Cubs fan Brian
New member
I've noticed that I haven't been eating as much but I think it's more because of the fatigue than anything else, for me anyway.
For people taking Orkambi
- Thread starter KellyAnneB
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trghpu1994
Guest
She seems as energetic as always. She seems to be sleeping better but that may not be orkambi related
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trghpu1994
Guest
And she didn't eat breakfast at all... Nor dinner last night
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trghpu1994
Guest
Her PFT was 89% today and all her vitals were normal. Dr wants us to monitor and let her know if it continues. Didn't think it was Orkambi related. Probably just being a 15 yr old girl.. unfortunately there isn't much they can do to treat that.
Aboveallislove
Super Moderator
How'd her PFTs compare?
I was thinking the same re the reaction...likely age and starting back at school...and as you said, no pill for that (if there we, I know my parents would have given me it, oh, was I a doozy!!) Hugs mom.
I was thinking the same re the reaction...likely age and starting back at school...and as you said, no pill for that (if there we, I know my parents would have given me it, oh, was I a doozy!!) Hugs mom.
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trghpu1994
Guest
last time was 83% so she is up. her all time best was 97 but hasn't hit 90 since then (that was last year). thanks just..keep..swimming...
Warning to the faint of heart...I'm gonna talk about poop. Has anyone else had constipation while on Orkambi? A bout of constipation isn't uncommon for me, but I'm wondering if it has to do with the drug since the timing is so spot on. The only think I can think is that maybe the Orkambi is making it so I don't need as many enzymes? But when I was at my CF center last the nutritionist told me it's a myth that too many enzymes cause constipation (although I've heard that from other sources, including past CF docs), so I'm not sure. The last few days (I'm on on day 12) the poop has been soft once it comes out (thanks to Miralax) but feels like a boulder while I'm trying to get it out. Has anyone experienced something similar?
Aboveallislove
Super Moderator
I can't give you personal experience, but I was going to suggest it is making your GI track work more properly and thus you don't need as many enzymes. I also wanted to say that our son's GI doctor who focuses on the CF kids (but I don't think is an CF specialist), but with DS who has lots of back-up issues they wanted to cut back on enzymes just 3 months ago because they thought that might be contributing to it, so I don't think it is a myth if it is coming from the GI...
When DS was a baby and had constipation issues, his doctor said "one's first response is to reduce enzymes; however, that's not the case". Went on to talk about meconium equivalent and the mucus, crud that can cause those types of issues and steps to resolve them -- miralax, mucomyst, go-lytely, gastrographin.... I believe he was referring to the extreme of not taking enzymes to get things moving again, but that would/could just cause a vicious cycle of blockage.
DS had more issues with looser stools --- not greasy, malabsorption or typical CF stools ---- when he started Orkambi, but I suspect it was cleaning out his innards.
DS had more issues with looser stools --- not greasy, malabsorption or typical CF stools ---- when he started Orkambi, but I suspect it was cleaning out his innards.
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wes2112
Guest
My daughter started on orakambi on 8/20, and its been a tough go, she said she felt the drug made some difference after the first dose, her ladt pft was 68, in early August, het pft today was down to 60....her all time low, she is 17. Since this 8/27, really been suffering with flu like symptoms, running nose bad cough, coughing up junk, not sleeping great, lost weight. Seems her side effects are worse than many others...and other with struggles?
wes2112, I am about to start week 5 of Orkambi and I, too, had a very hard time the first 2 1/2 weeks. Every day (even every hour) was different, each throwing a different side effect my way.. chest tightness, shortness of breath, fever, chills, hot flashes, nausea, stomach issues, extreme fatigue, trouble sleeping... all while coughing up a ton of junk. To get through it my doctor put me on prednisone and oral levaquin, and I made sure to do extra albuterol and chest PT the entire time to keep the junk moving. As awful as I felt though, I could tell almost the entire time that my lungs were becoming clearer. At about the 3 week mark most of the side effects had subsided and my lungs now feel clearer than they have in years! I haven't done PFTs since starting the drug so I don't know if they've changed at all, but I definitely feel better. If your daughter is feeling any good differences at all (and perhaps even if she isn't yet feeling anything good happening), I'd say hang in there and keep getting the junk out.. it will (hopefully) be worth it soon!
Aboveallislove
Super Moderator
Could you share what your pft was before and general status? It is so helpful to know if at a certain level/certain issues there will be more problems. So glad you were able to clear all that gunk.
My FEV1 is low but pretty stable at about 28%. I've undergone transplant evaluation but it's not necessary yet.. I am 30 years old, still work full time, don't require oxygen except during bad exacerbations, and can generally function pretty independently!
Cubs fan Brian
New member
I've got to say, that your story does give me a bit of hope, cjones. I'm 2 and a half weeks in on the Orkambi myself and it is still just kicking my butt. The fatigue and shortness of breath are what have been the worst for me. I haven't been able to go to my pulmonary rehab workouts because I'm just not strong enough to get there. My days have pretty much consisted of hanging out with my nebulizer and sleeping way more than usual. I haven't noticed that I'm coughing up more junk though, if anything I'd say it's less for me. I go in for PFT's on Friday and I'm really hoping I see some sort of progress. Actually, I'm hoping to just be able to remain stable at the 30% FEV1 which I was at on Aug. 7.
