I know that I have blogged about Inbrija in the past, but I have an update about my recent experience with using the Parkinson’s medication, and seeing that I have been talking so much about my excitement for this potentially life-altering drug, I knew it deserved an updated blog post.
What is Inbrija?
… and how the hell do you pronounce it? For the first month after its approval on December 18th, 2018 from the U.S. Food and Drug Association (FDA), I was calling it “Ambrosia”. No wonder why no one understood what I was talking about.
Me: “I’m super psyched about this new drug coming out called Ambrosia. It’s an inhaled Dopamine! Can you believe it? Totally bypasses your gut, so don’t have to worry about absorption issues”.
Them: “I don’t think that’s how you pronounce it”.
Me: “I’m pretty sure I’m correct”.
Them: “Isn’t Ambrosia that fruit salad made with miniature marshmallows?”
Me: “No… that’s not right… is it?”
After finally figuring out the correct pronunciation, I was ready to Guinea pig myself out and try a sample. I waited until I had a morning that my meds were just doing their own thing and was feeling “off”. Opened my starter box and loaded the first capsule in the inhaler and started my first inhalation. I get a mouthful of powder and immediately begin to cough. The correct dose is two, 42 mg. capsules, but I wasn’t going to do the second dose.
Inbrija helped my medication kick on, but the coughing was so disruptive, I spent the next few hours hacking away, but I wasn’t going to give up that quick… I mean, come on… this was the drug I’d been waiting for since it was still in trials, prior to their FDA approval. This was going to change everything for me and my sucky gut absorption. Then when the rep from Acorda (who manufactures Inbrija) came to the office, I had the
She states that one of the main side effects was coughing. But she assured me that if I breathed in slowly and had something to drink after I inhaled, it might be easier. But fun fact, I needed to take the 2 capsules because their studies showed that it wasn’t effective to only do 1 capsule.
Guinea pig trial take two… now that sounds utterly adorable. I was committed and hopeful the next time I was “off” and prepared to try it again. I got to the second capsule by breathing in very slowly and had my Starbucks iced tea within arm’s reach. Waited 10 minutes, which the website says that’s how long it will take to work. Then I started to yawn, which is a bizarre thing I do when my Levodopa starts to kick in.
The Inbrija was helpful, and it did get my Parkinson’s medication to work, but again, I couldn’t stop coughing the rest of the morning and profusely yawning. Which, by the way, isn’t very cool when you are a Psychotherapist, and during a patient’s therapy session, you’re continuously yawning. As if people didn’t have enough problems, I just topped it off with their therapist yawning during the lengthy, detailed story about the recent argument they had with their spouse.
**Update: The manufacturer is now recommending you take a sip of water before and after each breath. Do not take a deep breath from the inhaler, but instead take “baby sips of air,”… now, doesn’t that sound like a nail polish color? They also mention that you will get used to the sensation the more you use it.
What did we learn from this experience?
-First and foremost, this was my personal experience. You may not get the same results. We are all individuals with unique bodies, so don’t base your decision to try or not try this medication on my blog post.
-Inbrija is a Levodopa inhalation powder. When inhaled, it bypasses the gut, which can help Parkies that have absorption issues.
-Inbrija isn’t a replacement for your existing medication cocktail. It’s to be used in addition to, as a bridge between your doses of Carbidopa/Levodopa (Sinemet).
-You can use your Inbrija up to 5 times a day as needed.
-The inhaler and capsules are extremely light weight and portable.
Update
-I was having a bad night because of a delectable steak… thank you, protein. I had slowness of movement, rigidity, dystonia, and to complete my circle of hell, restless legs. My medications were failing, and I was having trouble just sitting still. Around 1 am, I remembered my Inbrija in the cabinet and thought I would give it a shot. Well, it worked, and get this in about 15 minutes!
-I’m choosing to continue Inbrija when I need to because, for me, it helped when I was in a pinch and needed my Sinemet to kick in. I believe it’s an excellent treatment option to add to your tool belt.
