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    Can anyone tell me what this means?

    My Dr prescribed modafinil (sp?) for fatigue and my insurance won't cover it, even with prior approval.
    So, after reading just about every post in the fatigue forum, I wrote down all the different meds everyone here has taken and sent my Dr an email asking her if she thought any of those would help with fatigue and being able to focus better.
    She sent me an email back today saying this : "I will need to determine the other medications available on the formulary. The other medications are not usually used in MS"
    And went on to say if I have a copy of the formulary, to give it to the nurse.
    I'm really new with ms. Just got diagnosed 10 months ago. I don't know what a formulary is lol.
    She did tell me at my last appt that she figured my insurance wouldn't approve the modonafil. I asked her if there was something else I could take and as she walked out the door, all she said was, nothing OTC would work for peuople with ms.
    I don't know what else to do, it's like she feels that the modonafil is the only
    medicine that helps anyone with ms.
    Can anyone tell me what she meant by the other medications on the formulary? And is she saying that all the other fatigue meds out there won't work with people with ms?
    Just not understanding her email I guess lol.
    Oh, that was all of the email. Just 2 sentences.

    #2
    Hi Bloodhound~

    I'm surprised that your Dr told you that nothing would help and OTC would work for people with MS. That is not true from what I've read here. Maybe it's time to shop for a different Dr.?? Is this your pcp or your neuro?

    How frustrating is that?

    The definition of formulary drugs- A drug formulary is a list of prescription drugs, both generic and brand name, that are preferred by your health plan. Your health plan may only pay for medications that are on this "preferred" list. Additionally, health plans will only pay for medications that have been approved for sale by the U.S. Food and Drug Administration (FDA).

    Read more here - http://healthinsurance.about.com/od/..._formulary.htm

    There are generic versions of Modinifil and hopefully someone who is on a generic version will come along and share their experiences. I don't take any of the drugs, but I've read here of others suggestions.

    Hope you can get this figured out and find something your insurance will cover!
    Take care
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      Hi Bloodhound,

      If your this information is coming from your Neurologist then I would agree with Seasha, you need a different Dr.

      The other medications are not usually used in MS
      There are very few symptom management medications that are FDA approved for MS. Many medications used for MS symptoms are used "off label." Provigil was FDA approved for Narcolepsy.

      Provigil, Nuvigil, A.D.D. medications (Ritalin, Adderall, ect), Amantadine (anti-viral) are all used to try and treat MS fatigue.
      http://www.mymsaa.org/about-ms/symptoms/fatigue/
      Diagnosed 1984
      “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

      Comment


        #4
        Seasha and snoopy,
        Thx for replying!!
        This is my neuro that told me this. She's not a ms specialist. Unfortunately, she's the only one left in my area.
        I'll check out the links y'all put on here. And thank u for explaining the formulary!! I had no clue what she was talking about. Guess I need to make some phone calls tomorrow to speed this up.
        I also saw where people on here were taking about taking prescription and OTC meds for fatigue and it worked for them. That's why I didn't understand my neuro saying that. When I emailed her asking about medicines, I told her I had talked to Caremark pharmacy, which is the pharmacy my insurance uses. And they gave me a list of meds that they would approve for fatigue. Which I emailed them to her. It's just stressful having to make several calls and having to figure out how to get the info for all this to her, guess I figured she would be able to know the formulary.

        Comment


          #5
          Communications with any Dr can be challenging at times. Hope all works out for your benefit and you get what is needed for battling fatigue!
          1st sx '89 Dx '99 w/RRMS - SP since 2010
          Administrator Message Boards/Moderator

          Comment


            #6
            Fatigue Meds

            Bloodhound said her Neuro said there are NO OTC drugs for fatigue. Perhaps Bloodhound you're looking for the names of those herbal supplements that have been mentioned before here at MS World. Unfirtunately, I don't remember the names but OThers here probably do.
            I think it's more to do with the cost of the drug with the insurance company. Provigil, Modafinil (generic Provigil) and Nuvugil are very expensive - about $2,000 a month.

            Comment


              #7
              Bloodhound,

              Were you able to get Provigil approved in 2015 for your fatigue?

              Please let us know, as might have some suggestions.

              Best Wishes!
              Alan

              Comment


                #8
                ME TOO

                I was also trying to get on Provigil and insurance denied the request even with neuro perscription.. I just use coffee in the morning !!!!

                Comment


                  #9
                  Insurance Appeal Letters

                  The National MS Society has templates for Appeal Letters.

                  If you are interested, go to www.nmss.org, and search for Appeal Letters.

                  I think you and your health care team will find this information helpful to write appeal letters to your insurance company.

                  Hope this helps!

