What was your Inbrija experience?

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[Jockboy17]

Ineffective for me, minor relief w moderate to major side effects (foggy, headaches, stomach ache) plus the coughing at times unpleasant but comes with the territory

[Hidden]

Comment from my Facebook page:

“My dad has had Parkinson’s for 15 yrs now. He was only taking c/l until neuro added Inbrija-lavadopa inhaler. The tremors in hand got so bad he couldn’t eat, get dressed, shower, or brush teeth anymore. Walking barely with walker. Shuffling, stiff muscles, and losing balance. Once he started the inhaler/ 2 capsules as needed, motor skills improved. He gained his independence back. This is the only thing that stopped his tremors and improved motor skills.”

“Roy Propsner , he only needs one dose in afternoon and it will carry him rest of day. Along with c/l every four hours, it’s enough.”

[AmyLindy in reply to Hidden]

Sounds fabulous- I hope to see more that get results like this! Is it covered by most insurance plans, I wonder?

[Hidden in reply to AmyLindy]

Not results I’m experiencing

[AmyLindy in reply to Hidden]

Oh, I’m Sorry, Roy.

Let’s keep following...

[Kwinholt in reply to Hidden]

Roy, my dr prescribed it for me , I’ve tried it several times and it just made me feel like I was hung over and like my head was too heavy for my shoulders. He wants me to continue to give a shot but I haven’t after I’ve gotten the same effect every time. I’m excited to hear that it’s helped and improved some with their issues. Take care. Karen

[Phusson]

It helps when I use it before meds early morning. It was taking between 1/2 hour to 1hour for first dose to react and with Inbrijja about 15 minutes before, pills react much quicker. I don't have many off times after that as long as I take meds 4 times/day so just use inhaler 1 time

[Godiv]

Roy, I’m sorry you’re having problems with it. I started using it a month or month and a half ago maybe. I use it maybe once or twice a day and it is good for the off periods for me. It’s not the most pleasant thing to inhale of course. It really got me through a period of time in a couple days when I just had to be able to drive and do things. It was an emergency situation and the inhaler really did help. And there was no adjustment perid. So I wonder if it’s just not going to be the drug for you. People have also talked about another fast hit for dopamine type medication that is a sublingual product. Maybe that would be worth looking into? While I appreciate inbrijia, It’s not the most convenient product to use. You have to whip out the little inhaler, get two pills etc. etc. The process seems a little counterintuitive for folks like me with stiff hands.😟

[Hidden in reply to Godiv]

I'm still experimenting. Used it half a dozen times over two months. The reports/reviews are hard to believe. One inbrijia in the morning and No off times the whole day. I will dose again early evening and see what my tremors do all night.

Before insurance, the cost 2000$ is hard to swallow.

[Godiv in reply to Hidden]

It’s insanely expensive. I was actually kind of surprised my insurance paid for it without a fuss. Is it just not working for you at all? You don’t have to talk about it if you don’t want to. I just wondered if you had bad side effects or just doesn’t do anything for you. They have manufactured it in various dosages not too many but a few choices.

I’m sorry it’s not working. But gosh you’ve given it a good trial I think. I’ll be curious to hear what your doctor says.

If it’s not working, are you sure you’re cracking the capsule? Sorry stupid question but when I first started using it I wasn’t getting into the capsule. It says you don’t have to take deep breaths also but I’ve been having to. It’s just one of those things you simply have to take because it turns your nose hairs a horrible sooty color. Yike.

[AmyLindy in reply to Godiv]

A Reasonable cross examination- I am sure it helps ppl testing it out !

[Godiv in reply to AmyLindy]

Yes! Hey Amy, I was looking up the Laura Mischley PD school and saw that you had mentioned it. I just started it and really like it. She makes you feel so much better about things.

