Aboveallislove
Super Moderator
Augh. Well, the good thing is that with df508 it is an easy blood draw that the local lab can do and run in a few days. Thanks for the update.
Treatment for the mildly diseased
- Thread starter ethan508
- Start date
3 weeks later... my clinic's nurse coordinator just emailed to inform me that my insurance has given me a 6 month approval for Orkambi (but I'm only approved for 6 months). They ended up accepting my previous genetic test. I'm hoping that saves me $400 and a blood draw (my insurance wouldn't pay for another genetic test). I'm not sure if they will want me to get the genetic test done to get re-authorized in the spring. In doing the paperwork for it all, I learned my sweat chloride test from all those years ago was 104 mmol/L.
I've had a bit of a head cold lately (lots of sinus drainage) and been hoping it doesn't settle down into my lungs. With the other stories of Orkambi heck week (month) I'm hoping a cold on top of it all won't make the transition worse.
I've had a bit of a head cold lately (lots of sinus drainage) and been hoping it doesn't settle down into my lungs. With the other stories of Orkambi heck week (month) I'm hoping a cold on top of it all won't make the transition worse.
Day 1. Had a more productive cough today. I'm on the end of a cold so my cough has been more productive than general, but today I had far more production than I had the last 3-4 days. I had a co-worker ask me if I was going to die at one point during a bit of a coughing fit. I told him he'd be the first to know if I did (I don't typically cough enough at work to get questions). My production looked a little deeper in color than normal. Also had a moment that I was actually breathing through both nostrils (that is rare) due to some nasal cleanout. I'm tired tonight (not uncommon) and have a bit of a headache (again not uncommon). A little bit of tightness in chest, but no more than I've had with the cold.
Aboveallislove
Super Moderator
Ethan
thanks so much for the detail. Please if you can do keep it coming...it is so helpful to see the spectrum of things to expect and it does sound like you are getting some benefit already, but I'm sure it is hard to keep the hope in check and not read too much into things. Godspeed.
thanks so much for the detail. Please if you can do keep it coming...it is so helpful to see the spectrum of things to expect and it does sound like you are getting some benefit already, but I'm sure it is hard to keep the hope in check and not read too much into things. Godspeed.
Day 2. Less coughing than yesterday, but still high production with each cough. I could easily win any spitting contest if called upon. I'm feeling like I'm 'over' my cold. I'm pretty tired but just a little bit more than at the end of a long work week. Coached my kids soccer tonight, and dibbling around left me more winded than I'm used to.
I did notice that most of my coughing and production seems to happen 3-4 hours after taking my Orkambi dose. I'm taking the doses around the 6:30s of the day, which is the same time I do my vest and nebs. I can't decide if the 3 hour lag between Orkambi and coughing is due to the drug taking that long to kick in, or if that is when the bulk of the benefits of clearance and nebs have worn off. But it makes me think that if someone is really struggling on Orkambi, they could try to do their nebs/clearance a couple hours after taking the pills (which might be hard to do with a job). I'm trying that tonight (doing my nebs at 8:30 but took Orkambi at 5:30).
I did notice that most of my coughing and production seems to happen 3-4 hours after taking my Orkambi dose. I'm taking the doses around the 6:30s of the day, which is the same time I do my vest and nebs. I can't decide if the 3 hour lag between Orkambi and coughing is due to the drug taking that long to kick in, or if that is when the bulk of the benefits of clearance and nebs have worn off. But it makes me think that if someone is really struggling on Orkambi, they could try to do their nebs/clearance a couple hours after taking the pills (which might be hard to do with a job). I'm trying that tonight (doing my nebs at 8:30 but took Orkambi at 5:30).
Thanks for the updates. We really haven't noticed anything major with ds, whose been on it since the end of July; however, looking back, it did seem as if he had a bit of a head cold at first. He's gained some weight and he seems to breathe much easier thru his nose. Noticeable more when he sleeps as he's not mouth breathing or snoring, just regular normal breaths. And DH noted that when he laughs or is telling a story and talking really fast, he doesn't pause to gasp for breath or have that dry laugh-cough.
He takes his Orkambi at 7:20 and then again around 6:30 or 7 for supper. He vests at 6 am, 5 pm and 9 pm, so hopefully that last treatment of the night shakes out anything loose.
He takes his Orkambi at 7:20 and then again around 6:30 or 7 for supper. He vests at 6 am, 5 pm and 9 pm, so hopefully that last treatment of the night shakes out anything loose.
Day 4.5: Less coughing but production does seem a little less viscous than normal. I've been tired, but my life is generally tired so it is hard to tell. I've also been getting nosebleeds a couple times a day. Also I continue to have some mild shortness of breath and a little bit of chest tightness.
Day 9: I've noticed over last day or two that any of my coughing does seems to be more efficient in bringing up sputum. Late this afternoon, I did develop a focused but not overly intense pain just under my left pectoral, no idea what that would be or what would cause it. Hope it doesn't linger.
Tonight my kids' school had a 'jog-a-thon' fundraiser. So I jogged with my daughter at a nice slow pace (~13 min/mi) for 2.25 miles. Afterward I went out for another 2 miles at my normal pace (~ 9 min/mi). Everything seemed to be working the same as always. When done, my wife checked my temples for my normal salt crystal tidal lines. She claims I was less salty than usual post-run. I'm not convinced it was much different as I still had plenty of salt on my skin, and it was a cool night and half of the miles were done at easy pace. I did notice that I didn't have much of a post run hack or any wheezing or tightness. Just a few coughs with some good production. In the past coughing and tightness happened post run about half the time.
