice comes to being an invalid in your home or being able to work and leave the house then you have to make hard choices.

Good luck, Jules
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398059_tn?1312888668
I am using Amantadine.  Works okay.  I do not know that much about it.  My understanding though is that it is cheap than Provagil,  but some say it did nothing for them.
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620048_tn?1358021835
Thats interesting Jules, I have always been on provigil and it helped from day one, its not as good now but I think I am just worse overall.  But its still the best.  

My insurance has always paid half of the cost But they are balking now so I dont know what will happen. I am on medicare now and it messed with everything.

hugs, meg
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784039_tn?1245594749
Hi,
I took Provigil for about eight months, sometimes 100 mg, sometimes 200 mg per day, depending on the day.  It worked great at the beginning but eventually stopped working.  So I went on Adderal for about six months and the same thing.  It worked at first but not so much as time went by.  I am back on Provigil and it is working again but not very good.  I keep cutting my hours down at work because of the fatigue but it is beginning to get the best of me.  What is the "Vy" drug because I know I will need something else soon.  And my insurance was paying for Provigil the first time but they won't pay for it now; same company-go figure.  But my doctor gave me about three months in samples and said the reps are not going to give out samples soon.  Sooo I will be looking for something else soon because I have to work 32 hours per week to keep my medical insurance.
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620048_tn?1358021835
You know, i was not thinking, but possibility provigil is not working as well..i just assumed I have had too much going on and was sicker. I dont want that to happen because I am afraid of the other drugs for fatigue.

Have you tried anything that works like it does?  Tried adderall (adderrall) and it was not as good.

hugs, meg
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Avatar_n_tn
I HAVE HAD MS FOR THE LAST 7 YEARS. I WOULD NEVER MAKE IT WITH OUT PROVIGIL. I JUST GET SO FATIGUE !  IT REALLY HELPS ME . TAKE CARE !
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867582_tn?1311630997
Hey DeniseApril - I was just going to open a post about this topic and then I found yours - great timing!!

I am not officially diagnosed, but have the debilitating symptoms of weakness and fatigue as daily companions (especially as the day goes on). I work 45 hours per week and some mornings I am virtually in tears trying to work at my computer because I am so totally wiped out and foggy.  Tried Amantadine, tried caffeine - but they were not adequate.  My vote goes for Provigil - it's the best darn little pill you can get for energy!!  I think I've already mentioned this to you, but will state my case again for the record.

I break my 200 mg Provigil pill in half (it's scored to do so) because 200 mg of Provigil makes me feel like I've just had about 20 cups of strong coffee - too strong. Also, I believe it is cheaper to buy 200 mg and break it in half than to just buy 100 mg pills.  So 100 mg is great - makes me feel like a normal person again with energy and full mental acuity.  Trouble is, like Jules L5S1, I get heart symptoms from Provigil - so I have to limit it to only once or twice a week.   Usually I get a sustaining day-after-Provigil-effect so even the day following Provigil I have slightly more energy than usual - enough to get by.  I do have to get more rest, though, later in the day on days when I take Provigil - or else I have really scary symptoms.  I nap longer and go to bed earlier on the day of a Provigil dose.  My feeling is, we have to pay back, with rest, the tremendous energy that we "borrow" with the Provigil dose.  In my opinion, it's definitely worth it, though, to feel normal again, to be able to be highly productive again, to be able to live our lives again as we used to (even if only for about 7-8 hours) and Provigil allows this - at least for me and for many others.  It is the #1 rated drug for energy for MSers (an MS doctor said this at an MS dinner and I have read it in drug surveys, as well).  Another benefit of Provigil is that it also has an antidepressant effect.  I believe I have read that it has been used in severely depressed individuals and is probably a lot safer than those so-called antidepressants that often end up leading depressed individuals to suicide.

Now I have a surprise for you people:  Provigil has a new sibling called Nuvigel!! That's right, the makers of Provigil are now marketing Nugivel which is similar to Provigil, but lasts longer.  A caveat:  It has not been tested and tracked as long as Provigil.

I will add more about Nuvigel, as well as an exciting new energy discovery I made just this week, in another post here because I am running out of room on this post.

More about this in less than a minute . . .

WAF
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867582_tn?1311630997
Hey DeniseApril and other MSers,

As promised, I'm back.  About Nuvigil (armodafinil) which is Provigil's new sibling:  Currently you can get a month's supply of Nuvigil to try for FREE!!   This offer is called the T.O.P. Start Program.  Just put Nuvigil and T.O.P. Start Program into your browser.  If you need more info, contact me for the website info.  However, you cannot have regularly been on Provigil within the last six months to qualify for this program.  They will ask you if you have tried Provigil and that's okay if you have.  However, when they ask you if you have used Provigil in the past six months, if you say "yes" then you will not qualify for this free program for Nuvigil. Your free month's supply of Nuvigil must be picked up by 09/30/09.  Again, please be careful because the full effects of Nuvigil are not known - it's still in the early stages of use.  My doctor told me its energy burst is supposed to last longer than Provigil's.  Because of my heart symptoms, I'm afraid to try it.

Now for my exciting energy discovery this week:  I have started drinking green tea with ginseng.  That really has helped me!!  Ginseng is something to try!!  I have read that MSers should avoid Asian ginseng, but that American ginseng is okay!!  Try green tea with ginseng - just an 8-ounce glassful really gives me an energy boost!!  And it's cheaper than Provigil by far!!  A university in Oregon was recently studying the effect of ginseng on MS fatigue.  Go to the following site to read about their study (which took place, I believe, last fall): http://clinicaltrials.gov/ct2/show/NCT00754832
As with Provigil, I do find I have to get more sleep after using ginseng to make up the energy deficit.

