saintoffeon
New member
I am so legitimately inspired by you scanboyd. Especially with that low of an FEV, how brave and patient you're being. It's exciting stuff!
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For people taking Orkambi
- Thread starter KellyAnneB
- Start date
Thanks Saint, just trying to inform folks about how I am taking Orkambi. Not that it is the correct way but it appears to be working for me. Just got back from gym. Interesting note at the end of my 6 mile ride, work load of 6, on recumbent bike for 30 min., after more than doubling resting HR of 60 my sats only dropped to 93. Resting sats was 97.
saintoffeon
New member
I'd rather see someone attempt self-made step therapy and have success than forego it entirely and not receive any benefits. Is it the FDA and manufacturer "correct" way? Perhaps not, but if it's correct for you, you're a responsible and informed adult who has had a lifetime of listening to their body.
I am able to get up to 98 following exertion, whereas I mostly floated around 95 for years. Neither are bad, by a longshot, but I just couldn't break back to 98 and I'm inching back up
Is workload 6 like sixth gear, where there's lots of resistance? Either way, six miles, wow! =P
I am able to get up to 98 following exertion, whereas I mostly floated around 95 for years. Neither are bad, by a longshot, but I just couldn't break back to 98 and I'm inching back up
Is workload 6 like sixth gear, where there's lots of resistance? Either way, six miles, wow! =P
Totally agree Saint, I hate some of the folks have dropped Orkambi because I "think" like you, it will be a big help for some them if they are able to weather the storm to get there.
The 6 is work load units, amount of resistance. I use to do the treadmill but the arthritis from a old football injury prevents that.
Good for you getting sat rate up to 98. Exercise is "VERY" important to all Cfers.
Take care and good luck!!
The 6 is work load units, amount of resistance. I use to do the treadmill but the arthritis from a old football injury prevents that.
Good for you getting sat rate up to 98. Exercise is "VERY" important to all Cfers.
Take care and good luck!!
Day 11
Had a good night sleep without O2. Took 3 Orkambi yesterday, this is 2 days on the 3 a day regiment. I had a little increase in SOB about 11/2 after taking the 2 last night. Resting sats this am was 97. I took 2 Orkambi at breakfast this am so I am now up to the full dose of Orkambi. No sweats or chest tightness all appears to be going well!
Had a good night sleep without O2. Took 3 Orkambi yesterday, this is 2 days on the 3 a day regiment. I had a little increase in SOB about 11/2 after taking the 2 last night. Resting sats this am was 97. I took 2 Orkambi at breakfast this am so I am now up to the full dose of Orkambi. No sweats or chest tightness all appears to be going well!
Day 15, with Okambi no problems with it except maybe a little wended when I lay flat in bed sleeping with my usual one thin pillow with no O2. Had my 1 1/2 hour work out at gym today with no issues. Six mile bike ride setting with work load of 6 might be a little easier? Wait and see. As a side note I can taste the salt in my mucous since I started Orkambi, never before tasted this. Have a great day!
S
stephen
Guest
Scanboyd,
Many people have had trouble tolerating Colistin and stopped using it, me included.
Many people have had trouble tolerating Colistin and stopped using it, me included.
I have taking Neb Colistin for several yrs. with out any issues until yesterday. I started Orkambi 23 days ago and have been on Cayston until yesterday and switched to Colistin. Had increasing sob all day yesterday to the point I used O2 last night. This A.M seems much improved with the SOB. Strange!
