Prescribed Provigil but insurance wont cover

[Prettymomma]

I have been prescribed Provigil for my fatigue and my insurance (state assistance) will not cover the cost. I asked the pharmacy how much it would be just to buy it and he said it cost 500.00 monthly. My question is if anyone knows of a prescription assistance program or an online pharmacy that I can get this medication for a cheaper price.

[genebulge]

I have suffered from very bad fatigue for at least the past 8 years but 6 years ago I was diagnosed with bladder cancer which was unusual because normally it is transitional cell carcinoma that is found in the bladder but I not only had transitional cell but also small cell carcinoma which is the very aggressive and nasty type of cancer.  After the exploratory surgery and biopsy my urologist said my only hope for survival and the odds were not very good was first go through a extensive chemo treatment regimen and then he would have to remove the complete bladder plus lymph node as well as the prostate gland due to their close proximity to the tumor which was deeply embedded into the bladder wall.  So had all that done and noticed that my fatigue as well as some other things were getting worse and just figured it was from the heavy chemo treatments but it never went away and progressively got worse.  I went through a sleep study and have sleep apnea and put on a cpap machine to sleep with at night.  That didn't help the fatigue but did make sure I kept breathing while asleep.  So two years later I had a number of complaints about balance, fatigue and many more so was sent to a neurologist.  He said after some basic office testing that I was fine and the only thing was my gait was a bit off.  My doctor finally told me it was all in my head insinuating that I was making up all of my complaints and I was just fine.  I never went back to that doctor again.  I had been on Zoloft and Wellbutrin since feb of 2003 as I had deep depression as well as anxiety problems.  Over the years I had seen a number of shrinks and they tried to get in my head and see what my issues were.  I kept telling them that nothing or no one was bothering me so just gave up and stayed on the Zoloft and Wellbutrin and dealt with all of my other issues such as terrible fatigue.  My daughter was using a psychiatrist that she swore by and said for me to give him a try.  I told him that I had no issues with anyone or anything and he said that I had clinical depression from an unbalance in my brain.  He gave me  small dose 5 mg diazepam to take when the anxiety got real bad and a small dose of buspare to help me.  For my fatigue he prescribed Nuvigil and in fact gave me a mfg coupon so that my copay was only $5 each month.  That made all the difference in the world as my daytime sleepiness and fatigue really got better.  A couple of years later with a new primary physician which because the previous dr said I was nuts I didn't complain about anything and just kept check on all of my vitals and blood work as usual.  Then all of a sudden I noticed my hands started to shake with tremors so my next visit I told my doctor and showed her this new development.  She said to walk down the hall and back and she said that I needed a neurologist and I said ok as this clinic was affiliated with a different hospital system than the old neurologist and doctor.  I was in this new guys office and he did all sorts of test and said after about 20 minutes that he was positive that I had Parkinsons Disease but to be sure he wanted me to take a D A T scan as that was the only scan to pick up on the brain where PD is located.  The results came back that his diagnosis was correct and he started me on a slow gradual increase of Ropinirole for the tremors and rigidness.  When I had worked up to taking 2 tablets three times a day I noticed that I was swaying side to side like Ray Charles at the piano.  When I saw him next time he said oh you have Dyskinesia which for some is brought on by Ropinirole so he cut back my dose of that and started me on Amantadine which was developed originally for the flu I think it was but later on they found that it helped Dyskinesia and other than Deep brain surgery was the only drug that could help Dyskinesia.  In the mean time that neurologist moved over to the hospital and his replacement was a very nice middle aged Chinese woman who I found to be very up on PD.  I was getting a bit of the swaying motion back again so she upped me to two tablets of Amantadine a day and after a month or so I noticed that I had something like a rash but it was inside my skin and I looked like a road map with deep purple little lines going everywhere.  I went back to her and showed her and she said that we had to stop the Amantadine because I was allergic to it and those were the tiny blood vessels that were all purple.  She showed me on the computer what it was and it was exactly what I had all over other than my face.  She said that it could be very dangerous if I didn't stop taking Amantadine right now.  I should mention that several months prior to this I turned 65 and was no longer on my wifes very good work insurance because I had to go on Medicare and AARP which wanted to charge me $400 per month for Nuvigil which of course I couldn't afford so had gone back to bad fatigue and day time sleepiness and the Amantadine while I was on it did nothing for the fatigue I had so it is beneficial for some thing but does nothing for bad fatigue.  To any of you on Medicare you really get screwed when you reach a certain dollar amount on your prescriptions which is called the doughnut hole and the co pay goes sky high.  I reached that in 5 months and have had to stop taking my Spiriva for C O P D because the co pay went crazy and wont get it until next January for part of the year.  But I just wanted to make he point that Amantadine will not work live Nuvigil or Provigil and that many people can be allergic to it.  In all of my life that is the first time I have ever become allergic to anything.  So if people are taking it watch out that you don't get a reaction like I did.