[Hidden in reply to Godiv]

Still looking for effect

[Godiv in reply to Hidden]

I’m sorry. Maybe you need a higher dosage. I feel the effects pretty quickly, usually in about 10 minutes. But it’s not an effect where you feel like you’re being beaten over the head. You’ll just kind of start to loosen up and things will get better. It lasts for maybe an hour, Or like someone said it’ll kind of set you up for the rest of the day. It does sound like your dosage is off; not sure but that might be it.

[Godiv in reply to Hidden]

Roy, stupid question: when you’re pulling it in are you holding it for a few seconds? And don’t forget it’s not working through the inhaler unless you hear that rattling sound as the capsule moves around. Sorry you probably know all this but just wanted to double check.

[Hidden in reply to Godiv]

Yes, holding it.It says it works for two hours after a wait 15 minutes.

Not much different to levodopa tablet.

How can people say after one dose works all day.

[Godiv in reply to Hidden]

I don’t know why it seems to last all day sometimes. I mean it’s on top of the regular medication, but maybe it doesn’t drain out of the system as fast as we think. Yes when it does last for the day or longer it’s very nice because you sort of almost forget to take the other stuff. That hasn’t been my experience every time though. Just a bonus once in a while. That’s all I can think of when I was talking about earlier is a different dosage for you.

Do you think your box of capsules is bad? I just can’t think of another reason that it would provide no reaction. I mean that would be other than too low of a dose. I wonder if it’s competing with some thing else?

[Godiv in reply to Hidden]

OK I see that it didn’t do anything for Enidah either. I wonder if it matters when you take it in the cycle of levodopa? Like if I was to take it right after I took levodopa would have any affect? But if I take it when I’m in the valley so to speak, it might have more effect. I have to experiment with it.

[Enidah]

Hi Roy, I can’t say it did much except make me cough quite a bit. Perhaps I didn’t get enough into my lungs and didn’t hold my breath long enough but I found it very difficult. Fortunately I got samples from my doctor so it didn’t cost me anything. I will try it again sometime and see If I have any more success.

[Jana86]

Let me say first I have no direct experience with this drug. My neuro prescribed it as I struggle with tremor and waning usefulness of L/C. After nine weeks of "communication" with my insurer, they announced they would not cover it all. So, $2,000 per refill or I could redo my coverage at open enrollment and perhaps find an insurer who would partially cover it. During that time, I also spoke with the company that manufactures it and they connected me to one of the researchers who assessed it as I tried to determine cost benefit. Because it is an alternative delivery system, not an alternative drug, the research consisted of a one year study of lung function....that is the capacity of the patient to fill their lungs with air...no change was detected. They have not collected any information beyond that. They do not track adverse effects. They do not collect info on who it helps, and who it doesn't help. In this COVID infested world and the reports of residual lung scarring, I chose not to fill the prescription...I will get my second vaccination on Saturday and will think it through again.

[Godiv in reply to Jana86]

Oh gosh that’s scary. It comes with the normal warnings but it’s disconcerting that they’re not following current information about it.

[Jana86 in reply to Godiv]

Given the amount of dust-like stuff you have to inhale into your lungs, I was concerned that they had no info on whether it causes irritation of lung tissue over the longer term.

[Godiv in reply to Jana86]

That’s a very good point. I was a little worried about it, but figured they had done some research. But it’s probably not even been out that long. Good to be a guinea pig NOT. 😟

[Hidden]

Express Scripts when asking will cover.I’m using inbrija. Testing.

Their literature described and I gather the only difference to levodopa tablet, the spray delivery gets levodopa working sooner. That is the only promise.

[Jana86 in reply to Hidden]

ExpressScripts is my insurer but I believe what they cover differs from state to state. I hope it is helpful for you....just not ready to make that choice right now.

[Bodiepipe in reply to Hidden]

It’s worth it to me.

[Bodiepipe]

Inbrija is a Godsend. I have been literally saved by it driving. It is to Parkinson’s as albuterol is to asthmatics. Now, if the manufacturers could just get their act together in communication with the insurance companies. I can’t seem to get more of it. I am coveting The sample packs my neurologist gave me. Please Cigna and Inbrija, Get your poop together and get me my medicine.