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    • #16921
      Dave
      Participant

      It’s for bad OFF periods. I saw an ad for This new drug and asked my Dr about it. It’s fairly new. Has anyone been using it?

    • #16933
      Jean Mellano
      Participant

      hi dave i have heard of it but do not experience bad off periods…. yet.  i image if it is new, it is probably very costly and medicare probably doesnt cover iet:-(

    • #16949
      Roseanne
      Participant

      The support group that I go to had a rep from Acorda the pharmaceutical company that makes INBRIJA come to our meeting to talk about the drug. It is an oral inhalation form of levodopa. It comes in a capsule that you put in the inhaler. Then you inhale it through your mouth. One of the ladies in the group uses it and she said its a powder and that it took her a couple of times before she got used to the feeling of the powder. But she said it was helping with off times for her. I’m not sure what the cost was but I will ask her when I see her and report back.

    • #16953
      Jean Mellano
      Participant

      Roseanne, thanks for your input.  it is good to hear you know of someone that had good results.

    • #16979
      Dave
      Participant

      Greetings again,

      I received my sample INBRIJA  package Saturday.  I used it twice Sunday and once this morning. First account, seems to make a difference;peppier and my legs don’t ache.

      Weird ingenious device. A capsule of powder is placed in a sleeve. you prick the capsule and inhale the powder. It is tricky to figure the amount of breathe to inhale. Too much you cough.

      Well so far, unless it is a rebound effect, seems like a good product. There are a bunch of warnings, so I’m being careful, but it is only 42mg of Levadopa per dose.

      I’ll be back. Watch this space.

      C

    • #16985
      Jean Mellano
      Participant

      dave, keep us posted…not sure if i am a fan of the powder inhale.  it doesnt take me much to go into a coughing fit LOL.

    • #16994
      Judy
      Participant

      My husband has been using Inbrija for months.  We have found that you can predict off periods ( just keep a diary).  Then take the Inbrija about 30 minutes before.  It is a gap medicine – bridge the gap between regular meds.  In my husband’s case he takes the Inbriha about an hour before his next dose of Rytary.  So three times per day – however you can take it 5x per day.  Helps with walking, ba ok an CD email, gait.

    • #17002
      Jean Mellano
      Participant

      judy, excellent that you and your husband have found a good plan that works…

    • #17029
      Mark
      Participant

      First, check with your pharmacy to see if Inbrija is available because it isn’t at any of the ones near me or at Optum RX where I get my regular, mail order meds.

      Second, check with your insurance to see if it is covered because it isn’t by my United Healthcare plan.

      Third, how do they come up with these drug names?

      Hope you have better luck than me,

       

      • This reply was modified 8 months ago by Mark.
    • #17031
      Jean Mellano
      Participant

      Mark, it seems most USA insurance companies do not cover the new drugs as they r very costly.  Sometimes if ur doctor files an exception to the company’s formulary, they may cover it  Call them and see if they would do that if your dr. Indicates medical necessity

    • #17032
      Dave
      Participant

      Keep asking your doc for for Samples.

    • #17039
      Jean Mellano
      Participant

      dave, good advice.. thnx

    • #17050
      Dave
      Participant

      Let me make 1 correction. This is an oral inhalant. One puts a capsule into a sleeve and puncture it with the cap.. Then breathe in. There is a fan inside.

      I’m finding it difficult to control coughing. you’ve got to relax the cough reflex and inhale slowly.  I must say though that the drug seems to work well and helps me get my legs moving in morning.

      I’ll be back

      C

    • #17056
      Jean Mellano
      Participant

      dave , i am glad it is working well for you.   it is a great triumph when we can find something that improves our quality of life.

    • #17075
      Barry Block
      Participant

      I’ve found a simple treatment for off periods. I eat a bag of fava beans. They are made by the good bean and cost about fifty cents per bag on Amazon. They also make tasty snacks and people have no idea why I am eating them.

    • #17081
      Jean Mellano
      Participant
    • #17145
      Dave
      Participant

      Hi All,

      I am finding this a good product, however this delivery system sucks (no pun intended. 20% the time I cough They say if you cough it up, use a new capsule. That’s great for them, but 1 1/2 hits seem to work fine.

      TaTa

       

    • #17149
      Jean Mellano
      Participant

      dave, i think the delivery system would turn me off too, although i may feel differently if i start experiencing a lot of off time.   first i need to have up time.  desperately seeking that…

    • #17184
      Carol Rothfeld
      Participant

      Yes, I tried it INBRIJA.  It is inhaled and not through the nose. I had a problem inhaling the powder and stopped. I am now using Apokyn which is injected subcutaneously, much like a diabetic injects insulin. I also take Tigan, an anti-nausea medication about two hours before the Apokyn. It has made a world of difference in the off times I experienced every morning through early afternoon.

       

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