Well, long story short...I started Tobi earlier than planned. I missed the start of my Cayston cycle because I forgot to order it (like an idiot) and my insurance changed so that caused a slow down. So, I said let's just go with the Tobi now being that I was almost 2 weeks behind schedule.
So, once I got my insurance straight and used the pharmacy they wanted me to (they switched that on me too!), everything showed up on January 8th and I took my first treatment on January 9th. Thankfully my insurance is pretty good to me - my copay was $50. Tobi also offers a copay assistance program that can help get the cost even lower!
|Tobi Podhaler has arrived!|
|A box for each week, plus an extra Podhaler|
As my respiratory therapist explained, it would feel like flour/powder being thrown in your face on the first inhale. And he was right. All my medications (inhalers/nebulizers) are misty/wet when you breath them in, where the podhaler is dry. So yes, I coughed, but not too bad.
What's the process?
|The weekly box contains 7 packets of capsules and a podhaler|
|Daily dosage - white side is for morning, blue side for evening|
There are 4 capsules for each use. You insert the capsules (one at a time) into the podhaler and puncture the capsule but clicking the button. Then after expelling all the air from your lungs, you take a deep breath in and hold for a count of 5 before releasing. Take a few normal breaths, then do it again until the capsule is empty (each capsule has taken me 2-3 breaths). Then you repeat for the remaining capsules. Pretty easy!
It makes me cough just a bit, but not every time. Like when I use Cayston, I take a puff of my inhaler a few minutes before to help keep the airways from getting too aggravated. It's helped. I didn't use it once, and I felt like I coughed more during and afterwards too.
Overall, I'm very happy with trying out the Tobi Podhaler. I even told my hubby that I felt like I could breathe better and that my lungs felt more clear! Thats a pretty wild thing for me to say as I've always felt like I can breathe fine.
The goal is to space out the treatments as close to every 12 hours as possible and this works out pretty well for me. The minimum time that must separate treatments is 6 hours. Now that I'm comfortable with the medicine, I use it in the morning before I head to the gym (usually around 8am) and then in the evening (around 8pm) while I'm watching tv and contemplating my evening snack...hehe.
I'm still using my Hypertonic Saline while I vest in the afternoon. So it's still 3 treatment times in a day, but at least in the middle of the day I'm done after vesting!
Here's my comparison of Cayston vs Tobi Podhaler:
|Frequency||3 times a day, 28 days on/off||2 times a day, 28 days on/off|
|Spacing||At least 4 hour gap between treatments||Ideally 12 hours apart, no less than 6 hours|
|Usage||Mix the solution and put in a handset, then just breath until its gone. Requires power supply.||4 separate capsules that have to be switched into the podhaler. No power needed.|
|Breathing||Breathe normal||Fully exhale and then hold medicine for 5 counts before exhaling|
|Clean up||Handset has to be cleaned and disinfected after use.||Wipe mouthpiece with clean tissue and put it away|
Cayston - Nebulizing is easy! The downside is that the packaging can cut your fingers when you open it. And when traveling, there are more parts that you need to take and have to sanitize (and require power to operate).
Tobi Podhaler - Very little equipment needed! Downside is the powdery taste & dry feeling.
I think they both take close to the same amount of time to do the treatment. However the cleanup of the Podhaler is much faster and easier!
Side note: I traveled with my Podhaler last weekend. Typically with Cayston, I would keep it in my carry on bag to be sure it didn't get lost if my luggage went MIA. Never had any issues. With the Podhaler, I wasn't sure if I could take it through security because of the sharp part used to poke the capsule. I asked a lady at the airline and she recommending checking it (as I was checking a bag anyway) if I didn't need it during flight (that's what I did). So, anyone with knowledge on taking the Podhaler through security, I'd appreciate the feedback.
Tomorrow will conclude my first round of the Tobi Podhaler. I'm definitely going to use it again for my next 28 day cycle!! I'll start my next round the week before my next CF appointment, so I'll be interested to see how/if that impacts my PFTs.
I had said how I felt like I could breathe better, but my darn sinuses have been giving me issues the past week, so that's frustrating. Hopefully I can get rid of this funk soon. Thankfully, I feel great, just have some sinus congestion.