I'll keep my fingers crossed that I'm nearly finished with these side effects. Hate to say it but since I've been taking this drug, I've felt more like what I expected I'd feel like right before my story ends than how I'd feel once I began taking a drug that was supposed to be a positive game changer for me. My spirits are pretty low but hey, I've made it 47 years (diagnosed as an infant in 1968) I'm not about to give up now.
Brian
I'll keep my fingers crossed that I'm nearly finished with these side effects. Hate to say it but since I've been taking this drug, I've felt more like what I expected I'd feel like right before my story ends than how I'd feel once I began taking a drug that was supposed to be a positive game changer for me. My spirits are pretty low but hey, I've made it 47 years (diagnosed as an infant in 1968) I'm not about to give up now.
Brian
Katalinrogers
New member
My 25 yr old daughter has been on it for six weeks now. The initial chest tightness went away after about a week. From time to time she has a little bit of nausea - remember you need to take Orkambi with fat and some people need more fat intake than just a glass of full milk- however it is not severe and dissipates after about 10 minutes. Otherwise she does not feel any different than before taking the Orkambi. Her mucus production is about the same as well. Who knows if it works?
Brian, I felt the same way toward the end of those 2 1/2 weeks.. absolutely no energy and super weak. I had been trying to work at home (I'm a computer programmer) throughout all of that and I was so out of it, I was confused and unfocused and ended up taking time off. I will say though that more than anything else, my lack of energy and weakness was a result of not being able to eat because of the nausea. I started taking zofran and once I started eating again I got back enough energy to continue coughing stuff out, and everything started to get better. Hang in there, and don't be discouraged if you don't see what you want from your PFTs this week. I don't even want to think about what my results would have been had I done PFTs during those first couple of weeks. I'm actually going tomorrow and even now that I'm feeling better, I'm going to try not to get upset if my numbers don't reflect that. I'm just hoping that I will continue to feel good and if my numbers go up at all, that will just be an added bonus!
Fingers crossed that you start to feel good very soon!!
Fingers crossed that you start to feel good very soon!!
imported_Momto2
New member
I just finished week 3, and I think I am finally back to base-line lung-wise. Still SOB about an hour after I take the Orkambi, but that goes away after an hour or so. Still having some nausea, intermittent diarreah, fatigue, and rhinitis. The fevers are not going as high now, but there are some low-grade temps here and there. Stomach pain is better, flatulence is.....umm WOW. Who knew you could sustain a fart for a solid 14 seconds? (oh, for a match!!!) I laughed so hard I almost passed out from lack of oxygen. My daughters were disgusted, my husband amazed. What I am still waiting for is the feeling that my lungs are improving, but I havent gotten there yet. Not coughing up anything out of the ordinary, and not coughing more, so I'm not really sure if its doing anything? I'm keeping a very close eye on my oxygen sats and my FEV1 with the handheld monitor. It would be nice to see those numbers increase. I also wouldnt mind the fatigue to go away................. This past week I've started having more dizziness, not sure what that's all about.
Brian, know that there are others in this boat with you, suffering as well. Together we float. *hug* This is a long-term war, dont lose sight of that!!!!!!!
What I am still waiting for is the feeling that my lungs are improving, but I havent gotten there yet. Not coughing up anything out of the ordinary, and not coughing more, so I'm not really sure if its doing anything? I'm keeping a very close eye on my oxygen sats and my FEV1 with the handheld monitor. It would be nice to see those numbers increase. I also wouldnt mind the fatigue to go away................. This past week I've started having more dizziness, not sure what that's all about.Brian, know that there are others in this boat with you, suffering as well. Together we float. *hug* This is a long-term war, dont lose sight of that!!!!!!!
saintoffeon
New member
flatulence is.....umm WOW. Who knew you could sustain a fart for a solid 14 seconds? (oh, for a match!!!) I laughed so hard I almost passed out from lack of oxygen. My daughters were disgusted, my husband amazed.
That's the next thing we can do to raise awareness. Remember the dogs singing jingle bells? We'll just set your farts to music and have the CF Foundation sell it on iTunes as a single called 65 Blowses.
Cubs fan Brian
New member
I'm feeling closer to "normal" today than I have since I began taking Orkambi one day shy of 3 weeks ago. Still need to take things slowly but haven't had the constant shortness of breath and fatigue nearly as badly today. Fingers crossed that it stays like this for tomorrow when I have my PFT's.
Aboveallislove
Super Moderator
Brian,
So glad you're feeling closer to normal and hope PFTs go well tomorrow. Please do post.
Also, with all the he!! week stories, I was thinking...having Orcambi now and then the next generation drugs a few years down will the road will make it more tolerable...can you imagine getting hit with something that doubles the fix of the CFTR given how hard Orcambi hits! Obviously it will be great to have that improvement and we wouldn't turn it down if it were here now, but in a way it is probably easier on some to have it come in stages.
So glad you're feeling closer to normal and hope PFTs go well tomorrow. Please do post.
Also, with all the he!! week stories, I was thinking...having Orcambi now and then the next generation drugs a few years down will the road will make it more tolerable...can you imagine getting hit with something that doubles the fix of the CFTR given how hard Orcambi hits! Obviously it will be great to have that improvement and we wouldn't turn it down if it were here now, but in a way it is probably easier on some to have it come in stages.