rubyroselee
New member
My shipment is coming Weds! I'll post updates once I start.
Anyone else that started recently have any more experiences to share?
Anyone else that started recently have any more experiences to share?
Post Your Orkambi Updates
- Thread starter Aboveallislove
- Start date
W
welshwitch
Guest
Nothing to add, but yay Leah 
imported_Momto2
New member
My clinic (UNC chapel hill) has been VERY on top of things. Had an appt in late July, they immediately put in the paperwork (I already had DNA typing and liver tests on file), and Vertex called me within the week to verify all info. They handled the insurance company for us, who is doing complete coverage of the drug, (BC/BS) and I should get it tomorrow. So, less than 3 weeks from start to finish. I have heard that Vertex is trying to get to all the folks with the lower FEV1's first, dont know if that's true, but with a value in the high 30's, I probably qualify for the group. Anyhow, now I wait, with a bit of trepidation since I have heard the initial side-effects, while your body gets used to the major changes, can be pretty debilitating for the first few days to 1-2 weeks out. I hope I'm in the group that has almost no side-effects. (FART2) I'll let folks know how it goes!
Diana Blue
New member
After a week of intense discussions with CCS, CALL Ombudsman, and Chief Medical Officers office, we got one month's worth of Orlando. My son took it for 2 days then threw up violently for hours day 3. We just started again yesterday. Hoping it was caused by how much mucus he was getting up.
Diana
Lawson 18 yo
Diana
Lawson 18 yo
Aboveallislove
Super Moderator
I'm so glad you got it Diana. Could you clarify...was he coughing up hge amounts of mucus? Did the vomiting start after coughing it up? Did he feel nausa and sick while vomiting? Hope he's feeling better..hugs
imported_Momto2
New member
Started Orkambi last night. Had what I would describe as a pretty bad reaction. Severe bronchospasms and asthmatic rxn, violent coughing, pulse 95+, resp 25-30/min, O2 sats barely maintaining on 3L oxygen with frequent dips to 84%. Severe rhinitis, fever, intense, and I mean INTENSE coughing. It felt like I was drowning in my own fluids. My body was releasing water into my lungs and sinuses like CRAZY. Finally after 4 hours of this I took some hydrocodone and the rxn quieted down to simple familiar bronchospasms, but I still wasnt able to really get any sleep since my system was so worked up.
With some trepidation, I took this mornings dose and it was much milder. Slight fever, minor bronchospasms, an increase in cough and rhinitis, but not the violent rxn I had before. I also had mild nausea, headache. My sats dropped a little, but no 02 needed, no real increase in pulse and respiration. Yeehaw.
With some trepidation, I took this mornings dose and it was much milder. Slight fever, minor bronchospasms, an increase in cough and rhinitis, but not the violent rxn I had before. I also had mild nausea, headache. My sats dropped a little, but no 02 needed, no real increase in pulse and respiration. Yeehaw.
imported_Momto2
New member
I should add that the Orkambi was clearly working. I coughed a ton of sh*t up. Despite the rxn, I'm pretty excited about it.
Aboveallislove
Super Moderator
im so glad it is working for you but have e scary! How did the doctors prepare you? Is there some emergency protocol or is it just this is the hazing you have to suffer and it won't kill you but it will feel like it will? Thanks so much for the update. I personally love be all the play be plays to see what is working what to expect and also to yippee right along with others!
imported_Momto2
New member
The doc said he was worried about bronchospasms, but I think even he is gonna be surprised at the magnitude. I dont know if there is any emergency protocol. Luckily, (or not) I am on 02 at night and sometimes during the day, so I had that on hand. If I hadnt had the 02 around, I would have HAD to go the ER. It was that bad, and you're talking to a woman who has broken her ribs multiple times from coughing and NOT gone to the ER. The narcotic I have around to quiet bad coughing spells, but i havent used it in months. I'm really hoping my cells are quick learners .......