-If you have any questions or assistance with Inbrija, you can contact them directily at 1-888-887-3447.
-If you have Medicare and need help paying for your medications, contact them at 1-800-663-4227.
-Most importantly, Inbrija is not a fruit salad made with miniature marshmallows.
** For more information go to Inbrija’s website or watch Peter’s video below.
P.S. Ladies… Peter is single and knows his way around the kitchen!
I’d try anything for my off times that isn’t a shot!!! I have an appointment next week with my Movement Disorder Neurologist for a DBS programming appointment and I’m going to ask about this because so far my medication is unpredictable in being effective or it still causes Dyskinesias and my programming has not been going very well. I’m very frustrated with my situation and just want relief to get my life back!!! That’s why I had DBS surgery twice in the last 2 years….Bilateral to the STN target areas the first time, then a revision on the left side to move the lead to the GPI a year later in October….I had been struggling since the 1st surgery getting extremely stiff in every joint in my body, the medication was unpredictable, my speech became very slurred toward the 2nd half of the year, I developed stiffness in my entire right leg and was constantly dragging my right foot, and then some. When I 1st had the surgery I thought it was going ok….it just went downhill from there. So I had the 2nd surgery in October and immediately my speech was much better, I didn’t have the toe drag as regular or as bad anymore but….now for the past month I’ve been going downhill again!!! My speech is horrible again, the toe drag is back to being constant, I’m having regular Dyskinesias again, the Dystonia in my right foot and ankle is better but my toes are curling very bad, and then some…and to top it all off my balance is the WORST! I fall all the time, bump into things all the time…I just can’t win!!! So, coughing at 1st and learning how to use a medication to see if it gives me relief…bring it on!!!! I can’t say whether I regret even having the DBS surgery to begin with or not…I wasn’t good then and I’m still not good now. How can a person with all of my symptoms get any exercise that’s supposed to help??? I need something to actually work to get back to being me so I can do the things that are recommended to help! Any suggestions from anyone are welcome!!!
I was so excited when Inbrisa was approved. Like you. have have trouble using the inhaler. I inhale too much and get the powder all over. Then start coughing even after I drink water. Tried drinking a class of water before utinhaler. Still coughing. Tried using the inhaler after drinking my protien shake and had the same problem.. I also felt dizzy after using inbrrisa. . Not sure if Inbrisia was the cause of my dizzy spells. So, stopped using the Imbrisa, but after I watched video and reading comments, woud like to try it again. Have appointment with my Movement Specialist/ Neurologist Monday..
Ha! I yawn when my meds start to kick in, too. I had a chance to meet an Imbrujia rep at a PD talk, and I asked her if she’d ever seen “minority report” or if she was aware that it had predicted a powdered pill/inhalable drug over a decade earlier. She said no, she’d have to look into it. I doubt that. ..;)
Anyways, I’m glad it’s working for you! Thank you for sharing your story.
I’ve been using the imbrija for about two months now and I’m not coughing anymore I had to just take a drink first then inhale and then take a drink to follow I find that it helps not as effective as Apokyn but I don’t have to give myself a shot and that’s good enough for me my doctor said to just use one capsule and build up to tooth if needed that helped me my kids think I’m vaping and gives them all a good laugh
Bonnie,
Thank you for sharing your experience! No drug is perfect, but it’s nice to have options… and no needles!
My hubby tried it but coughed so much he coughed a lot if it out . Then , he lost the mental ability to breathe in … he kept blowing it out . He never thought it did much to start with so we just stopped using it . Great concept but not for him
Follow-up comment after reading everyone’s comments. It’s rather discouraging I didn’t hear of anyone from it worked! Is anyone out there tried the inhaler and it’s worked a bit? I was hoping for some relief!
I just got my “ambrosia.” I would like to use it as my neurologist recommends as a rescue dose up to twice a day. I am in my tenth year since diagnosis and haven’t had DBS. Could your having had DBS be factor in it not being as urgent as for someone like me who I’d off for extended times, especially at social events and when I’m at work (as a professor)? Anyway, I’m gonna give it the old college try!
