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Well Balanced Report
Joan
Monday, March 16, 2009 at 04:47 PMre: Well Balanced Report
momdukes
Monday, March 16, 2009 at 05:28 PMLisa, I need a Fatique over-haul. If I did not have fatique, I might could handle MS a little bit better. I take Provigil and have taken it from the start. At first it was half a pill twice a day. Once in the morning when my meet hit the floor, then around 11:15 a.m. Then I went two pills a day same time slots. The only things about Provigil is the more you take the less it works. With my Fatique in order to make it through the day, I have to have it. So my body apparently has adjusted to the drug, it works in the morning, but it really does not do a whole lot in the afternoon. I need something to help me all day, something stronger, I guess. I never experienced any side effects with progivil when it works, it works. In the morning it works, but it does nothing for me in the afternoon. So I try to do everything that I can in the morning, because I know that the afternoon is wrap.
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Great article, Lisa.
steve
Monday, March 16, 2009 at 08:25 PMAfter a week-long back-and-forth with the insurance company, BR was approved for one 200mg Provigil/day, instead of the two the doctor requested. So he's taking one Adderall when he wakes, and one Provigil a couple hours later.
He's asleep on the couch right now, and has been for 3 hours.
Granted, the 350 mcg/hour Fentanyl patches he needs to kill the chronic pain he feels from his waist down is a lot for those two little pills to overcome.
I'm finding that he's less irritable since replacing one of his Adderall with Provigil. Happy and awake is so much better than bitter and awake.
re: Great article, Lisa.
Lisa Emrich
Monday, March 16, 2009 at 09:47 PMHey Steve,
So glad that insurance approved covering at least one pill per day. Very clever to combine the Adderall and Provigil. I had not heard of that approach before.
Cephalon used to deliver many more samples to doctors' offices but have pulled back since they will have a newer version of modafinil coming out called Nuvigil. When samples are no longer available, I'll have to find a different source. My insurance will only pay out $1500 each year for meds which certainly doesn't go very far.
I wish that BR didn't have so much pain to fight through, but it's great that he has someone who loves him so deeply and takes such good care of him. And you're so right - happy and awake is a very good thing.
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Provigil and Me
ajandkia
Wednesday, March 18, 2009 at 10:47 AMEnjoyed the article, Lisa. I understand that a few years before the patent expires, other drug companies have the right to create generics - but they will still be very expensive generics until the original patent expires a few years later. I've heard that the makers of Provigil are holding Nuvigil (which is already approved for the same conditions) away from the patenting process until the Provigil patent is close to expiration. Economically, it makes sense and they get their patent longer. Nuvigil is just one isomer away from Provigil which entitles it to a separate patent (although it is THE isomer that makes Provigil work so well).
Provigil brought me out of an almost coma-like state of exhaustion, but I have to take it twice a day - first thing in the morning and then a little before noon. I don't have the insomnia problems. But I also have chronic obstructive sleep apnea and suspect I might have a touch of undiagnosed narcolepsy - all of which will be figured out finally in a soon to be had sleep study.
My main concern about Provigil (and eventually Nuvigil) won't be for me - I qualify. But I am concerned that the drug doesn't have the FDA approval for MS Related Fatigue, although from what I've heard from others using it, it is almost a miracle drug in allowing them to function (as it is to me). I wish the NMSS would get behind pushing the manufacturer to get FDA approval for prescribing it for MS Related Fatigue so that insurance companies cannot get away with denying it to so many who need it so much.
Great info - thanks.
re: Provigil and Me
Lisa Emrich
Thursday, March 19, 2009 at 06:05 PMThe topic of generic Provigil is an interesting one. In February 2008, the Federal Trade Commission sued Cephalon for unlawfully preventing generic versions of the drug to reach the market sooner. Cephalon paid $200 million to four drug manufacturers to settle their cases filed to enter the market. Anticompetitiveness!!!!
At least one trial with modafinil in multiple sclerosis showed no significant benefit in fatigue levels. This just shows that it is very important to know what it is you wish to measure and to find the best scale to measure that with. It was highly unlikely that Cephalon would support any further trials after this one, especially since neurologists were already prescribing Provigil for their MS patients. This is rather unfortunate.
I'm so glad that it works for you. I finally broke down and got my prescription bottle out again yesterday. I was falling asleep during piano lessons. Taking just half a pill has gotten me through the days. I still get as many samples as possible when at the neurologist's office, but they are getting to be fewer and fewer.
I hope that you're doing well. How's the Cytoxan infusions going? Would love to hear an update.
re: Provigil and Me
leahb
Monday, July 27, 2009 at 01:45 PMI am a six year survivor of Secondary Progressive MS. I am doing awsome due to my provigil. I had to have it prescribed for fatigue related to depression for my Blue Cross to cover it. This has been a miracle for me. I used to have to take three naps a day and was on disability. I had to withdraw from my Nursing Clinicals. This was frustraiting for me because I fought for six years to get to the point I was at. I was useing a cane and tons of pain medication as MS flared up my Rhumatoid Arthritis. I useing my injections now and Takeing Provigil. 400 mg. per day. I take Zoloft 200mg. per day. That is it and I am back to work. I am not haveing trouble with pain. I also watched a movie called the secret and have a 75% reduction of my lesions miraculously since I was not on any injections for over two years.