                  Alan

                  Comment


                    #10
                    I'm also trying to get insurance authorization for Modinifil, and am hoping to get an answer sooner rather than later. The doctor sent it over to their "authorization dept" and I've been waiting for over a week. I keep calling them, leave a voice mail, and never hear anything back. The recording says that they will respond within 48 hours, but that obviously isn't true. I don't know what else I can do at this point, but I'd sure like to know what the answer is, so that at least I can try the appeal letter or move on to trying some other med if they won't cover this.

                    The really frustrating part is that the pharmacy offered me the option of buy a small number of pills just to try it, so I paid for three. They really helped, so now that I know there's something that can alleviate this problem, and I'd really like to move forward or else work on figuring something else out.

                    Does anyone know how long it usually takes to get authorization? I'm with Caremark.
                    PPMS
                    Dx 07/13

                    Comment


                      #11
                      Hi, I have been going through the same ordeal. I was on Modafinil for the last eighteen months and it has really helped. December 23rd I ordered refills for four of my meds, one was Modafinil. Caremark made an error with one of the other meds and cancelled the whole order. I didn't find out until after January 1st and in this new year, they have decided that they won't approve the Modafinil. Can't even get my last refill even though I ordered it before the new year.

                      So my doctor and I began the appeal ordeal. After two 10 page faxes and multiple phone calls, I heard a few days ago that I lost the appeal. Can't have it unless I pay an exorbitant out of pocket expense.

                      During the appeal process, my doctor had me do an at home sleep study since Caremark only covers Modafinil for sleep apnea, narcolepsy and one other sleep disorder all of which have to be documented by testing. Well, surprise surprise I actually have moderate sleep apnea so now I meet the criteria to get the med. good and bad news. We sent in the new appeal yesterday.

                      On my first appeal, Caremark did say that unless it's sent to a specific "urgent" fax it can take up to 15-60 days and they do not update you. You just wait. I called in a complaint about that since how do you even know they got the fax unless someone is willing to talk to you? I had to go through several people just to be told they didn't get the first fax so we resent it. Then 10 days later I was told they actually had received both but I had to wait for an answer, unknown how long it would be. A week later, I got a rejection letter.

                      No idea when I will get response to this latest appeal. They should just refill it since I meet criteria now but who knows? It's been really hard being off Modafinil. It did help me get through each day

                      I wish you luck in your appeal. Be persistent and consider doing sleep studies to see if you can meet the requirements to get it without appeal.

                      ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

                      Comment


                        #12
                        In some parts of the country, actually some insurance carriers, Provigil is routinely approved for ms fatigue. Other carriers say no.

                        This link from the National MS Society provides appeal letters for many drugs with the research to back up things up:
                        http://main.nationalmssociety.org/do...rs_toolkit.pdf

                        I think there is a section on appeal letters for Provigil on page 20 of the above .pdf.

                        Hope this helps!

                        Alan

                        Comment


                          #13
                          That's a great resource. However, it didn't work for me with Caremark. Part of my doctors ten page appeal was a copy of that document but they still denied it. Worth a try for sure.

                          Comment


                            #14
                            Look what I found:

                            Hey AridD, I just came across this: http://<br /> ttp://www.caremark.co...gilNuvigil.pdf

                            This document states that this med is appropriate for MS fatigue. Look under Off Label Uses and Summary. It's fairly recent, too--Oct 2015. It's on Caremark's own site, but I can't tell who actually published the document, and I don't know what "PA Program" means. It references the NIH, so it seems credible. Is FEP some agency, maybe? I couldn't find anything by Googling it.

                            All that being said, it's still not FDA approved for our purposes, but doctors Rx drugs for off label all the time, and at least this lends a bit more credibility.

                            A bit of advice: save this in case it goes away.
                            PPMS
                            Dx 07/13

                            Comment


                              #15
                              J-Bo, you are so kind to do that research to help me out. I really don't know what to say. So kind.

                              PA program is the prior authorization program. Those are meds that require special approval with specific criteria by Caremark. My doctor used everything she could get, including what you found, but Caremark said they still wouldn't approve off label use.

                              HOWEVER, my doctor's nurse called Caremark today and after being passed around to several people, she reached someone and told them about my new sleep apnea diagnosis which is on label use and I was approved to get it. I called later and, after a bit of difficulty, someone finally put the order in. Should get it in about a week.

                              I actually fell asleep multiple times during the day today and couldn't get through more than four hours of work. Came home and slept rest of day. Have been so worried about something happening to me driving, working, etc because of how tired I am all the time. Still waiting to start cpap but hopefully between Modafinil and cpap, things will be better and safer

                              I thank you for your support J-bo. And I encourage anyone with excessive fatigue to consider a sleep study. Don't know how much of a difference cpap will mean but I'm much more relieved that it allows me to get my Modafinil prescription. I've have felt so bad lately, legs much weaker, many more symptoms, and overwhelming fatigue, that anything that even helps a little will hopefully allow me to get through my day.

                              Thanks again for the support

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