DjFunkyFife
New member
Well i guess i'll chime in again. I;ve been on orkambi since Nov. 24.. so, ~6 weeks. So far no positive or negative change in how i feel. At all. A few GI symptoms the first couple days, but those went away, and could possibly have been a coincidence. It does seem to have lowered my blood sugars slightly, however, that was in the first couple weeks. Since then, they've gone back up to pre-orkambi levels. Odd. I did have a clinic appointment last wednesday at USC, and the numbers i posted were the best i've had in a year or so, but only by a few decimal points above last visit (in august)
View attachment 546
While i have your (semi-)un-divided attention: there's something that has always bugged me, and if i had ever asked this question, i really dont remember the answer, so i asked my doctor this past visit. If the numbers my lungs post are roughly in the 70's then, why, if a normal person can run 10 minutes, cant i run 7 minutes? Why do i feel like i'm gonna die after 1 minute of running? I had always assumed that there was some other limiting factor besides just those numbers that kept my performance down. He said, in a nutshell: Because my muscles and heart aren't trained. i said... huh?? Basically, what HE'S saying is that my muscles have just adapted to less physical activity, and thats their comfort zone. Same with the heart. So i said (to myself) well thats just unacceptable! So i'm on a mission now, to change that. So since that visit i've been on a mission to increase my lung/heart endurance. 2 ways to measure any improvement are of course, actual running, and for me, jumping jacks. When i run, i always have my dog on his leash, so i just time myself to see how long i can go. I started keeping track of this stuff pretty much when i started orkambi, for orkambi, but that was a bust (meaning, for over a month i saw no orkambi-definite improvement) but now i'm just simply using it to keep track of my improvement. When i first started, i could run just under a minute. Now i'm up to about 2:10. BUT, there's variables in there, i dont always take the same route, and it's not flat ground. ( i still do think thats improvement tho.) So, the second way, jumping jacks. Doing jumping jacks in my living room, gets rid of all possible variables (other than a few, like time of day, medicine that may be in me, etc) and is the best way for me to gauge improvement. I try to do a set every day, and push myself to do a few more than the previous day. Jumping jacks seem to pretty much work must of the muscles, and the heart, and are easy to do, and do not require equipment. So when i started this experiment, i got tired out at 57. About a month later, and i can do 160 at a time. Which i think is progress. If i can keep up this regimen, it may well increase my numbers further, which would be nice, so apparently there is some truth to what he said. Who knew?! (probably everyone but me)
View attachment 546
While i have your (semi-)un-divided attention: there's something that has always bugged me, and if i had ever asked this question, i really dont remember the answer, so i asked my doctor this past visit. If the numbers my lungs post are roughly in the 70's then, why, if a normal person can run 10 minutes, cant i run 7 minutes? Why do i feel like i'm gonna die after 1 minute of running? I had always assumed that there was some other limiting factor besides just those numbers that kept my performance down. He said, in a nutshell: Because my muscles and heart aren't trained. i said... huh?? Basically, what HE'S saying is that my muscles have just adapted to less physical activity, and thats their comfort zone. Same with the heart. So i said (to myself) well thats just unacceptable! So i'm on a mission now, to change that. So since that visit i've been on a mission to increase my lung/heart endurance. 2 ways to measure any improvement are of course, actual running, and for me, jumping jacks. When i run, i always have my dog on his leash, so i just time myself to see how long i can go. I started keeping track of this stuff pretty much when i started orkambi, for orkambi, but that was a bust (meaning, for over a month i saw no orkambi-definite improvement) but now i'm just simply using it to keep track of my improvement. When i first started, i could run just under a minute. Now i'm up to about 2:10. BUT, there's variables in there, i dont always take the same route, and it's not flat ground. ( i still do think thats improvement tho.) So, the second way, jumping jacks. Doing jumping jacks in my living room, gets rid of all possible variables (other than a few, like time of day, medicine that may be in me, etc) and is the best way for me to gauge improvement. I try to do a set every day, and push myself to do a few more than the previous day. Jumping jacks seem to pretty much work must of the muscles, and the heart, and are easy to do, and do not require equipment. So when i started this experiment, i got tired out at 57. About a month later, and i can do 160 at a time. Which i think is progress. If i can keep up this regimen, it may well increase my numbers further, which would be nice, so apparently there is some truth to what he said. Who knew?! (probably everyone but me)
DJ, good for you! As you know exercise is very important for us Cfers. I go to the gym 3 times a wk. doing 11/2 hr. Or more Work out each time. I am not able to do treadmill any more because of arthritis in ankle from old football injury. I now do 6 miles on supine bike with work load of 6, usually takes about 30 min. more than double my resting heart rate of 60, Good luck on your work outs!
I am trying something a little different. I am doing a albuterol Neb RX before and after the Orkambi dosing and Colistin Neb. It seems to help today because I was able to go to the gym for 1&1/2 hrs. after the Colistin Neb Rx this A.M. Just trying to get through the bronchospasm with the Colistin and Orkambi combination.
I decided to stop my Neb. Colistin because of the significant bronchospasms. I noticed a improvement in one day, now at day 2 bronchospasm completely gone. So I will for the time being just Neb. Cayston every other month with the Orkambi.
