Aboveallislove
Super Moderator
When I saw the packet with the punch out pills, I literally exhaled, whew...as I'm very clumpsy and have already foreseen me knocking the car, I mean bottle of pills in the drain!! Looking forward to your blog!
For people taking Orkambi
- Thread starter KellyAnneB
- Start date
All the packaging and the sales/support calls from Vertex drive me nuts from a 'at least make some attempt to cut the cost' point of view. Also the 28 day script makes me roll my eyes, only $$,$$$ with 7% fewer doses than you need for a proper month. That means I get to pay 13 co-pays a year instead of 12. I was horseback riding the other week and thought, with each dose costing the same as my monthly truck payment, there isn't much that these pills could land in that I wouldn't still pick it up, rinse it off, and take it.
I'm now 22 days into taking Orkambi and feel about the same as I did 2 months ago. I'm still tired, my cough is back to regular (which is fairly minimal) and I still get a little anxious/or depressed at times. If anything I might have a smidge more chest tightness than normal.
I'm now 22 days into taking Orkambi and feel about the same as I did 2 months ago. I'm still tired, my cough is back to regular (which is fairly minimal) and I still get a little anxious/or depressed at times. If anything I might have a smidge more chest tightness than normal.
saintoffeon
New member
Is feeling like two months ago better than feeling like when you started? In other words, is it a relative improvement? Like, two months ago was iffy, then things got worse, then you take this, and you're back up to the two months ago feeling? Or was 22 days ago better than two months ago and two months was just identical symptoms wise as a reference point?
saintoffeon
New member
Day 33
Might dial back to every other day or unless something notable happens. Not out of laziness or lack of commitment but because there's not a whole lot to report. I'm stable and it's a good stable and the level of wordy I am isn't really adding anything I think would be universally helpful.
Little bit of blood in the sputum today but no episodes and I over exerted myself twice so I kind of earned it, plus I did my pain stuff way early in the morning, almost the night before, which ended predictably for me trying to get awake and get my day started as described before.
No tolerance issues like I thought when I first started taking this though and still pretty much keeping to a consistent pair of lowest dose pills a day. Missed legit exercise but ran an errand and overate so much at dinner that it erased my memories of having lost my appetite early on. I made myself feel bad but I did get a slightly higher nighttime weight so there you go
Might dial back to every other day or unless something notable happens. Not out of laziness or lack of commitment but because there's not a whole lot to report. I'm stable and it's a good stable and the level of wordy I am isn't really adding anything I think would be universally helpful.
Little bit of blood in the sputum today but no episodes and I over exerted myself twice so I kind of earned it, plus I did my pain stuff way early in the morning, almost the night before, which ended predictably for me trying to get awake and get my day started as described before.
No tolerance issues like I thought when I first started taking this though and still pretty much keeping to a consistent pair of lowest dose pills a day. Missed legit exercise but ran an errand and overate so much at dinner that it erased my memories of having lost my appetite early on. I made myself feel bad but I did get a slightly higher nighttime weight so there you go
I'd call two months ago an 'average' state of health for me or maybe I could call it stable state of health. The week before I started I had a head cold (not bad enough to start antibiotics but getting close), then the first few days of Orkambi my cough was a little worse (but it was hard to tell if it was the cold clearing out, or if the Orkambi was helping to clear stuff out), and now I'm back to the 'average' for me. I was really hoping to get to 'better than average'. Maybe it will happen but I won't be holding my breath.
saintoffeon
New member
For what it's worth, ethan, it's definitely possible. I remember seeing so many articles on people on Kalydeco where it seemed almost unrealistic how well they were doing. Then Orkambi's numbers came in and they were lower, and then they stopped really even talking about lung function. Now it's reduced exacerbations, and reduced long-term hospital stays (I believe)...
So when I started taking it, I didn't have amazing expectations. Especially since the loudest voices were people PO'd and jaded because they didn't feel any different, or because the process of working out decades of crap brought about so many symptoms so quickly that they didn't want to or couldn't chance staying on it to find out if it ever got good.
