I'm new here, my question is why drug companies are able to switch patients from a drug that works only because a new generic is available?

My health insurance no longer will cover the ONLY medication that helped me with fatigue and the ability to stay working in full time status. The Brand name Nuvigil I guess costs too much and now that Mylan has come up with a generic form it's the only one available to me. I'm back to square one 4 yrs ago after discovering this awesome medication that is time released so that I don't have huge ups and downs of fatigue throughout the day. I could keep going from 4 am till 8 or 10 pm without falling asleep watching TV or just sitting on the sofa after working a full day. Now I'm back to taking a nap during my lunch break (if I get one) and then come home so fatigued I am unable to even cook dinner. It's not the kind of like I was living anymore for the past 4 years and I really don't want to go back to that. So for the past 3 months I've not been taking anything because the generic brand did not have the same positive affects as the brand nuvigil. It made me jittery, on edge, emotional and sad, nauseous, headaches and had no effect on my fatigue. Why are the drug companies acting as if they are my doctor and can just erroneously change my medications prescribed by my physician and deny the pre-authorization he wrote for me to continue taking the brand name? This is "my life" not the drug company. It's one of the reasons I'm planning to retire because my job is so stressful and I am on multiple deadlines that I can no longer accomplish if I'm too tired to think. I've been struggling with this issue with my supervisors for almost 2 yrs now even though they know I have MS they don't care. They expect me to be able to perform the same way I have for years and I was able to until I became very ill in 2014 with unrelated issues with my stomach. After gallbladder surgery and then multiple EUD/ERCP follow up procedures I am unable to recover like someone without MS.

40 Replies

oldest β€’ newest
  • Hi KrittyKat60 Sorry your going through all this. It doesn't seem right that the insurance can make that decision IF it's overwritten by your Dr. But lm no expert lol

    I take generic for provigal. Have you tried that? Talk to your neurologist and your PCP about it again and see what they can do.

    You can also give MSAA a call and see if they can help or at least give you advice on the subject. ☺

    Call (800) 532-7667, extension 154

    Jes πŸŽ„

  • Hi, yes I tried Provigil b/4 Nuvigil was even available. I felt ADHD for like 5 hrs and then I would crash and have no energy. I've literally tried everything offered by my neurologist and none of them were as beneficial as the Nuvigil. I called the brand name company Teva that makes Nuvigil & was told I don't qualify for thier assistance program due to the income guideline. The only way I can get the Nuvigil is if I pay the full cost of $700 a month & it doesn't count toward my out of pocket deductible. I went through this same process about 5 yrs ago with the Aciphex I had been taking for GERD since 2000. When they came out with the generic it was not the same. I tried 4-5 other generics B/4 I found one that worked for me. I think that trial period in between is what caused all my stomach pain which supposedly was gallstones. After all those EUD/ERCP procedures it was determined that I produce really thick bile & it was continuously causing blockage of my bile duct. Now I take a pill to keep it thin and I haven't had another attack since July this year. I never needed to lose my gallbladder I was misdiagnosed for that particular illness. That was in May of 2014. After losing 65 lbs later they figured all that out. I have no more weight to lose so I'm maintaining my weight now for about 10 months now. I'll call MSAA on Monday to see if I can get some suggestions or if I qualify for some other type of assistance. 😑

    Thanks for the suggestion. πŸ‘

  • KrittyKat60 your so very welcome 😊 sounds like you have been through the wringer a time or two. 😞 I understand about provigal (modafnil) it just stops working after a few hrs. So my Dr uped my dose.

    Keep us updated on how you make out 😊

  • OMG 😲 yes that's exactly one of the effects I had as well with the generic Nuvigil (snd I can't remember what they called it) amodofinal I think it some thing like that. It barely made a difference and I was taking the 250 MG which I think is the largest dose available. It wasn't even 1/4 effective as the Nuvigil. I'll let you know what if anything is accomplished.

  • Well, I know medication are the pilar of treatment, but to help to build more energy or to keep going for the entire day I make fresh Herb Mate, more than one liter a day and keep drinking and bringing with me in a nice glass container for tea. Mate is for physical energy, mental focus, helps digestion a lot, including gallblader disorder,level of caffeine does not make pike, keep good balance all day, better mood and helps pee. Look online, I do not remember the original herbal name, I order my Mate tea from Argentina. Also in German it has a lot of good research about and good news helps to loose weight. I boil water 1.7L for 3 spoon.

    I am not changing the subject you are talking about Nuvigil, it is a suggestion for energy because only prescription medication for energy some times(most the time) is not enough, and could cause more side effects with higher dose.

    Mate tea is essential, vital for my complementary boost of natural full body energy.

  • Miriade

    Good info. Thanks I like tea and I too buy a lot of natural remedies online or look up recipes I think can help me. I hate medication even the ones that I know I need to take but if I can skip one I sure will try some alternatives. 😜

  • Sometimes the drug company will have patient assistance u can apply for and they will send u the drug for free.

    Because i am on Medicare, i did not qualify, but if u have commercial insurance - u cud give it a try. Just google the drug name and u will get their wensite

  • Thanks I tried that as well.