Diana Blue
New member
Doing better
Aboveallislove-- sorry about all the auto corrects. yikes. He did start coughing first, felt nauseated the whole time. So far this time, he is feeling very good, appetite fine, coughing up tons.
Diana
Lawons, 18 yo
Aboveallislove-- sorry about all the auto corrects. yikes. He did start coughing first, felt nauseated the whole time. So far this time, he is feeling very good, appetite fine, coughing up tons.
Diana
Lawons, 18 yo
A
Allansarmy
Guest
I will follow you carisabo. My son will start jis ORKAMBI maybe in another week. He has a lung infection now with PICC line at home doing double IV twice daily. His PFTs were about 67% which is bad for him. He usually does better upper 80s to low 90s. Been sick for a few months. Also was in hospital same thing 4 months ago. First time ever in 19 years he has been this bad. So doctor wants him to start Orkambi when he is well as there may be side effects.
Cant wait to see how well you. Prayinf everything goes perfect! !
Cant wait to see how well you. Prayinf everything goes perfect! !
Aboveallislove
Super Moderator
Thanks Diana and Mom for added info. Allansarmy ....so sorry he's having another exacerbation. I'll shoot some prayers up for him and hope that Orcambi will turn things around soon.
DjFunkyFife
New member
Has anyone who is taking the drug noticed any change mentally?
I ask this because, i dont have depression, but i can see a slow, gradual process heading that way. There's times where i'm just worn out, physically and mentally. With no motivation to do the things i need to do (whether that be around the house, or errands, or whatever.) I've noticed that when i wake up, it seems to take longer than in the past for me to actually get out of bed. And it feels like a combination of physical and mental barriers. Physically, i dont feel energized after a night of sleep, mentally i'm, like "do i HAVE to get up?" from the first time my alarm goes off, i snooze an average of another 45 minutes before actually getting up (i think thats because i know what time i HAVE to be up, in order to be ready for work, so i get up no sooner, even tho i'd like to, because, believe it or not, mornings is when i have more energy.)
Since, from what i've read and heard, all of the encompassing problems of CF are caused by one small thing, which apparently this drug targets, then i am wondering if it has made any noticeable changes mentally for anyone? (I've read plenty about the physical changes people are experiencing)
Like most, i'm not trying to get my hopes up too much, but am curious what changes people are experiencing.
Thanks!
I ask this because, i dont have depression, but i can see a slow, gradual process heading that way. There's times where i'm just worn out, physically and mentally. With no motivation to do the things i need to do (whether that be around the house, or errands, or whatever.) I've noticed that when i wake up, it seems to take longer than in the past for me to actually get out of bed. And it feels like a combination of physical and mental barriers. Physically, i dont feel energized after a night of sleep, mentally i'm, like "do i HAVE to get up?" from the first time my alarm goes off, i snooze an average of another 45 minutes before actually getting up (i think thats because i know what time i HAVE to be up, in order to be ready for work, so i get up no sooner, even tho i'd like to, because, believe it or not, mornings is when i have more energy.)
Since, from what i've read and heard, all of the encompassing problems of CF are caused by one small thing, which apparently this drug targets, then i am wondering if it has made any noticeable changes mentally for anyone? (I've read plenty about the physical changes people are experiencing)
Like most, i'm not trying to get my hopes up too much, but am curious what changes people are experiencing.
Thanks!
Twistofchaos
New member
#DjFunkyFife Just a thought but that could just be the result of summer/humidity. Here it's terrible at the moment and am experiencing much of what you are describing and am nowhere near Orkambi. (looks like it'll be a while here in the Netherlands, but reading along with you guys all the same if you don't mind.)
It's the hondsdagen, the dog days. The worst time of the year between roughly 20th july and 20th august.
It's the hondsdagen, the dog days. The worst time of the year between roughly 20th july and 20th august.