CF takes a lot out of you at times, but it can help you not look past many beautiful things as well. Tonight at my kids' activity, many parents sat on the side of the track and watched their kids jog, which is well and good. But for me I wanted the memory of jogging stride for stride with my little girl (she got to set the pace). It is a beautiful moment to me, a moment that might not be as important if I was healthy enough to take my lung health for granted. In typing this, I'm very aware of the struggles that many of my CF peers have. I feel for those that are trying Orkambi and having adverse reactions or have genes that don't work with a corrector drug yet. With all the research it feels like we are all on the precipice of many great things. But tonight I realized (yet again) that because of the advances of the past, we are also in the middle of many great things.
Tonight my kids' school had a 'jog-a-thon' fundraiser. So I jogged with my daughter at a nice slow pace (~13 min/mi) for 2.25 miles. Afterward I went out for another 2 miles at my normal pace (~ 9 min/mi). Everything seemed to be working the same as always. When done, my wife checked my temples for my normal salt crystal tidal lines. She claims I was less salty than usual post-run. I'm not convinced it was much different as I still had plenty of salt on my skin, and it was a cool night and half of the miles were done at easy pace. I did notice that I didn't have much of a post run hack or any wheezing or tightness. Just a few coughs with some good production. In the past coughing and tightness happened post run about half the time.
CF takes a lot out of you at times, but it can help you not look past many beautiful things as well. Tonight at my kids' activity, many parents sat on the side of the track and watched their kids jog, which is well and good. But for me I wanted the memory of jogging stride for stride with my little girl (she got to set the pace). It is a beautiful moment to me, a moment that might not be as important if I was healthy enough to take my lung health for granted. In typing this, I'm very aware of the struggles that many of my CF peers have. I feel for those that are trying Orkambi and having adverse reactions or have genes that don't work with a corrector drug yet. With all the research it feels like we are all on the precipice of many great things. But tonight I realized (yet again) that because of the advances of the past, we are also in the middle of many great things.
I fall into this category, diagnosed with CRMS, with R117H & delta-F508, and I just started taking Kalydeco 3 weeks ago. Non-classical CF-related metabolic syndrome is still a serious problem, albeit it may hit you later in life. I'm almost 42 and didn't start having real concerns until a few years ago, with a steady MAI/MAC infection and occasionally a few other bugs like Strep G. I tried to keep it mostly under control, but it seems that things were going downhill with the aging process. This past summer, a lot of my hair thinned out, my nails were getting brittle, and my periods became irregular, like I was starting perimenopause. Now, 3 weeks into taking Kalydeco, I feel like a new woman. Not only have I quit coughing up daily infected sputum, but my body feels like I'm getting my hormones back in balance. To be totally honest, I got some volume back in my face and in my bust line, and not on my belly; my curves are filling out exactly where I want them. I feel like a teenager again! My mood is up, and I'm thinking clearly, like I must have been living in a fog before; I'm having a great sense of awareness, energy and tranquility, like I'm more "me" than I've ever been. It's an amazing medicine.
The only issue that I've found with Kalydeco is that I have to be really careful about scheduling food and drink around it. Previously, I never drank that much alcohol, except for a couple of drinks socially, but I feel that I need to be even more careful with drinking. I did try a drink in the middle of the afternoon, a few hours before my dose of Kalydeco, and didn't find too much interaction. But when I tried 1 drink right after having Kalydeco with dinner, my face flushed red. Seems like an interaction to me. So, in the future, I won't have a drink within a couple hours of taking it, if at all. The label isn't clear about this interaction, as they might not have much evidence, but this is my advice from my personal experience. At least my husband doesn't drink at all, and I never drank that much, so it's going to be very easy for me to be good about not having any alcohol within a few hours of Kalydeco.
Otherwise, I feel so grateful that I'm taking this amazing medicine and don't have to worry too much about whether or not I'm ever going to meet my future grandchildren.
As for the insurance cost issue, that's the only negative I can say about this medicine. If it can cure your mild CF, like it seems to be curing mine, then it's worth it. Just because your CF is mild now, doesn't mean that it will stay mild when you get older. Also, your employer shouldn't have to pay higher premiums based on your care. The Affordable Healthcare Act changed a lot of things. If anything, you could do some activism on where you stand politically with specialty drug price gouging, standing on the side with a sustainable insurance system. But you should still take it if it can help you.
The only issue that I've found with Kalydeco is that I have to be really careful about scheduling food and drink around it. Previously, I never drank that much alcohol, except for a couple of drinks socially, but I feel that I need to be even more careful with drinking. I did try a drink in the middle of the afternoon, a few hours before my dose of Kalydeco, and didn't find too much interaction. But when I tried 1 drink right after having Kalydeco with dinner, my face flushed red. Seems like an interaction to me. So, in the future, I won't have a drink within a couple hours of taking it, if at all. The label isn't clear about this interaction, as they might not have much evidence, but this is my advice from my personal experience. At least my husband doesn't drink at all, and I never drank that much, so it's going to be very easy for me to be good about not having any alcohol within a few hours of Kalydeco.
Otherwise, I feel so grateful that I'm taking this amazing medicine and don't have to worry too much about whether or not I'm ever going to meet my future grandchildren.
As for the insurance cost issue, that's the only negative I can say about this medicine. If it can cure your mild CF, like it seems to be curing mine, then it's worth it. Just because your CF is mild now, doesn't mean that it will stay mild when you get older. Also, your employer shouldn't have to pay higher premiums based on your care. The Affordable Healthcare Act changed a lot of things. If anything, you could do some activism on where you stand politically with specialty drug price gouging, standing on the side with a sustainable insurance system. But you should still take it if it can help you.