Here's to more energy!!

WAF
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867582_tn?1311630997
OK.  This is my last post here this morning about Nuvigil (armodafinil).

If interested, you can call:  800-281-2676 for more info.  The company that makes Nuvigil is Cephalon.  I think, as with Provigil, the drug is officially approved for individuals with:  Obstructive sleep apnea, narcolepsy, and shift work sleep disorder.  Of course, MSers, among others, have been using Provigil with great results even though they are not an officially approved group for its use.

WAF
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572651_tn?1333939396
This continues to be a hot topic - obviously the marketing for Nuvigil is working!!!!  it is made by the same company as Provigil - Cephalon.  here is what I wrote in a post about this on July 19 ----


"Provigil's patent does not expire until 2011 (?)  - there will be no generic on the market for Provigil until after this date. Cephalon mfgs. Provigil.

Nuvigil is the NU version of Provigil that Cephalon has developed that will be protected under patent law from generic versions until 2023.  They are doing their best to get Provigil users to switch to Nuvigil over the next few years, protecting their market share and their profits.

This is the same thing that was done with Ambien and countless other rx drugs.  A new pill, AmbienCR was developed and released and the patent clock was reset to zero.  The new sleep pill is really only a combination of two already existing drugs, but the mfg. promotes it as new and so much better for us.  As consumers we of course only want the best. :-)

It is unfortunately how our drug companies work.  They spend millions develping new drugs and expect to be handsomely rewarded by the profits forever by medical consumers becoming brand loyal to their drugs.

If you want to read more about this, go to google and type in nuvigil vs provigil. "


When Provigil's patent expires in two years, generics of this drug will hit the market.  The cost will definitely plunge.  There will be NO generic for Nuvigil until 2023.

By getting us to use Nuvigil now, and insisting to our doctors that this is what we want, Cephalon will be sure to have another 25 years of big $$$$$.  They are just protecting their market share.  The free month's supply offer is just another lure to hook us! We sure do love FREE even if it will cost us more later.

my best,
Lulu

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867582_tn?1311630997
Lulu, thank you so much for your post about Nuvigil.  I had missed your earlier post about it.  The first I had heard about Nuvigil was when I went to my sleep MD last week.  Sheesh!!  Those pharmaceutical companies are so slick!!  I'm pretty sure even my MD didn't know what was really going down!!  He told me the Nuvigil was their new product designed to last longer.

Incidentally, the info I mentioned about American ginseng and MS - the study done by a university in Oregon:  That study is over.  It was a three-year study.   I wonder what they concluded.  The study was done by the Oregon Health and Science University/ National Multiple Sclerosis Society.

A last word about Provigil:  Some of you have mentioned it doesn't work as well for you sometimes.  Insist on getting Provigil with a very distant expiration date - like a year or two off!!  I have noticed that as I get closer to the expiration date, the Provigil seems a little weaker.  Also, get it from a reputable pharmacy.  Actually, the strongest Provigil I ever had was from free doctor samples dropped off by the pharmaceutical rep.  That's the best stuff!!  Maybe they dose it up a little - make it a little stronger to hook you??

WAF
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572651_tn?1333939396
It may well be that the new Nuvigil works more effectively than the old Provigil, but I am full of skepticism  that this is not much more than being linked with corporate profits and shareholder returns.  

Be sure and let us know how it works for you.
Lulu
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333672_tn?1273796389
I agree with Lulu. Drug companies' motives are usually not terribly altruistic.

I posted here http://www.medhelp.org/posts/Multiple-Sclerosis/How-a-Drug-Maker-Tries-to-Outwit-Generics-/show/699399 about an article in the Wall Street Journal (which seems no longer to be available for free), which used Cephalon (the maker of Provigil) as an example of how drug companies strategize against generics. I summarized the article as follows:

1. Came up with a new, improved version that lasts longer

2. Raised the price on the current version

3. Is planning to release the new version at a much lower price thus

4. Forcing most people to switch to the new version in the couple years before the generic comes out

5. Therefore, when the generic comes out, most people will be on the new, patent-protected version and presumably prefer that

So the new version may be better, but what they really want is for people to switch to the new version so they won't want the generic when it comes out.

sho
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Avatar_n_tn
I have debilitating fatigue due to MS and have tried everything - Provigil, Amantadine, Adderall (adderrall), Ritalin - the works.  While Provigil helped for some time while I was still working, that was many years ago and its effectiveness eventually petered out.  At the time, I was taking a very large dose in accordance to doctor's orders, and my side effects (heart palpitations, increased rate of speech, crashing, etc.) were quite bothersome.  However, because it was the only thing that worked for me after trying other options, I determined that the side effects were worth it.  After a long hiatus, I recently tried Provigil again.  While it worked better than the others, the results were unpredictable at best.  So, when Nuvigil hit the market, I asked my doctor for a script, and he provided me with some samples.  I have been taking the medication now for two months and have been thrilled with the results.  Not only am I able to get out of bed, but now I can leave the house and enjoy much of the day with substantially less fatigue.  Plus, I haven't experienced any of the extreme side effects that plagued me while I was using Provigil.  I understand the situation at Cephalon re the patent; however, based on my personal experience, the two medications are not identical.  Nuvigil is hands down the better drug, at least for me.  And even though I've been informed otherwise by my neurologist, I am hoping that the Nuvigil doesn't become less effective over time, as the Provigil seems to do.  (To attempt to counter such an issue, I skip a pill at least once/week, which, btw, is what I had done with the Provigil, too.)  While I'm a realist, thinking of going back to the way life had been before Nuvigil is scary.

I would love to hear about others' experiences with Nuvigil and am especially curious if they have been similar to my own.  
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