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    A bit of a rant / a bit of pure frustration.

    I have horrible fatigue and spasticity in my lower limbs. I take Baclofen 90 mg/day, Zanaflex 24 mg/day, and Valium 4 mg/day to help with the spasticity and some vertigo. (When I take these meds, I get even more tired.)

    Enter Provigil. After 3 attempts, CVS Caremark finally approved it for MS fatigue even though I carry the diagnoses of shift-work disorder and obstructive sleep apnea which are the main reasons for which it is prescribed. After a month, I am getting a nonstop headache. I stop the Provigil and it goes away. It was a crippling HA. I had to stop.

    Now, my neuro prescribed Ritalin bid in a tiny dose. Try to get it. Need prior auth. I know this is going to turn into the same circus the last med did. This time though, my out of town neuro has to send me the script by certified mail each month when I am down to my last 7 pills (if we ever get it authorized).

    Sometimes, I almost just think falling asleep at work would be understandable given these hoops I have to jump through.

    Anyone else have to go through all this just to get their medication?
    Sorry about the long-winded post.

    I started Ampyra about a month ago. Even though I had no response to a generic concoction said to be the same, it feels like 'the real stuff' is making a difference. My neurologist agreed and sent a new Rx to CVS Caremark on Monday. Today I received a letter that I have been cleared to get Ampyra for a month through Caremark Specialty Pharmacy. All I have to do is "fax this letter to the number below, along with your prescription." I don't have the prescription. The local pharmacy has the E-script and will not send it to the Specialty part of their company. They also won't give me the Rx.

    So tonight I messaged my neuro's office and asked them to fax it to the Specialty fax #. Then I faxed the permission letter to the Specialty # with a note that the RX would be coming from the doctor's office. I am crossing my fingers that someone there will care enough to put the two pieces of fax messages together and fill the prescription. Wonder what the odds are that it will happen, and I'll get the medicine before the expiration date on the letter doesn't snatch the whole thing away?

    And they tell us not to stress

    I hope you get your medicine, Sazed.



      I'm sorry you have such an ordeal for your Ampyra.

      I am am so frustrated, I had to see if anyone else dealt with the same issues. (I knew they did. I'm not the only one with this ridiculous insurance, but it's semi therapeutic just to hear it.)

      Take care and best of luck securing your medication.


        Still utterly frustrated

        My MS specialist tried Ritalin 3 times and gave up. Said they won't even try to get Adderall approved because my insurance is a nightmare and won't ultimately approve it. I am at my wit's end with this fatigue and they can offer no help.

        What to do...


          Most insurance companies won't cover any Rx for non-FDA approved uses. So off label use for MS fatigue falls in that category.

          I used to get a nasty headache from provigil if I didn't stay well hydrated with water and get enough sleep. But if I did those two things, OK. Probably not your cause, but just passing on if it helps anyone.

          So sorry you are going thru this. Working with fatigue is brutal.
          DX 01/06, currently on Tysabri


            Sleep is poor

            I keep well hydrated. I carry a water bottle with me as the combination of meds give me terrible dry mouth, so I'm always sipping on water.

            Sleep, though. Well...where to start. Diagnosed with a sleep disorder in 1995 (sleep hypopnea), but insurance wouldn't cover $200/month in-home O2 use - just the CPAP, so I slept without any device stubbornly until 2015 when I went back for a 2nd sleep study.

            Obstructive sleep apnea now - oxygen levels "only" desaturated to 85-90% while sleeping briefly before coming back up which is considered acceptable. Now, I sleep with a CPAP, no O2, and still sleep quite poorly. I awaken all day long from spasticity, bladder problems, and idk what else - but struggle to stay awake the rest of the day. It's very odd.

            Maybe the poor sleep is why Provigil is giving me the HA. Thanks for the reply. 😀