  • You should call your state's insurance company regulation division. They can guide you on what to do and how to do it. Usually they are response sible for ensuring that insurance companies do not deny customers what they are entitled to receive.

  • I did report it to my doctor but I have no idea what they did with that info. My insurance company has a wellness program where a nurse calls me every 2-4 months to check on me and I believe if I have an adverse reaction they report it to the FDA. I haven't received a return call back the last two months even though I've called and left a message several times to check in.

  • Where you need to call is part of the state government where you live. They have a department that regulates insurance. They can help you get what you need.

  • I've requested "brand necessary" on my prescription so they cannot sub with generic Nuvigil.

    Will have to pay more but why take an ineffective med. I've had this problem repeatedly with Mylan products. Time to contact the FDA. They are permitted to have 10% SD differences from branded med. but they are consistently sub standard. I would agree to try another generic manufacturer but Mylan is 😠

  • I totally agree about tge company Mylan. They should be shut down and put out of business. Every generic I've had to try has had an adverse effect on me in addition to not helping with the condition itvwas prescribed for. 😑 Makes me so frustrated.

  • Can you change the pharmacy where you get your prescription? As an example, CVS and Walgreens do not use same pharmaceutical company using the same prescription from your doctor. Also if you could use out of network better pharmacy you maybe could receive your order medication from better manufacture company.

  • I spoke with my mail away drug co (w/ my insurance) pharmacist and was able to get a different generic sub for Lidoderm patches. It wasn't quite as good as the brand but much better than the Mylan generic. I may try that today...and let them know Mylan πŸ‘Ž

  • OK @erash really stupid question. πŸ˜‘ How do you find out if they are made by Mylan or not? I just woke up, don't judge me πŸ˜…πŸ˜πŸ˜…

    Jes πŸŽ„

  • Jesmcd2 it should say on the bottle. I. e. Mfg. Mylan...or other pharmacy. Co.

    If not, the pharmacist should know.

  • Gotcha lol told you it was a stupid question lol😁 erash no one said l had to be awake when l was on here lol πŸ˜…

  • Jesmcd2 the only stupid questions are the ones not asked πŸ€“

  • Hi Miriade. 😒 Sorry but it's not the pharmacy where I fill my prescriptions. It's the pharmacy program under my health benefits. Navitus is the name of the company and their team that looks over the Prior Authorization's that are requested by the physicians deny them. I've called them at least 4 different times and they also informed me that my doctor has to Appeal the denial or I can. My last response to them was "I guess I should become my own doctor if I have to do everything myself. And it'll be denied anyway so why go through all that work on my own behalf? That's why I have a neurologist or Primary Care physician. We all pay a lot of $$ out of our pockets in addition to the monthly premiums every month." I'm sure she didn't care what I said but I felt better after. LOL

  • KrittyKat60 its not uncommon to have them request prior authorizations or appeals. We had a staff member hired to do just that and refills (family practice)

  • KrittyCat60, it's Fancy1959 welcoming you to this wonderful chat. I hate that you've been juggled around on your medication and what you're currently taking has so many negative side effects. It infuriates all of us when someone can play GOD with us, especially those suffering from such a complex multi-stage disease such as MS. I suspect the change to a generic has more to do with your insurance company that it does to the drug manufacturer. Check with your neurologist and get his input on the subject. No matter what medication you find yourself on you have to jump through hoops with the insurance company to get it. They love to reduce costs through generic alternatives.

    What I might suggest you do is contact the drug manufacturer through your neurologist. They often have contact numbers for the sales reps that they use for each drug manufacturing companies. Allow the neurologist to be the go-between. They usually have more pull since they might prescribe the drug you wish to be on frequently.

    There is also a number you can call, one associated with the National Multiple Sclerosis Society of America that will go over your rights as an employee working with MS. Their input might be very good for you right now and allow your employer to know you have checked into your rights under the American Disabiliy Act. Call the National MS Society at 1-800-Fight MS or (1-800-344-4867). Please stay in touch and let us know if you were able to get black on your non generic medication. And if the National Multiple Sclerosis Society of America was able to help you with advice and information for your Employer. It is always helpful to know what advice we give succeeded and what failed so that we can continue to work on fine-tuning our site. Take care of yourself and reply often that way you'll get to know us and we'll get to know you quicker. Please take away from all of this that together we are stronger. I look forward to hearing from you soon

  • Hi Fancy1959 - thank you for the info you provided. I'll have to print out your post so I can write it all down when I call. I had a frustrating day today. To day was my day to work at home. I received a new laptop last week, it just doesn't work the way it's supposed to. I think I shutdown and rebooted more in one day than I normally do in a month. Even the IT guys couldn't get it to work with the dual monitors. I'm wiped out now. When I go into the office tomorrow to work I'm making a call to my ADA Coordinator to see if she can light a fire under some chairs. They need to provide me with all the equipment needed to perform all my job duties and when you hand out new equipment make sure it works before I lug it home only to find out it's junk. This is the second try with this laptop in the last two weeks.😑😑 makes me want to cry. 😒😒

  • KrittyKat60, it's Fancy1959. I don't know about you but I find that whenever I get put into a stressful situation or something isn't working or you can't find something you just had wears my energy down very quickly. Stress also makes me more emotional and I get frustrated easier. And here I thought I was the only one that got affected by stupid little stresses or frustrations like this!

