For people taking Orkambi

[Ratatosk]

DS has been on it for 3 weeks. He had some initial GI issues -- really loose stools. A bit of a stuffy nose. I don't believe he is as salty. He's had a really good appetite, energy level is fine. He continues to gain weight and has grown an inch in the past month. could just be regular growth. Indicated he did NOT have any chest tightness. He usually doesn't cough or have anything productive to bring up, but has told me a few times he's coughed up some mucus...

I know some of the people on kalydeco spoke of similar issues of bringing up old hardened pieces of mucus within hours of taking their first dose.

 

[saintoffeon]

Thanks trghpu1994 -- not that it was directed at me but contributing a happy story =)

And thanks aboveallislove -- some of the extra detail is more useful than what's broadly supplied, like having to take more of something to get an effect rather than not using it entirely.

Incidentally, I kind of feel bad for the two percenter placebo people. They weren't even on anything, and wanted to get off the thing they weren't on because it was so bad, only to continue to experience the bad that they can't get off of because it was just them the whole time.

 

[Allansarmy]

Hello eveyone, going to reserve this spot just so its not like on page 50 a year from now. My son is 19 years old and diagnosed at 4 months. The doctors have him starting Orkambi on Monday. That is 4 days from today. He currently has a PICC line and he is getting IV antibiotics due to his FEV1 being at 64% when he was in the hospital last week. He is used to being in the upper 90%. They want him to start Monday on his new med Orkambi when the clinic is open. They are worried about exacerbations and excessive lung fluid. He does have a tendency to cough a lot especially in the morning so we are going to expect all of the symptoms that all of you are mentioning, possible nausea, possible fever. I will come back here and post daily entries just so new patients know what to expect.

- Excited and nervous for my son.

 

[RobinB29]

I've been having killer tummy issues my second week into Orkambi. An just an FYI and sorry if it's TMI but after I started this medicine I ovulated for the first time in months. I know in my youth having CF I often treated birth control casually because I knew women with CF had trouble getting pregnant so I wanted to leave out here a little warning out here that if you are a female taking this drug, it might result in increased fertility and this drug has not been tested safe for pregnant women.

 

[AH11201]

I've been having killer tummy issues my second week into Orkambi. An just an FYI and sorry if it's TMI but after I started this medicine I ovulated for the first time in months. I know in my youth having CF I often treated birth control casually because I knew women with CF had trouble getting pregnant so I wanted to leave out here a little warning out here that if you are a female taking this drug, it might result in increased fertility and this drug has not been tested safe for pregnant women.

Wow, that's really interesting. I haven't been able to get my period naturally for five years (since I was in high school), and I just heard at the CFRI conference that CFTR can affect the hypothalamus, which is essentially your brain's control center for hormones. There are of course other reasons for increased female infertility in CF, but that new bit of information and your experience have me really curious.

 

[jaimers]

I've been having killer tummy issues my second week into Orkambi. An just an FYI and sorry if it's TMI but after I started this medicine I ovulated for the first time in months. I know in my youth having CF I often treated birth control casually because I knew women with CF had trouble getting pregnant so I wanted to leave out here a little warning out here that if you are a female taking this drug, it might result in increased fertility and this drug has not been tested safe for pregnant women.

there is a Facebook group I'm in that saw an increase in fertility for some women after they started taking kalydeco--had been trying for a long time to get pregnant and had not been able to but all tests showed no issues and then found themselves pregnant within a few months of starting K. so I wonder if there could be similar results with Orkambi.

 

[Brandon Justice]

I'm delta F508 homozygous, I'm 20 years old with an FEV1 of 89% and it's all thanks to Orkambi. I've been on the drug for 2 years through its clinical trial phase. Trust me everyone, it's a miracle. Diet and exercise and certain health and wellness products along with Orkambi is key to your success. Take a second to run past my blog brandoncysticfibrosis.wordpress.com I started it yesterday so folks who are interested can track my journey and know that Orkambi not only works, it blew away all of my expectations.