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Untitled Comment
Mandy Crest
Wednesday, March 18, 2009 at 05:13 PMI tried Provigil for awhile, but found the insomnia equally troubling. I currently have a mild fatigue which is managable without medication. I haven't had that overwhelming fatigue in awhile, but if it returns, I will definitely rethink it.
Very informative article, Lisa.
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Provigil
Carey Morgan
Thursday, March 19, 2009 at 05:37 PMProvigil has worked for me as well. I was diagnosed 2 years ago on November 1, 2007 with RRMS. The fatigue can be depressing but the Provigil does help keep my energy level and spirits up during the day.
Thank you for your thoughts on treating the symptoms of MS...it is a slippery slope.
re: Provigil
Lisa Emrich
Thursday, March 19, 2009 at 06:12 PMHi Carey,
It certainly is nice when a medication actually works for you, isn't it? I understand what you mean with trying to treat the symptoms. Sometimes treatment can cause other symptoms which can be treated with yet another treatment. Tricky spiral indeed.
I like to take only what is necessary to treat the original problem. With MS, so much of what we can do to improve our day-to-day life is based in symptomatic treatment.
Being able to stay awake and function somewhat normally is a blessing when fatigue has become overbearing. I'm glad to hear that you've found a suitable solution for your own situation. Also hear you about keeping energy and spirits up, very important!!
So how is your MS treating you? Congratulations on passing the one year mark. Very nice to meet you and welcome to Health Central.
re: re: Provigil
carey1967
Thursday, March 19, 2009 at 07:17 PMSo far, it is treating me well. No relapses that I can tell. Next week I go for my MRI that will include the brain and spine.
My husband was laid off from Microsoft in January after 15 years and out of the blue so our stress levels are higher than they have ever been. We will be just fine and he is actively looking for another job. It is difficult knowing the MS is there and could rear its head at any time...adds more stress. But it seems the Copaxone is doing its job and that is all I can ask for.
I'm glad I found your website...love your upbeat and positive attitude about dealing with MS as well as your very helpful info! Don't like those groups that continuously have pity parties.
Take care!
re: re: re: Provigil
Lisa Emrich
Sunday, March 22, 2009 at 10:30 AMCarey,
Sorry to hear that your husband was laid off. Good luck with the new job search. Stress is a tough one with MS, well with life in general. So glad that MS is treating you fair enough with no exacerbations. In fact, we've been having a discussion on Copaxone and other disease-modifying treatments in the comment section of this post.
Thanks for reading.
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Provigil
Maris B. Mohr
Tuesday, March 24, 2009 at 09:04 AMLisa,
Thanks for this article. It came just in time for me.
I received a recommendation for Provigil from an old friend who uses it as his only treatment for MS. He says his main problems are memory and fatigue that literally takes him totatally out of action. That's difficult for a professor. He's been taking it for years.
About 2 months ago my daughter read something in one of the health forums we have here in Israel. She said it not only helped MSers with fatigue, but also with memory and pain. I took her word for it and asked my neuro. He told me to give it a try as my main problems are the chronic pain everywhere and the fatigue it causes added to the MS fatigue that was there as well. I'm not sure if it's doing anything yet, but I'm going to give it another week.
How long should it take until I feel some effect from the Provigil? I've been taking for about 2 weeks. I finally figured out the best time which is around 9:30 after my morning swim. The swim both gives me relief and energy, but causes some serious physical fatigue.
Thanks for this great info.
Shalom - Peace,
Maris in Israel
re: Provigil
Lisa Emrich
Tuesday, March 24, 2009 at 10:49 AMHi Maris,
Finding the most effective timing and dosage for Provigil can take a bit of trial and error. I did find that taking half a pill earlier in the morning and the other half around Noon made a huge difference for me. Perhaps you could try this a see if it works better, worse, or the same for you.
Did your doctor indicate that you could increase the dosage at anytime? There was a time period during which I was taking 2 of the 200mg tablets each day.
It did seem that Provigil helped the brain fog a bit, which makes sense that it might help with memory in some cases. I hadn't thought of it helping with pain, but that would be great if it did. You will have to let us know if Provigil does help with your MS pain. I'd be interested to know.
It's very good to see you here and hope that you are doing well. Good job keeping up with the swimming.
Lisa
re: re: Provigil
Maris B. Mohr
Thursday, March 26, 2009 at 05:50 AMThanks Lisa,
My neuro gave me a Rx for 100 mg and told me to start with one a day. I've been taking it around 09:30 after my swim. I honestly don't know if it's doing anything. Maybe I'll try taking another around noon, like you say. I'll let you know if there's a change. In the meantime, I don't think it's doing anything for the pain.
Have a great day and feel good.
Peace & Serenity,
Maris

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It is rare to read a report about fatigue medication that provides both the benefits and the hazzards of these medications. That is an issue that I've been fussing about for years, especially with doctors who aren't up on the latest pharmacology reports.
My fatigue has hit the "extreme" level so I think it's time I had another talk with the neuro. I need to look at more holistic techniques since the meds are too harsh.
Thanks! Joan