• Inbrija new medication

    Posted by julesbunny on May 5, 2023 at 7:57 am

    Hi everyone,
    If anyone has any information to share on taking Inbrija 33mg we would be interested to know as it is a medication being offered here in Europe but it’s very expensive.

    Side effects, good results or not, would love some feedback before we make a decision on going down this path.

    It’s a new Levadopa Inhalation Power in capsule form.

    Thanks JB

    steve-lloyd-davies replied 5 months ago 12 Members · 22 Replies
  • 22 Replies
  • Jorge

    Member
    May 9, 2023 at 9:10 pm

    My Inbrija is 42MG and I have used it for several years with no issues and good results. It is a complement to my Rytary dosage 5x/day.

    It is a short term OFF time avoidance tool going right from inhaled lung to brain (vs gut to brain). It takes 5-10 min to kick in and has no limitation for food consumption unlike Rytary etc.  If you need to eat and get out the door in AM you can start with Inbrija.

    Like anything else, individual results may vary.  I am a 10 year  Parky and occasionally find myself forgetting my pill schedule while working outside and Inbrija will keep me from fading while Rytary slowly kicks in.  Hope this helps.

    • julesbunny

      Member
      May 14, 2023 at 11:47 am

      Interesting Jorge, the higher dose 42mg and the mix with Rytary. We can’t use Rytary as it’s not available but good to hear the Inbrija works well for you. Thanks.

      • timothy-ross

        Member
        May 23, 2023 at 9:37 am

        It is not a higher dose, rather the 42mg presentation of Inbrija contains 33mg of Levodopa. A mite confusing.

      • julesbunny

        Member
        May 23, 2023 at 1:12 pm

        Thanks Timothy….. Didn’t realise that.

    • christine-p

      Member
      October 10, 2023 at 11:25 am

      Hello jetockeu,

      I had PD for almost 3 years and just recently asked my doctor to prescribe Inbrija to me as a rescue medicine for my off time. But the price of it was so high, I feel I can’t afford it. My Insurance categorize Inbrija as Tier 5 drug so I would have to pay $401 for 6 days supply. Is there any other way that I can lower my co-pay for this medication?

      Thanks for your help.

      Christine

      • steve-lloyd-davies

        Member
        November 15, 2023 at 11:48 am

        I tried calling the maker, Acorda Therapeutics, about whether they have programs to make Inbrija available free or at discount to patients who have trouble affording it, but I was unable to get through their phone tree and speak to someone or get a reply to a message I left.

        However, there is another resource that can help. Alliance Walgreens Pharmacy has a program to make Inbrija available at discount or even free, depending on your income. Their phone # is (412) 413-8162. I called them recently and confirmed they do have it available.

        Good luck!

        Steve

  • nanzee

    Member
    May 10, 2023 at 9:17 am

    I have the Inbrijia kit and tried using it a couple of times.  I have come to the conclusion that it might work well for folks that are used to smoking.  I have never smoked and the Inbrijia does not work for me because all it does is make me cough.

    • julesbunny

      Member
      May 14, 2023 at 11:45 am

      Thanks Nancy, interesting to read re the coughing. It’s something my husband was concerned about as well, inhaling powder into the lungs…

    • gail-dons

      Member
      October 12, 2023 at 3:03 pm

      There’s a learning curve in being able to take inbrijia. You have to find that “ just right” rate to inhale the medicating. Doing it right decreases/ eliminates coughing., <<

      • NotKaffke

        Member
        October 13, 2023 at 8:30 am

        Yes, that’s the ticket! I tried Inbrija but coughed *a lot* with every capsule and felt no benefit. An acquaintance told me in an online meeting, “You’re doing it wrong — if makes you cough, you’re sucking too hard. Don’t Bogart That Inhaler, My Friend!”

  • bakestein

    Member
    May 22, 2023 at 8:50 am

    I found it really didn’t have the effect I wanted. Also, it is really uncomfortable inhaling powder, making me cough quite alot following treatment. I no longer use it, it just didn’t seems worth it.

    • julesbunny

      Member
      May 23, 2023 at 1:12 pm

      We have pretty much decided against it because of price and the inhaling…

  • timothy-ross

    Member
    May 23, 2023 at 9:44 am

    Inbrija was recently approved for use here in Spain, but I do not know if it is available in the public health system. I do hope so: I have a terribly dysphoric down when each dose of Sinemet fades, an hour or more before it is time for the next one. I have a neurology appointment on June 9th and may be able to find out.

    • julesbunny

      Member
      May 23, 2023 at 1:15 pm

      It is available here in Spain yes, but from what we found out being on the Public health system, it’s not discounted so very expensive. Too expensive for us to bother with on top of the inhalation which my husband really doesn’t want to do. The Farmacia here wanted 1200 Euro for 60 tablets.

  • steve-lloyd-davies

    Member
    May 24, 2023 at 9:12 am

    I tried samples of this a couple of  years ago. The inhaled powder irritated my bronchial passages and caused intense coughing, which led to development of a bout of acute bronchitis which I could not clear without antibiotics. It may work for some patients, but did not work for me.

  • edward-gonzalez

    Member
    October 10, 2023 at 2:27 pm

    My wife used it for 2yrs but stopped when it wasn’t effective anymore. The only negative was since it’s a powder she would cough alot. But overall it was a great tool. The manufacturer only charged 20.00

    • christine-p

      Member
      November 7, 2023 at 12:40 pm

      Hi, I also stopped the Inbrija, I didn’t get the effeteness so I stopped using it. The 2nd reason is the price, they are ridicules expensive. Anyway, I give up on Inbrija.

  • christine-p

    Member
    October 10, 2023 at 7:40 pm

    I just started Inbrija a few weeks ago, I feel half and half because sometimes it works sometimes it doesn’t. But the price is high, $401 for 6 days supply. Edward mentioned manufacturer only charge $20, do you mind to elaborate more on how much your wife paid, does it go through your medical insurance? I would like to know because it is till a good tool to overcome the off time, so I will continue to use it.

    Thanks for your help.

    Christine Pierson

  • Saira

    Member
    October 13, 2023 at 9:09 am

    Hi, so I have had PD for 10 years, I tried inbrija and the first couple of times I thought I would need a tracheostomy since I went into laryngospasm!! I have tried it since and it just makes me cough like crazy, there’s powder flying all over the place, I just don’t feel it’s the best designed product. Maybe I haven’t mastered it , but not worth it for me.

  • steve-lloyd-davies

    Member
    October 18, 2023 at 5:10 pm

    I tried samples of it a couple of year ago and it induced severe coughing spells which progressed to a bout of bronchitis. I have never smoked and don’t have asthma or COPD, but for some reason am sensitive to it. It appears to work well for some Parkies. I was disappointed I couldn’t tolerate it.

  • bill-keller

    Member
    November 7, 2023 at 6:06 pm

    I have made Apokyn my go-to rescue medicine. For me it works great. It’s an injectable which puts some people off, but I have taken 1000s of shots over the years and it has never failed to flip me back to an “on” state with in 5 minutes of shooting up. I’m a 20 year parkies and Apokyn is a game changer. Over time I learned where the best spots were to stick the needle where I don’t feel it at all. Apokyn is a very clean med for me. I exhibit zero side affects.

  • Jorge

    Member
    November 7, 2023 at 9:13 pm

    Sorry, have not been online much in last few weeks to contribute on this topic. I still use Imbrija almost daily with little impact and am not a smoker. The alternative injectable Apopkyn seems to work well for those having problems inhaling

    I am a military retiree and have only a small copay.

    K

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