 

[scanboyd]

Orkambi sounds like a great drug for us delta F508 folks but the cost from what I understand is some where around $259,000.00 a year. This is crazy. This will cause our insurance premiums to go out the roof. I thought Cayston was exp. but this is robbing folks financially without a gun. There is no way insurance companies can afford the cost. It will be passed along to the consumer. Insurance companies will stop insuring CF folks or employers will not hire you or family member that has a CF family member that they will be insuring, if they can? Got to better cost structure, realizing R&D is exp. for drugs but this is insane!

 

[Joe2007]

I'm delta F508 homozygous, I'm 20 years old with an FEV1 of 89% and it's all thanks to Orkambi. I've been on the drug for 2 years through its clinical trial phase. Trust me everyone, it's a miracle. Diet and exercise and certain health and wellness products along with Orkambi is key to your success. Take a second to run past my blog brandoncysticfibrosis.wordpress.com I started it yesterday so folks who are interested can track my journey and know that Orkambi not only works, it blew away all of my expectations.

Brandon,
do you remember what your first few weeks were like? Did you lose energy, body weight or lung function before the great benefits kicked in?
thanks

 

[Rossigrl]

I started Orkambi 2 days ago. I had chest tightness and extreme sob within 2 hrs of taking it. I have had to use my albuterol nebulizer 2 hrs after every dose i take and then one in between. It is an absolute aweful, scary feeling. I have an fev 1 of 47% and i am 36yo. I am going to stick it out of course and pray that there is an end in site to this side effect. My questions regarding this med are for those that have been on it for a while.
1. Do you find that you can skip enzymes and digest your meals?
2. We are going to Italy soon and I plan on having wine with dinner. Any idea if alcohol is okay with this med?
3. We do not want children and haven't had to worry about getting pregnant. Any idea if this will make it easier to get pregnant?
4. How long are these symptoms lasting for others and what do you do about it?
Thanks, Jen

 

[imported_Momto2]

Rossigrl. I hear ya. I thought I was going to drown the first couple of doses and had to turn the oxygen way up and it still didnt control the violent coughing. Had to finally dose with narcotics to calm everything down. Now, 13 days out, I just get SOB for about 1-4 hours after dosing, but still very tired, nauseous, some vomiting, insomnia, bad stomach pain, and some weightloss.

I dont usually take enzymes even though I am PI. I just dont eat fat and I do fine. Since I need fat with the Orkambi, I've started on Creon. Its just been adding to my misery.

Dont know about pregnancy.

 

[saintoffeon]

I got told Friday morning that the insurance was likely going to cover me, and that the paperwork just needed to be pushed through for an initial prior authorization. If all goes well, my first dose could be later this week.

I'm nervous but excited about my individual tolerance for the apparent sh--storm that could be headed my way side effects-wise, but I'm prepared to see how tough I really am against it. We've all dealt with some crazy, sometimes unspeakable crap, and I have faith all will endure.

I was thinking about doing a brisk jog for the couple hundred feet I'm normally capable of before taking it, and then if/when I push through the side effects, say a couple weeks or a month, doing the same thing and seeing how far I get. Taping it both times.

Has anyone attempted to do any postural drainage techniques when starting it? I just get this visual of everything pooling to the bottom if I'm sitting or standing when it all begins to loosen.

 

[Cubs fan Brian]

I started taking Orkambi on 8-14 and so far it's been a rough trip, just like that many others have posted. The runs something awful, shortness of breath and absolutely dead dog tired pretty much constantly. Those effects are gradually getting better but it's still at the point where I sort of dread having to take each dose.

Was hospitalized about 3 weeks ago for a "tune-up" of IV antibiotics and I was lucky enough to have cracked a rib from coughing either too hard or getting one "just right" to do the job. It's been a rough last few weeks but things could be worse. I do have to begin taking oxygen when I sleep, not so excited about that but nothing that hasn't been expected pretty much all my life.