[scorpio19th]

Provigil is approved for narcolepsy and idiopathic hyper-somnolence.  My neuro wrote a letter stating that I suffered from the latter.  It was covered for several years, then I switched to Nuvigil.  A few months later, my insurance stopped covering either one.  Since it hadn't been helping me very much, I just stopped taking it.

[twopack]

Have any of your docs considered the possibility that your depression might be related to a sleep disorder (or two)?  There are quite a few types and you can be sleep deprived even if you feel like you sleep soundly all night.  

I think I remember depression being linked to OSA (obstructive sleep apnea) but insufficient amounts of REM sleep would also seem a likely culprit.  In either case it’s possible some of the drugs used to treat depression could actually worsen a sleep disorder and send a person into a vicious spiral.

Of course I have no idea if this is might be contributing to your depression but wouldn’t it be great if something like CPAP would be as beneficial as a drug AND be cheaper in the final cost calculations?  Plus, if you end up having a sleep disorder that is responsive to Provigil (or Nuvigil) treatment, the drug would be prescribed by the sleep specialist who diagnoses and treats the condition.  I would think insurance would be more willing to fill a script for this expensive drug if it’s prescribed for an FDA approved indication - rather than what they would otherwise determine to be marginal off-label use.

In my experience sleep specialists are usually neurologists but some are also in the fields of allergy and pumonology or are ENTs.  At least one detailed sleep study is required to diagnose.  They are expensive but your insurance will likely cover at least part of the cost.  It isn’t an overnight process but it might be a decent option considering your present dilemma.  Heck, it could even offer the potential of treating the underlying cause of your depression rather than simply taking aim at symptoms.  That would be a huge plus in my mind.  

Hope this helps something.  Good luck and please come back and let us know whatever solution you find that works.

[sllowe]

Hi Micheal - thank you for acknowledging your question is not related to MS, but that you just want some thoughts regarding what to do about how to get the med when insurance won't cover it.

Honestly, I have no clue why insurance companies out of the seemingly clear blue stopped covering Provigil - it's helped so many people that I know. It's absurd to say the least - but I'll not go there. What I do know is that doctors have offered Nuvigil (sp?) in it's place. It's a supposed sister med to provigil (from what I remember of the convo w/my neuro).  Perhaps you can ask your doctor about that.

I hope some others come along and see your post. This is an old discussion that you found here - one I've not seen in awhile. Wishing you the absolute best with find the combo of meds that help you ;) - shell

[michaelR99]

