imported_Momto2
New member
Robinb29, I'm offsetting my antacid by 2 hours as well. Seems to work. 
For people taking Orkambi
- Thread starter KellyAnneB
- Start date
Aboveallislove
Super Moderator
Robinb29, I'm offsetting my antacid by 2 hours as well. Seems to work.
A couple quick questions, if I might impose. DS is on both Zantac and Prilosac (he's 6 so I'm looking ahead to when it is approved to have all the info I need for discussion with doctors and for being prepared for the contingenices). Is the concern with those that it makes Zantac and Prilosac less effective or that they make Orcambi less effective? Or that it causes some other bad side effect? Did the doctors give you guys the 2 hour suggestions? I'm thinking that would work perfect, as we do Zantac first thing in a.m. and then all the treatments and by the time I have those done and breakfast ready its 2 hours and then in evening, I'd just move the Zantac and Prilosac up a tad so get a window.
Hope Day 2 went better. Do you do FEV at home so you can tell if any change yet???
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erkushio
Guest
Hello. My husband has CF. His lung functioning is apx. 25%, O2 is always around 98%, and he is 29 years old. He is on day 3 of taking Orkambi and has noticed that he has a lot of trouble breathing after he takes his inhaled Colistimethate. Has anyone else had these similar symptoms after inhaling this antibiotic or other antibiotics?
Hi and welcome erkushio!
Sorry to hear about your hubby having problems with Colistin. I had the same reaction to Colistin as well as Tobi. With Tobi, my first several cycles I tolerated it okay, but then it started causing bronchospasms, making me really out of breath. It progressively got worse as the month went on. I tried to muscle through with extra doses of albuterol before and after, but eventually it so bad I had to stop all together. I tried it again (per drs orders) on my next "on" month, and it only took a couple doses before I felt HORRIBLE. Very similar issue with colistin, except my doc once had me try it again after I had not done it for a very long time and I had a very serious reaction. Within and hour, very hard time breathing, fever of 103, rapid heart rate etc. I ended up in the ER and then hospitalized for about 5 days. I was feeling quite a bit better about 24 hours later, but my lung function was still down about 20% from baseline. They said my white blood cell count was VERY VERY high the night I came in, but 24 hours later is was almost normal. So it was most likely some sort of weird allergic reaction, although I had used it before. Very odd and scary.
Anyway, I know there are a lot of members on here who have trouble with bronchospasms/shortness of breath with Tobi, and a few with that problem with Colistin. It's actually pretty common. Is this the first time he's used it? Or has he used it before with no problems?
I'm sure he knows this, but pre and post dosing with a few puffs of albuterol would be worth a try! Also, can he directly relate it to the Colistin? Because as you probably read, other members are having shortness of breath with Orkambi.
Best of luck to you guys!
Autumn 34 w/CF
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erkushio
Guest
Thank you Autumn. He has taken Colistin for years now and hasn't had any trouble. It is just in combination with orkambi that he is currently having these reactions. Directly after he inhales Colistin and for about 4 or so hours after he has shortness of breathe and bronciospasms. Then he feels better until the next dose of colistin.
Hmmm, that's interesting. And it's a bummer, sorry.
My advice would be to talk to his doc and see what he thinks would be the best course of action. I wouldn't want him to continue the Colistin if it continues to cause the shortness of breath, because it could begin to effect his PFTs. Has he ever done Cayston? Perhaps switching inhaled antibiotics could be an option until we see what happens with the Orkambi. I'm hoping after some time on Orkambi, the shortness of breath people are experiencing will dissipate and perhaps in his case he would be able to better tolerate Colistin again.Just some thoughts! Like I said, if it were me I'd definitely give the doc a call and get their thoughts.
Take care and keep us posted!
