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  1. #1

    Ampyra: off-label use

    Anyone using Ampyra off-label for TM?

    We have been using it since the release with good results(previously used compounded 4-AP)......but we are in danger of losing the prescribing dr. who is not a neuro.

    We wonder how common off-label use has become as we try to strategize how to find a new prescribing dr.

    Our neuro has dx TM and has not been willing to Rx Ampyra off-label. We do have an older dx of MS which we're thinking of embracing with a new neuro just to get the Ampyra...but dread all the pressure to take the MS disease modifying drugs....

    Anyone have any ideas??
    Last edited by sl1029; 12-26-2012 at 11:18 AM. Reason: Title changed...

  2. #2
    Super Moderator Sue Pendleton's Avatar
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    The way I understand it can be prescribed off-label but a neurologist has to be the prescriber. My physiatrist wrote one and the pharmacy called me back to let me know they would cover incomplete SCI but I need a neuro to prescribe. I'll report back when I get it.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  3. #3
    It can be prescribed off label by any doctor for a patient with any diagnosis. Our physiatrist prescribed it for my father, although his neurologist (for seizures) has written a refill prescription in the past as well. There is no legal restriction on prescribing the medication. You don't have to have MS to be allowed to use it. B

    Most people on this site who take it have SCI but NOT MS, so most people here are using it "off label". There are a couple people who have TM who take it.

    The difficulty is with your health insurance. Any health insurance can have restrictions on whether they cover a specific medication. Since Ampyra is relatively new, and also expensive, most insurance companies will have restrictions. Many will initially restrict coverage to people that have MS. HOWEVER, if you are persistent and go through the trouble of writing a first or second appeal, you may be able to show that you are an appropriate candidate (ie. similar pathology to MS so likely to have benefit, cite the papers/studies that show benefit, get doctors to write a letter .... or at least sign the one you write!), and that the medicine is "medically necessary" for you.

    So you need to call your health insurance, ask to speak to the highest person you can in the medication department, and ask what paperwork must be filled out to obtain Ampyra and who gets coverage. Often, they don't know the details, and the only way to know if you can get it is to try.

    People on this site have had neurologists, primary care doctors, physiatrists and even a urologist prescribe it.

  4. #4
    Quote Originally Posted by Sue Pendleton View Post
    The way I understand it can be prescribed off-label but a neurologist has to be the prescriber. My physiatrist wrote one and the pharmacy called me back to let me know they would cover incomplete SCI but I need a neuro to prescribe. I'll report back when I get it.
    *******
    Interesting...the process in place is confusing because there is one authorization form that goes to Accorda that asks the doc to certify the patient has MS....and our insurance company adds another pre-auth/certification form. Our prescribing doc is most definitely not a neuro...and been prescribing for us for years. Our ins co. has been paying(but we have an MS dx on record.

    Accorda has been really helpful in talking w the pharmacy/ins co/ and docs. You might try calling them....

  5. #5

    reply

    Hi, where are you? In Canada you can buy it for half what it costs in the U.S. I don't have MS, but a high-level incomplete sci and the only help with my spasticity came with 4AP which is the compound version of Ampyra. i think Ampyra would really help me if I could afford it. There are online Canadian pharmacies too, but getting drugs in mail or across border isn't a good idea. If you know someone in Canada let me know, okay? Thanks...

    Jan

  6. #6

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    Nebraska Medicaid turned down my request and appeal. Neurologist's nurse doesn't think showing reasons and benefits will do any good. Is it Nebraska or are other states more compassionate? Thanks...

  7. #7
    Senior Member lynnifer's Avatar
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    Sorry I missed this the first time.

    I have (had) TM and have been using it with success since June 2012.

    Paralyzed 27yrs then T11 flaccid and complete.

    Got my lower back muscles back enabling me to sit up straighter more often, transfers are better and stronger .. was hoping for more but I'm taking half the dose they were in trials for spinal cord injury.

    I was hoping it would work as TM affects the myelin sheath etc ..
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  8. #8
    Quote Originally Posted by FellowHawkeye View Post
    Hi, where are you? In Canada you can buy it for half what it costs in the U.S. I don't have MS, but a high-level incomplete sci and the only help with my spasticity came with 4AP which is the compound version of Ampyra. i think Ampyra would really help me if I could afford it. There are online Canadian pharmacies too, but getting drugs in mail or across border isn't a good idea. If you know someone in Canada let me know, okay? Thanks...

    Jan

    I would not listen to the Neurologist's nurse, and would certainly appeal. Don't know why she would say that, as I doubt she has any experience with this. But maybe Medicaid is tough ... I'm not familiar with it. You need to talk to the neurologist about whether they would be able to help - not the nurse. Never know until you try.

    But why not keep using 4-AP? The short acting form of 4-AP can still be purchased from compounding pharmacies. We used to get it from Chancy pharmacy in Hahira, Georgia by mail.

  9. #9
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by hlh View Post
    I would not listen to the Neurologist's nurse, and would certainly appeal. Don't know why she would say that, as I doubt she has any experience with this. But maybe Medicaid is tough ... I'm not familiar with it. You need to talk to the neurologist about whether they would be able to help - not the nurse. Never know until you try.

    But why not keep using 4-AP? The short acting form of 4-AP can still be purchased from compounding pharmacies. We used to get it from Chancy pharmacy in Hahira, Georgia by mail.
    Mine wasn't insurance. I checked because my secondary and third insurers plus Medicare when I took it before all knew I was in the phase 2 trial and a physiatrist at Walter Reed had continued prescribing the compounded formula for several years after the trial. I only quit to find out what was causing severe abdominal pain. Titered down and off everything but Ditropan XL.

    Definitely appeal any denial by a state Medicaid or call the patient advocate person at Acorda.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  10. #10
    Hello,
    I have been reading up on clinical trials being held to get Ampyra approved for Stroke patients and gait improvement. The idea is for it to help with their mobility as it does in MS patients. My grandmother is a stroke patient so I was wondering if anyone had any feedback or info.
    Thanks!

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