I understand that this community isn't intended for discussions about my illness, but since you all seem familiar with Provigil, I thought that I would ask. I have a treatment resistant form of depression that has not responded to numerous traditional antidepressant medications, although I have tried many. I was finally referred to a top research university to consult with a doctor who specializes in treatment resistant depression (TRD - an appropriate acronym if ever there was one). He has done many clinical studies treating TRD with Provigil (as have other research hospitals) and it is one of the few medications that has helped me. The problem is that my insurance company refuses to cover the medication, which is $2400 out of pocket for the generic form. I just cannot afford to pay $29,000 a year for medication. I started by calling the pharmaceutical company to inquire about assistance, but they have canceled their Provigil assistance program and also told me that depression is one of the few illnesses for which they do not provide assistance anyway. I then looked into other assistance programs, but they require enrollees to be without insurance, and giving up my health insurance is just not practical. So I then considered drug discount cards and the best deal I could find was a 10% discount, a cost that is still too prohibitive. So I am left with the real possibility of either using what little savings I have to cover this medication, until my savings are exhausted, or to go without one of the only medications I've found that helps me. Has anyone found any other creative ways to cover the cost of this medication? I do not know what to do at this point.

[Lulu54]

Hi, Swik1ct, it looks like you might be new here or I missed saying hello, so let me start by giving you a welcome!

The use of provigil/modafinil for MS fatigue is in the process of being studied and documented as an approved use for this drug.  It might have already happened, but until the FDA says a drug is useful for a condition, a drug would be considered 'off label' use.  

In the case of Modafinil, which I do take, it is approved for people with sleep disorders, particularly people who forms of narcolepsy due to the hours they keep/work.  

It is a somewhat controlled substance and I have to get my rx renewed every 6 months by the doctor and not yearly like most of my drugs.  I had a sleep study done, which shows I have sleep apnea, and that is why my insurance approved it for me.

Other people here have various stories, but we have heard a lot of rejections for provigil and its sister nuvigil.

Your neuro might consider other drugs - I know that ADD drugs such as Ritalin are sometimes tried.  Good luck and welcome again, Laura

[swik1ct]

My insurance wont cover Provigal or the generic. I have MS my Neuro said this might happen. It did... I have never been on anything for fatigue but need it NOW. What is the problem insurance has with this drug???

[Lulu54]

Just a quick note - if you decide to order medicines online, make sure that you check out the pharmacy completely.  There are lots of scams on the internet willing to take your money and not send you pharmaceutical grade drugs in return.  You don't want to take something that is possibly harmful.

be smart,
Lulu

[Quixotic1]

My pharmacist told me to look to Canada and I found on online pharmacy that had decent prices.  It's still spendy, but later this year when I fall into the Medicare donut hole I will go to them.  I will give the site address by PM to anyone that asks.

Quix

[Deb61]

I have this problem every time my prescription runs out.  I call my doctor's office and explain to his nurses that I've been denied, and they get back with the insurance company and I'm approved for another 3 months.  The nurses that work for my doctor are terrific--if it wasn't for them, I'd be in a heap of trouble.

Sometimes it's just a matter of having the correct paperwork and the correct things checked.  Provigil is not an approved medicine for treating fatigue in MS; however, I am experiencing other problems besides fatigue and the nurse checked some of the other things on it (like depression, I think), and then it was approved.  

You have to jump through hoops sometimes--it's really pathetic what they make MS patients do to get what our doctors prescribe for us in good will.  

Best of luck,
Deb

[britinusa]

My insurance (Aetna) would cover Provigil (at high copay) but wouldnt cover Nuvigil for MS at all. I explained I had trialed both and the nuvigil worked better for me but they wouldnt budge !

Isabel

[JulesL5S1]

Ask for a prescription for Nuvigil instead.  Provigil is more expensive and I actually had more side effects with Provigil.  Nuvigil is the 2nd generation of Provigil and the manufacturer has lowered the price to get everyone "switched" before the patent on Provigil expires in 2011.  

For me, the difference between Nuvigil and Provigil was amazing.  Nuvigil gave me back my life.  Provigil let me leave the house but I had trouble functioning.  And since Provigil is "going away" it is tough to even get samples.  My insurance never approved Provigil but they have approved Nuvigil.  Cheers, Jules

[essdipity]

Another suggestion would be to try Amantadine, which is quite cheap and likely to be covered for you. It helps many MS patients.

ess