Autumn
rubyroselee
New member
erkushio -
Unfortunately, bronchospasm is one of the side effects of some inhaled antibiotics. I have the same problem with any form of tobramycin, where I am extremely short of breath for several hours after taking the medication. I finally had to stop my tobramycin last month because it was unbearable, but I dealt with it for several months until it got bad enough. In the past, I have had the same issue with Colistin. The last time I took Colistin was in early 2008, and I was experiencing the same chest tightness with it. So I decided to stay away from it. However, because tobramycin is no longer working for me, I thought I'd give Colistin one more try this month. So far, it has been going well with no bronchospasms. So there is hope that he'll be able to return to the med again some day I suppose
But as far as with the Orkambi, it is very possible there is chest tightness going on with that as well. The chest tightness that comes with the Orkambi also seems to be coming with a "crackly" sound in the throat area.
Neither is pleasant, so hoping he can figure out what works and doesn't work for him soon so he can feel better.
Unfortunately, bronchospasm is one of the side effects of some inhaled antibiotics. I have the same problem with any form of tobramycin, where I am extremely short of breath for several hours after taking the medication. I finally had to stop my tobramycin last month because it was unbearable, but I dealt with it for several months until it got bad enough. In the past, I have had the same issue with Colistin. The last time I took Colistin was in early 2008, and I was experiencing the same chest tightness with it. So I decided to stay away from it. However, because tobramycin is no longer working for me, I thought I'd give Colistin one more try this month. So far, it has been going well with no bronchospasms. So there is hope that he'll be able to return to the med again some day I suppose
But as far as with the Orkambi, it is very possible there is chest tightness going on with that as well. The chest tightness that comes with the Orkambi also seems to be coming with a "crackly" sound in the throat area.
Neither is pleasant, so hoping he can figure out what works and doesn't work for him soon so he can feel better.
I'm on day 2 of Orkambi and yesterday, about 3-3.5 hours after taking the first dose, I had a strange feeling almost like an allergic reaction. My throat got tighter, I got hot and started sweating in an air conditioned movie theater, and I had a hard time taking deep breaths. It passed a little after about half an hour, but the closed throat feeling remained. When I came home I took a few puffs of albuterol and that helped. Then last night when I was trying to go to sleep, about two hours after taking the second dose, the same thing happened (which was great since I'm prone to insomnia anyway). I would have been more concerned had I not heard here and from my doctor that chest tightness was a side effect; although, my doc said she found that was usually more common among people with very low lung function, and my problems have always been digestive.
When I woke up this morning, it took me a while to get out of bed—I just felt groggy and bleh. I'm hoping some coffee and a quick trip to the gym, if I can get my butt there, will help me snap out of it a little. I'm kind of scared for the next dose though...it seems like most people on here are having similar side effects for close to a week.
Also—I'm doing the saline and vest as I write this, and I just coughed up some mucus, which pretty much never happens with the vest for me; it's really only when I exercise that I cough stuff up. That could be from the throat / chest tightness, but I'm going to tell myself it's because of the Orkambi and it's a good sign. Thanks for everyone contributing to this thread; it's really great to be able to read about other people's experiences in these unchartered waters.
When I woke up this morning, it took me a while to get out of bed—I just felt groggy and bleh. I'm hoping some coffee and a quick trip to the gym, if I can get my butt there, will help me snap out of it a little. I'm kind of scared for the next dose though...it seems like most people on here are having similar side effects for close to a week.
Also—I'm doing the saline and vest as I write this, and I just coughed up some mucus, which pretty much never happens with the vest for me; it's really only when I exercise that I cough stuff up. That could be from the throat / chest tightness, but I'm going to tell myself it's because of the Orkambi and it's a good sign. Thanks for everyone contributing to this thread; it's really great to be able to read about other people's experiences in these unchartered waters.
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erkushio
Guest
Thank you everyone for your information and help. My husband has been on Cayston for about a year or so and that seems to work for him well. We have talked with the Dr. and he said that the shortness of breath and bronciospasms are side affects of the Orkambi and they should subside with time and after his body becomes adjusted to the changes from Orkambi. I just hope these symptoms change soon. It seems like most people on it still have the tightness and shortness of breathe after about a week and a half or so, but the results of the studies for Orkambi look promising to increasing lung functioning.
imported_Momto2
New member
Anyhow, the Orkambi was quite an ordeal to begin, but is getting better as time passes.