DS has been crankier; however, I attribute it to him having a very busy last couple of weeks being outside -- yesterday he went on a 20+ mile bike ride with his daycare, today he's at a baseball game, he's gone camping, swimming, and while he usually spends most of his days in the summer outdoors, he's been extra busy in the evenings with bike riding, swimming, staying up later because it's summer. We've had an especially hot, humid summer. It's usually much drier where we live.
J
Jswans
Guest
Funky... I was on orkambi drug 2 years... it was a nightmare from the start. Coughing alot because of constant constriction and tightness in the lungs. When I started I was 70%.. within weeks I dropped to 60 and kept falling.. I lost energy and motivation to work out and be active. Which was extremely out of the character for me... the worse I dropped to was 50 when I got sick and I was convicing myself that I needed iv antibiotics which I barely ever need.. the drug was making me very short of breath and tired. All I wanted to do was to sit on the couch or sleep... I tried very hard to continue the study but quit the week before it was approved because I realized this drug isn't for me and a 2% increase that supposedly happens never did and the side effects never subsided.. I finally just got sick of feeling that way.. Im a very positive and good minded person but I could tell it was changing me mentally and physically for being on it and going through that... it's not a miracle drug by any means and it might help a few because everyone is different but keep in mind you don't have to take it and that there are much better drugs being developed in the pipeline. I'm volunteering for two coming up in the fall.. ever since I came off the drug I feel 100x better. Getting back to work full time, running a mile every other day (working out is the best treatment you can possibly do for your body, I can't stress that enough!!.) And got my fevs back up to the 70s...when i came off the drug, my lung function climbed dramatically within 3 days!. Hopefully this information will be useful for a lot of people but don't assume this drug is going to work... the foundation put alot of money into it, it's not like they were going to let it fail no matter what the numbers showed.the foundation has some of the best lobbyist in Washington, having the 809 (orkambi) fail would have been huge loss in the stock market and people would not fund vertex for future drugs if the numbers showed otherwise.. they were very crafty on the words and vocabulary they used to present the data to the fda, but glad they did because vertex numbers did go up because of it which means more investors. 5 out of 9 people ended up stopping it by the time it ended in my center.I'm dissapointed with how they made it seem like it's going to be very beneficial for people, and again it might be, but please cone off of it for a couple weeks toreally feel the difference once you've been doing it for awhile... sorry so long but i think its best for me to share my 2 very long years on that drug. Sleep easy and go for a jog... nothing heavy just 100 yards and start small... don't push it to hard because then you'll make yourself not want to do it again... FYI I did vx-661 phase 2 for 28 days before I got into the 809, 770 study and felt really good on that drug.. I'd expect better results from the phase 3 study when they get complete. I'd expect approval within a year or 2 on that one....
imported_Momto2
New member
Jswans, thanks so much for your input. I have really noticed the SOB, which starts within about an hour of taking the drug. However, for me personally, the amount of crap I am coughing up and getting out of my lungs, may be beneficial enough to outweigh the negativity of the bronchospasms. It does seems as though my sats overall, are increasing. We'll just have to wait and see. The excessive coughing at night does make it hard to sleep. So far, now on day 4, the fever has stopped but I still get mild rhinitis, (enough to be annoying) mild diarreah, and night sweats. It's all a balancing act. Right now my plan is to stay on the drug, assuming the SOB doesnt get any worse, and see where my FEV1 is in October at my next appt. Then I'll decide longer term if this drug is for me.
J
Jswans
Guest
Absolutely... try it out, everyone is different.. I never had fevers or tummy issues. Just the feeling of an elaphent sitting on my chest or a rope tighten my lungs after taking it... some days were better then others but nothing to keep me on it... also noticed back pain on my lower right side. I think that was caused from sob and my lungs struggling to get a good breath. Overtime the pain just started hurting more and more... after stopping drug all the issues went away..
One point of caution, my doctor mentioned that a few people that had come off of Kalyadco had developed 'normal people' pneumonia shortly after. So if these drugs aren't working for you, I agree that coming off them is wise, but do so with the knowledge and possible observation of you clinic team.