Feel mcuh better today with out Neb Colistin!
Feel mcuh better today with out Neb Colistin!
Been awhile since I've posted. DS is 12 and started Orkambi the end of July. He had some initial digestive issues -- very loose stools that weren't typical malabsorption. Also had a bit of a stuffy nose.
Mentioned before we've noticed his breathing while he sleeps is better. Quieter, no mouth breathing. Doesn't get that throat clearing, cough laugh when he's laughing, nor does he gasp for breath if he's excitedly talking. Also getting taller and gaining weight.
Last week he got a head cold. Normally ds' nose never runs. First time I ever saw his nose run, was at age 2 1/2 when he started Pulmozyme and was using a mask. His nasal mucus is so thick, if he's got a cold he needs to do sinus rinses to dislodge all that crud. Last week he sneezed and he looked sooooo shocked and surprised as he sneezed out a bunch of snot. Like, where the heck did that come from. Seriously, he's 12 and this is the first time it's ever happened.
Yesterday, he had a well child visit at the pediatrician/local cf doctor. Usually bordering around the 50th percentile for height and weight he's at 70th percentile for weight and 67th for height. Did a cf culture, so we'll see in the next couple of weeks if he's growing anything -- usually has steno maltophilia. And later in the month he'll have pfts, which he really hasn't mastered yet and a lung scan.
Mentioned before we've noticed his breathing while he sleeps is better. Quieter, no mouth breathing. Doesn't get that throat clearing, cough laugh when he's laughing, nor does he gasp for breath if he's excitedly talking. Also getting taller and gaining weight.
Last week he got a head cold. Normally ds' nose never runs. First time I ever saw his nose run, was at age 2 1/2 when he started Pulmozyme and was using a mask. His nasal mucus is so thick, if he's got a cold he needs to do sinus rinses to dislodge all that crud. Last week he sneezed and he looked sooooo shocked and surprised as he sneezed out a bunch of snot. Like, where the heck did that come from. Seriously, he's 12 and this is the first time it's ever happened.
Yesterday, he had a well child visit at the pediatrician/local cf doctor. Usually bordering around the 50th percentile for height and weight he's at 70th percentile for weight and 67th for height. Did a cf culture, so we'll see in the next couple of weeks if he's growing anything -- usually has steno maltophilia. And later in the month he'll have pfts, which he really hasn't mastered yet and a lung scan.
Aboveallislove
Super Moderator
Okay, I'm crying over him sneezing snot! How upside down is our world! Thanks for the update....hugs
Been awhile since I've posted. DS is 12 and started Orkambi the end of July. He had some initial digestive issues -- very loose stools that weren't typical malabsorption. Also had a bit of a stuffy nose.
Mentioned before we've noticed his breathing while he sleeps is better. Quieter, no mouth breathing. Doesn't get that throat clearing, cough laugh when he's laughing, nor does he gasp for breath if he's excitedly talking. Also getting taller and gaining weight.
Last week he got a head cold. Normally ds' nose never runs. First time I ever saw his nose run, was at age 2 1/2 when he started Pulmozyme and was using a mask. His nasal mucus is so thick, if he's got a cold he needs to do sinus rinses to dislodge all that crud. Last week he sneezed and he looked sooooo shocked and surprised as he sneezed out a bunch of snot. Like, where the heck did that come from. Seriously, he's 12 and this is the first time it's ever happened.
Yesterday, he had a well child visit at the pediatrician/local cf doctor. Usually bordering around the 50th percentile for height and weight he's at 70th percentile for weight and 67th for height. Did a cf culture, so we'll see in the next couple of weeks if he's growing anything -- usually has steno maltophilia. And later in the month he'll have pfts, which he really hasn't mastered yet and a lung scan.
Great Ratatoska, sounds like Orkambi is helping you son. Praying this continues.
I have noticed a increase in clear drainage from my nose. The mucous coming out of my lungs is definitely thinner? I am at day 37, still having a little tightness in chest about 2 hrs. I take Orkambi. Praying for your son!
I have noticed a increase in clear drainage from my nose. The mucous coming out of my lungs is definitely thinner? I am at day 37, still having a little tightness in chest about 2 hrs. I take Orkambi. Praying for your son!