Day 1- Such violent coughing and severe SOB (even on 3L 02) that it was a close thing about going to the ER. Sats 84-88 1-5 hours post-Orkambi.
Ran a fever, severe rhinitis, insomnia, night sweats.
Day 2- Severe SOB again, 02 stats dropping but not as bad as before, nausea, headache, fever. Severe rhinitis. Tired.
Day 3- Moderate SOB, some diareah, a lot of coughing, but not violent, more night sweats, insomnia. Severe rhinitis. Tired.
Day 4- SOB, need oxygen, 4 hours of coughing followed by severe insomnia. Rhinitis and tired.
Day 5-Mild SOB, headache, some dizziness, some supplemental 02 needed. Less coughing, was able to sleep with Ambien. Moderate rhinitis.
Day 6- Moderate rhinitis, cough much better, some dizziness. Some increased cough and SOB.
Day 7- Fever of 101.7 Dizziness, SOB, headache, very very tired.
Day 8- (today) low grade fever, headache, some dizziness, mild coughing and SOB.
Day 10. Finally starting to get back to baseline. Decent night's sleep, some nausea.
Day 1- Such violent coughing and severe SOB (even on 3L 02) that it was a close thing about going to the ER. Sats 84-88 1-5 hours post-Orkambi.
Ran a fever, severe rhinitis, insomnia, night sweats.
Day 2- Severe SOB again, 02 stats dropping but not as bad as before, nausea, headache, fever. Severe rhinitis. Tired.
Day 3- Moderate SOB, some diareah, a lot of coughing, but not violent, more night sweats, insomnia. Severe rhinitis. Tired.
Day 4- SOB, need oxygen, 4 hours of coughing followed by severe insomnia. Rhinitis and tired.
Day 5-Mild SOB, headache, some dizziness, some supplemental 02 needed. Less coughing, was able to sleep with Ambien. Moderate rhinitis.
Day 6- Moderate rhinitis, cough much better, some dizziness. Some increased cough and SOB.
Day 7- Fever of 101.7 Dizziness, SOB, headache, very very tired.
Day 8- (today) low grade fever, headache, some dizziness, mild coughing and SOB.
Day 10. Finally starting to get back to baseline. Decent night's sleep, some nausea.
imported_MaggieB
New member
I'm starting today, and I'm a bit terrified! I'll keep you posted!
saintoffeon
New member
Was it this bad during the trial?
I see a few really great stories that make it seem like it does more than even the numbers suggest. Then I see a bit more stories about it helping a teensy bit, but just comforting people in that they might not decline as much.
But these first week stories are spooky; it almost sounds like it's darn near killing some people, and it has to be hard in the moment when you're not sure if/when it's going to "break."
Nobody probably believes it'll be a miracle for them, but I don't think so many people anticipated it'd be so bad (at first, not saying it'll stay that way because who knows, and besides, it did make it out of trial with good results on average).
I see a few really great stories that make it seem like it does more than even the numbers suggest. Then I see a bit more stories about it helping a teensy bit, but just comforting people in that they might not decline as much.
But these first week stories are spooky; it almost sounds like it's darn near killing some people, and it has to be hard in the moment when you're not sure if/when it's going to "break."
Nobody probably believes it'll be a miracle for them, but I don't think so many people anticipated it'd be so bad (at first, not saying it'll stay that way because who knows, and besides, it did make it out of trial with good results on average).
imported_Momto2
New member
Saintoffeon- have no idea, but I did hear that a lot of folks quit the trials part-way through because of these charming side effects.
And I personally think it made it out of the trials with pretty mediocre results, but with an FEV1 of 39 and dropping, I'll try anything passed by the FDA.