Garrett, good luck with trying it! Keep us posted!
Well Smitty, I expected worse on your comments section. I’ll never admit I was wrong, because who’d believe you? It seems the people who read your blog are more…well I won’t go there, than the people who read my blog. I shared a Healthline article about healthy eating on my blog on FB or Twitter, wherever. Mind you, I didn’t write it, and I had people coming from all directions about my diet tips for eating pizza. My tip, eat the crust with just a little bit of the pizza on it. That’s how I like it. Anyhoo, I had no clue…I didn’t write the damn article so I said to eat it on a cauliflower crust. It’s healthier. 50% of the people put in their 2 cents on how I was wrong. Go to hell, whatever. 50% wanted more information about an article I didn’t write. I mentioned that Parkies on Keto would find it healthier to eat something unhealthy on a cauliflower crust. I remembered on a recent trip to Costco that frozen cauliflower crust pizza is bad though so I mentioned that frozen pizza is bad though. I don’t know what the hell I’m talking about. The only time I’m not eating bread is when I’m eating bread. Anyways that’s what I was thinking when I said you shouldn’t have written the article…how is Smitty going to turn this into cauliflower crust pizza? I’m not wrong though, just to be clear…definitely not wrong. Definitely want pizza now though.
John,
You had me at pizza and lost me at Cauliflower.
Well now that I’ve lost you, will you order me a pizza, a box of zebra cakes, and rent me Long Shot to watch. Tell the delivery guy to just shove it under my blanket on my couch. I tip well if it weirds him out.
Thanks for sharing. Is this something my neurologist can prescribe, or is it still in trials? Do you know if most insurance company’s will cover this med.?
Thanks for the info.
Linda,
No, it’s not in trials, it’s available now. Depends on your insurance if they’ll cover it. I know they have a patient assistance program, but I’m not sure about the details. I was using a sample. Which your Neurologist should have more info.
Allison, I have parked my test kit of Inbrisa for the reasons you have stated. I sometimes end up in a coughing episode and frankly have never experienced a faster release of dopamine.
And, i do not want to be haul another device around all day.
Peter,
Just get a European side satchel… problem solved! 😉
I’m with you. I was so excited when it got approved. But even after I practiced not coughing, it didn’t work. Sucked in all that dust – both capsules each try – waited and: nothing. Besides, it costs a fortune.
Renee, thanks for sharing your experience.
Have you heard of Apokyn!?? It’s for your off times too.But it’s an injection . It’s a very very small needle, thinner then a single hair and very easy to do. You don’t have to find a vein. I have been using it since March of this year and it works for me. It has helped with all my symptoms to some degree. The company that it comes from sends a nurse to your home to explain everything and monitor your first dosage.With daily calls 1-2 weeks and monthly after that. They contact you to refill and schedule delivery. I feel it is worth it. It has made my quality of life better. Talk to your doctor, Google Apokyn and read about it.It has been approved in the US 2004. And used in the UK before that. The reason I mention it is because how much it has helped me and how well this company has been to work with. All the care and time they provide I’ve never seen or heard of before.
Beth,
I’ve tried it also… it’s a great option! Happy to hear it’s helping you. Thanks for sharing!
I love Apoyken! I just wanted to share. It has been very helpful, especially since my off times have gotten worse. A real lifesaver.
Thank you for the insight and dosing supports. I plan to share it with friends who say it just didn’t work. Hope you tried it more than once, as it’s so unique, and may take time to get used to it. The yawning is typical when an ON period of dopamine is realized, FYI.
Annie,
I knew the yawning was part of it… just find it interesting how people react a person who yawns a lot. I always get, “are you tired?” Thanks for the comment!
Hmm, can’t atomize it so you’re inhaling a mist? Sounds like when you inhale cinnamon. Whew!
Dad, you’re so right! Just like the cinnamon challenge, but with dopamine.
Thankyou i always look forward to your input☺
Al, thank you!