how to get a new Altera handset

[shay]

Hey guys,
Our daughter is in need of a new Altera handset but we are not using it for Cayston and so don't get a new one with Cayston delivery. She is using it for her Colisitin. My question is how is the best way to get a new handset?? They are quite expensive and it is not covered under our pharmacy plan. Any advise?
Thanks!!!!!!
Shay

 

[triples15]

Hey guys,
Our daughter is in need of a new Altera handset but we are not using it for Cayston and so don't get a new one with Cayston delivery. She is using it for her Colisitin. My question is how is the best way to get a new handset?? They are quite expensive and it is not covered under our pharmacy plan. Any advise?
Thanks!!!!!!
Shay

Hi Shay,

I get a new one every month with my Cayston so i'm afraid I don't have any advise on where to buy them for out-of-pocket for a decent price.

I don't replace every month and keep a couple extra on hand. I'd be willing to drop one in the mail to you if that would help. It's of course still in original plastic packaging.

Let me know.

Autumn

 

[shay]

Hi Autumn,
That is incredibly generous! I am so touched. No, we will absolutely get our own, fortunately we can afford to if we have to. I was just looking for the best way to go about that. We used to have that stash on hand too from when she was on Cayston, but we have run through them. Thank you so much, Autumn. Just another example of how special this community is
Shay

 

[Hail2Pitt]

Where do you get your Cayston filled? I think your doctor can send them a prescription for a handset (or multiple handsets), and as long as you're willing to pay out of pocket, they'll send it to you.

I just started Cayston, and wanted an additional handset to make life easier. This is what my doctor did for me.

 

[Hail2Pitt]

The extra handset was $180, BTW.

 

[ToriMom]

Hi there!
May I ask--why did you start using the altera system for Colistin? Do you find that it is more effective this way? Does it clog up your device? Colistin is so sticky! We use Colistin also...but use the regular Pari to administer it. I would be interested in trying the Altera if you notice a difference in absorption. Do you use the screen that says "TRIO" or "Altera" on it?
Thanks so much,
Michelle

 

[shay]

Thanks Hail2Pitt. We can absolutely get the doc to call in an RX for the handset. The problem is the out of pocket cost every month and the Colistin is so sticky that I am afraid of not replacing it regularly.

Hi ToriMom,
We used to use just a Pari neb for the Colistin, but we found it was irritating my daughter's throat (inflammation, thrush, etc). She also has a disorder called Vocal Cord Disfunction (VCD), which is a whole other story, but really plays into this throat issue. Our doc thought we could try using the eflow to shorten the treatment time and hence the exposure of her throat to the medication. It seems to help somewhat.

We used to use the Trio aerosol head years ago for the Colistin but when we started this current process we had Altera handsets on hand from her days on Cayston. Our doc did not seem to think there was a significant difference and said we could just use the Altera for the Colistin.

Any thoughts or advice welcome!
Thanks!
Shay

 

[jricci]

I’m on Colistin every other month. I use the Pari nebulizer with it. I did try the E-flow with the Trio aerosol head a few years back, but switched back to the Pari. Although the e-flow was a lot quicker, it felt almost too quick for me. I didn’t feel like I was getting the same benefits compared to the longer treatment with the Pari. This might be because my lung function is on the lower side (35-40%) so I feel like my inhalations are not as efficient and I need more of them to get the correct dose. This is all speculation on my part. I do tend to overthink things and don’t like departing from a routine, so this also may have affected my perception of how the e-flow was working.
I use Foundation Care Pharmacy and I alternate Cayston with Colistin every other month. When I was on Colistin with E-flow, I remember them telling me that I could not use the Altera head that comes with Cayston with Colistin. I was told that I had to use the Trio aerosol head. I thought it had something to do with the heads delivering different size particles, but I’m not sure about this. If I remember right, the Trio head lasted 3 months. After rinsing with warm water, I would soak it in alcohol in between treatments, which helped keep it from getting clogged. I wasn’t on it long enough to have to replace the aerosol head, so I’m not sure about replacement costs.
I just looked it up on Foundation Care’s website and found this guide:

https://www.foundcare.com/wp-content/uploads/2016/08/fnc_device_chart.pdf

It says here that Foundation Care supplies the Trio head free of charge. I would call them to see if they can clarify some things for you. I’ve used this company for years and they’ve always been very helpful and responsive to phone calls.
Hope this helps!

 

[shay]

Thanks jricci! Yep, our daughter used to use the Pari as well, but we are trying the eflow because of the VCD and other throat issues (to shorten the exposure to the med). And we used to use the Trio for the Colistin years ago for the reasons you stated, which is why she did ask her doc if it was okay to use the Altera or did we need the Trio. Her doc did not seem to think it was a significant difference... I don't know... When we were on Colistin before and using the Trio, we did use Foundation Care. But our conundrum now is that we are forced by our insurance to use Briova specialty pharmacy for the colistin, but they do not carry the Altera (or Trio). So we have to get a new handset from Foundation Care but they charge us full price out of pocket since we aren't ordering the medication from them... It is quite a tangled web! AHHHHHHH!

And now her throat is so bad that she has been up much of the last few nights with an unproductive cough so perhaps we will be making a change to the antibiotic anyway... She can't tolerate Tobi, so maybe Cayston. But she always has trouble fitting in that middle dose.

Yikes!
Shay

 

[jricci]

Shay-
Sorry to hear she's having a difficult time. If you decide to stay with the Colistin you may want to contact CFF Compass. They can help with insurance issues. They may be able to talk to your specialty pharm. to get them to agree to cover Trio metal head every 3 months:
https://www.cff.org/Assistance-Serv...e-Plan/Find-Resources--CF-Foundation-Compass/

If you decide to give Cayston a try:
It took me awhile to get into a routine to fit in that afternoon dose. One thing that helps is that the doses only have to be 4 hours apart. So even if you missed your afternoon dose, you can usually still fit in all 3 doses as long as they are spaced 4 hours apart. Another helpful tip if you decide to have her start on Cayston, is to purchase 8 rechargeable AA batteries. These last so much longer than the regular batteries and when they do need to be recharged, I have another set ready. This helps to make it easily portable since the afternoon dose is more likely to be done when your not at home. Although it's stored in the refrigerator, it can be kept at room temperature for 28 days, so you don't have to worry about keeping it cool.
Here's a link for a free carrying case:
https://www.cayston.com/resource-center/nebulizer-carrying-case/
Somehow my insurance covered an entire extra Altera device so I just keep this case filled with everything I need for on the go. I'd call the company to see if your insurance would cover this. Because it increases compliance, some insurance companies agree to it.
I don't think your specialty pharm. would give you a hard time about paying for a new handset and metal head every month, since Cayston is only FDA approved using this device. (unlike Colistin).
If they do give you any problems, I'd call the Gilead directly and ask for their help getting it covered.

Good luck with whatever you decide and I hope she's feeling better soon