But I was really hoping I'd be in the small percentage that had great results with minimal side-effects. So far, no luck with the minimal side effects, but I'm going to give it some time to make sure the "great results" arent hiding around the next corner. Hope is what drives us, right?
And I personally think it made it out of the trials with pretty mediocre results, but with an FEV1 of 39 and dropping, I'll try anything passed by the FDA.
But I was really hoping I'd be in the small percentage that had great results with minimal side-effects. So far, no luck with the minimal side effects, but I'm going to give it some time to make sure the "great results" arent hiding around the next corner. Hope is what drives us, right?
saintoffeon
New member
It just seems so disproportionate. Maybe the people who are tolerating it well are just less vocal =)
But yeah, makes you wonder how it got out of safety and efficacy with how many different ways it has of hurting people. If it was the Food and Car Administration, and you had to pass similar tests, and people said, well, the air conditioning never turns on, the wheel turns 100% to the right but only 70% to the left, the seat belts are made of licorice and it tops out at a smokin' 44 MPH...I don't think it'd be street-legal everywhere.
I'm at 34% and have bronchiectasis. There is a long list of horrible things I'd do to try this for myself. Four percent improvement is way better than my 3% annual decline, so if they meet in the middle I'm cool with pseudo-stopping here. It's not fun, but slowing down from here instead of racing down to "there" sounds just fine!
If they're for different mutations, who are the people with extensive experience with both? Were there arms of the trials that took people outside of the given mutation groups anyway just to see what would happen (Presumably, to know that Kalydeco wouldn't help double-deltas, for example)?
Hope is about all there is driving me, but it also counts for everything.
Cheers for your collective toughness.
But yeah, makes you wonder how it got out of safety and efficacy with how many different ways it has of hurting people. If it was the Food and Car Administration, and you had to pass similar tests, and people said, well, the air conditioning never turns on, the wheel turns 100% to the right but only 70% to the left, the seat belts are made of licorice and it tops out at a smokin' 44 MPH...I don't think it'd be street-legal everywhere.
I'm at 34% and have bronchiectasis. There is a long list of horrible things I'd do to try this for myself. Four percent improvement is way better than my 3% annual decline, so if they meet in the middle I'm cool with pseudo-stopping here. It's not fun, but slowing down from here instead of racing down to "there" sounds just fine!
If they're for different mutations, who are the people with extensive experience with both? Were there arms of the trials that took people outside of the given mutation groups anyway just to see what would happen (Presumably, to know that Kalydeco wouldn't help double-deltas, for example)?
Hope is about all there is driving me, but it also counts for everything.
Cheers for your collective toughness.
T
trghpu1994
Guest
Our daughter has been on it a week. At first she had some chest congestion but wasn't bad. It went away. She hasn't had any problems. The only thing she has noticed is an improvement in her sinuses
imported_Momto2
New member
Thats awesome I hope she sees improvement in other areas as well. (FART2) If you dont mind me asking, what is her FEV1?
I hope she sees improvement in other areas as well. (FART2) If you dont mind me asking, what is her FEV1?
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erkushio
Guest
Imported_Mom2to- He has maintained 25 to 30% lung functioning for the past 15 or so years. Because this is his normal he is not on any oxygen and has never been on any. I appreciate your update about how you have been doing each day. My husband has had similar symptoms without the rhinitis or fever. He is doing better today at day 5 than when he started. So far he has not had oxygen on Orkambi yet but he probably could have used this the first 2 nights.
T
trghpu1994
Guest
She is at 83%. She rarely complains about anything healthwise except taking meds. Hope she continue to improve. First day of school is tomorrow. Hope she will stay healthy last yr she only missed 2 days for strep throat
Aboveallislove
Super Moderator
i must admit all the horror stories of the start up we're starting to concern me...so I pulled the data. Only five percent on drug dropped out and two percent in placebo. Adverse events whether drug related or not are also shown. Given study was limited to those 40 fev or more those under or near might be having more issue ...hopefully all can get past the bad part soon.
http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=3fc1c40e-cfac-47a1-9e1a-61ead3570600