Just going to keep going with the Orkambi and hope things work out. My FEV1 was down to 31% when I left the hospital but I'm hoping that was mostly due to not being able to give a full effort because of the cracked rib. It was at 35% when I was admitted so I'm not expecting that the antibiotics would've increased it to much more than 38% anyway. I read that one patient had a 14% increase while on Orkambi, but that was over a 2 year span, and I'm hoping I can somehow get anywhere close to that. Mid-40's is nothing to get all that excited about when it comes to the FEV1 but it beats the heck out of where I'm at now.
At least the Cubs are having a decent season.

 

[julie61554]

I am so sorry to hear that so many are having these bad side effects. I just began the Orkambi on August 20th so I am not far into it but I have only had the side effect of being short of breath. I don't feel it is anything I can't handle though as long as it improves within a couple weeks. My fev1 when I went to the clinic last had dropped slightly to 24%-it was at 31% in May right after being in hospital. My norm seems to run about 28% for the last couple years. So I am just praying that this medicine will help me to remain stable even if I don't seen an increase in FEV1....although an increase would be nice. For those of you having difficulties with the side effects, I will be praying for you all that things will imrpove very soon.

 

[Cubs fan Brian]

I'm right there with you, Julie. Not really expecting a huge improvement in my FEV1 but to be able to at least stay stable would work for me right now. I was diagnosed in 1968 and grew up hearing how I'd probably be fortunate to make it to my teen years, adulthood, etc. so I'd like to see just how far I can stretch this thing out.

Brian

 

[AH11201]

I'm on day 8 now, and thankfully things have gotten way better. The only side effect I have now is fatigue, but it comes and goes and I've still been able to get to the gym a bit. I've always been extremely lucky with my CF and it's never been too bad, so if the side effects dissipated so quickly for me, maybe that's a sign that they're on their way out (only more slowly) for others.

 

[julie61554]

I'm right there with you, Julie. Not really expecting a huge improvement in my FEV1 but to be able to at least stay stable would work for me right now. I was diagnosed in 1968 and grew up hearing how I'd probably be fortunate to make it to my teen years, adulthood, etc. so I'd like to see just how far I can stretch this thing out.

Brian

Brian, if you don't mind me asking how old were you when you were diagnosed? I was diagnosed when I was 7. I too grew up being told that I would be lucky to live into my teen years. I am now going on 48 all praise to God. My FEV1 has remained fairly stable over the last 15 years. It has been declining but a very slow decline. I was running about 33-35% 15 years ago. So if the Orakambi can help me just remain stable, I will be happy.

Julie

 

[desnot]

I've been taking Orkambi for just under a week now. I haven't had any side effects from the drug to this date.

From my own subjective self evaluation, so far I seem to be coughing less probably at about day 5 since taking the drug. I don't know whether to relate this to the drug, or other factors, but overall I feel an improvement. I have less congestion and less of a need to cough at this point.

 

[Cubs fan Brian]

Brian, if you don't mind me asking how old were you when you were diagnosed? I was diagnosed when I was 7. I too grew up being told that I would be lucky to live into my teen years. I am now going on 48 all praise to God. My FEV1 has remained fairly stable over the last 15 years. It has been declining but a very slow decline. I was running about 33-35% 15 years ago. So if the Orakambi can help me just remain stable, I will be happy.

Julie

I was diagnosed as an infant, Julie. They couldn't figure out what was wrong with me and an intern asked my mom if she could think of anything at all that was odd. She told him I tasted salty when she'd kiss my forehead and that triggered them to do the salt test and get the diagnosis that probably saved my life. I'm heading towards 48 now as well.

 

[trghpu1994]

Has anyone had a decrease of appetite while on Orkambi? Our daughter has hardley been eeating the last few days. She claims she isn't hungry which is odd. Shes been on it about a month. Fortunately her annual CF clinic visit is today. She may be stressed about school and having to repeat 8th grade.