  • Fancy1959

    Those little things are more stressful to me than something really huge. IDKW but I've been that way all my life. Something happens like my kid falls and I rush him/her to the doctor for a head injury and I know exactly what to do, deal with it and move on. Those little stressors that happen to all of us throughout the day I definitely get frustrated. You are right it draws all my energy. By the time the day is finished I'm exhausted and collapse on the sofa for the night. I hate electronics when they don't work properly. Otherwise as long as they do what you want them to do they are great tools. I guess we all have that level of frustration. I used to be way more patient when I was younger. LOL

  • KrittyKat60 please submit your complaint to the FDA. I strongly believe there is a quality assurance issue with all Mylan generic products. It takes some time to do this but it's the way to voice our concerns and hopefully prevent the next Mylan generic problem.


  • erash

    Thanks. I'll try the link you sent. I was on there this weekend but then the grandkids came to spend the night with gramma and grampa. I never had a chance to go back and print out that online form.

  • KrittyKat60 you can complete it online (don't have to print it). It took me some time to rant but it does feel better to report it to the FDA.

    I also spent almost an hour on the phone with my mail in pharmacy re. The Nuvigil. . Interestingly they told me they no longer carry Mylan Lidoderm (I complained to them @ that 1 1/2 yrs ago) because of many complaints.

  • erash - I hope I can get that to happen for my case. I'm off work the week after Christmas and I'm hoping to dedicate one day just to take care of some of these calls and paperwork done so I can get it done. By the time I get home from work most of those places are closed and my phone calls never get done. πŸ’ͺStaying strong.

  • KrittyKat60 MS stole my brain (or at least part of it) and I stopped working at the end of October. I totally understand. If I were still working, i wouldn't have had the time or energy to do this.

  • erash Good morning. I'm home sick today. I was supposed to have my interview with the internal affairs investigator on this phone trumped up ordeal they are trying to make me look incompetent for the past 21 or 22 months now. God must be protecting me because I started to feel like crap yesterday afternoon so I was unable to go to work. By the time I got home from work my throat was so sore I could barely swallow. My body felt like I had the flu but I don't get fevers anymore so I can't tell how sick I really am most of the time. I had made some special tea and drank it as well as this home brew that I found online for my grandson. He had an annoying itch in his throat I think is related to an allergy. I boiled some flax seed and added 100% pure honey with no additives. Not only does it make it sweet it's a natural antibiotic (per what I read on this) and after giving him a couple doses for about 2 weeks his cough and that annoying sound of clearing his throat is completely gone now. I gave a bottle of it to my son to take home and told him on the evenings and weekends you have him be sure he drinks this. His mother would have dumped it down the drain. LOL but she's another story. Anyway once I get out of this bed today I'm going to look for my preauth letter from my neuro and start to make some calls. I want my Nuvigil back. Thanks for your support and awesome info you sent me. And to everyone else who responded to my question and concerns. Fancy1959 Miriade Jesmcd2 and all the others sorry I can't remember all the names. But all who responded offered a little something for me to try to get results and I'm going to do that. Have an awesome day. 😘 I'll be lying in my bed catching up on my shows I dvr'd over the last couple weeks.

  • KrittyKat60 honey does have antibiotic properties. Some use medical grade honey to heal wounds.

    P.S. Hope u feel better πŸ€•

  • erash

    Thank you. πŸ™

  • KrittyKat60 l hope you feel better soon! I mix honey and cinnamon and take a tsp of that, when l feel a cold coming on. There's alot to be said about honey.☺

    Good luck with your phone calls today✊ l don't blame you about the nuvigil, l would be lost without my modafinil πŸ˜•πŸ˜ πŸ˜…

    Let us know how you make out

    Jes πŸŽ„

  • Jesmcd2

    My hubby has all the natural remedies knowledge, I've learned a lot from him. Cinnamin, fresh ginger, garlic, certain fruits and vegetables etc. I make a lot of different tea and always put a stick of cinnamon and ginger root in it. Not only does it taste better it seriously does have a lot of other beneficial effects. If I ever get up out of bed today I'll get started on a lot of things. LOL

  • KrittyKat60 just feel better soon☺ Being sick for the Holidays isn't allowed. It's in the rules somewhere.. πŸ˜•πŸ˜…

    Jes πŸŽ„

  • Jesmcd2

    LOL IKR??? I've been on my sofa all day and even took a nap. I hate being sick. Well that was a dumb statement, who does?


  • KrittyKat60 hope you're feeling better today! 😁

  • Jesmcd2 - Nope. I'm still in bed. You know how it is with MS if you get sick it's a longer recovery. Thanks for checking in on me. ❀

  • Oh don't l know it! Ugh l wear a face mask of l have to go to the hospital for any reason. Everytime l went to visit my mom at rehab l would wear it. And still feel like cr*p ugh l felt bad, but finally had to stop going.

    Feel better soon KrittyKat60 ☺

You may also like...