So I didn't think anything about quality of life, more like my experience with Cayston...I didn't feel better, but my mucus was pretty much clear, so I knew I was doing a good thing for me and hoped I'd live longer because of it.
If you check my posting history, though, Orkambi started roughing me up within hours. Knocked me out to sleep, elephants on my chest, staggering everywhere when I could move at all...I even had something feel so bad and so similar to an embolism that I checked into ER (wound up being pleurisy)...and it just kept digging a hole, worse and worse. It was inopportune to say the least. I am running our business almost by myself right now, and we kept getting more work, and had important Chamber of Commerce events to attend...I knew I wanted to start the meds sooner rather than later, because you can't put it off forever, but I didn't know there was going to be such a doozy drop off that first step.
A few days before where you are right now, things reduced to mostly shortness of breath and some pain, but underneath it all, like not the back and not the chest, I felt less inflamed...lighter, more flexible, etc. It was weird because there was this slightly noticeable undercurrent of good feelings at the same exact time as my lungs were under siege.
Now I am at a month out, plus a few days, and I can't remember ever feeling this well (even when I was younger and could breathe better!)...it's not a phenomenon I'm hearing a lot about (though I do scope out Reddit and Twitter and see it sometimes) but it's night and day...so, yeah, maybe you're only ever this, and maybe it's a half year before you get better...maybe next week...just make sure you're doing what feels right to you, staying hopeful, and maximizing the opportunities provided by however good you feel to help it on its way. I basically was dragging myself around on my worst days to make sure I didn't leave anything on the table, and now I wouldn't trade this for the world.
I hope it kicks in for you as well, sooner rather than later if possible, but at the very least, I hope you stay happy and healthy in whatever decisions you choose to make, on or off it...
So when I started taking it, I didn't have amazing expectations. Especially since the loudest voices were people PO'd and jaded because they didn't feel any different, or because the process of working out decades of crap brought about so many symptoms so quickly that they didn't want to or couldn't chance staying on it to find out if it ever got good.
So I didn't think anything about quality of life, more like my experience with Cayston...I didn't feel better, but my mucus was pretty much clear, so I knew I was doing a good thing for me and hoped I'd live longer because of it.
If you check my posting history, though, Orkambi started roughing me up within hours. Knocked me out to sleep, elephants on my chest, staggering everywhere when I could move at all...I even had something feel so bad and so similar to an embolism that I checked into ER (wound up being pleurisy)...and it just kept digging a hole, worse and worse. It was inopportune to say the least. I am running our business almost by myself right now, and we kept getting more work, and had important Chamber of Commerce events to attend...I knew I wanted to start the meds sooner rather than later, because you can't put it off forever, but I didn't know there was going to be such a doozy drop off that first step.
A few days before where you are right now, things reduced to mostly shortness of breath and some pain, but underneath it all, like not the back and not the chest, I felt less inflamed...lighter, more flexible, etc. It was weird because there was this slightly noticeable undercurrent of good feelings at the same exact time as my lungs were under siege.
Now I am at a month out, plus a few days, and I can't remember ever feeling this well (even when I was younger and could breathe better!)...it's not a phenomenon I'm hearing a lot about (though I do scope out Reddit and Twitter and see it sometimes) but it's night and day...so, yeah, maybe you're only ever this, and maybe it's a half year before you get better...maybe next week...just make sure you're doing what feels right to you, staying hopeful, and maximizing the opportunities provided by however good you feel to help it on its way. I basically was dragging myself around on my worst days to make sure I didn't leave anything on the table, and now I wouldn't trade this for the world.
I hope it kicks in for you as well, sooner rather than later if possible, but at the very least, I hope you stay happy and healthy in whatever decisions you choose to make, on or off it...
mander31880
New member
I have been on Orkambi for right at a month. There's days where I feel okay and I can get my physical things care of with no problem. Haven't felt wonderful yet. I am going through a bout like I did the second week where I'm so short of breath, it's uncomfortable to do anything. I am coughing lots of stuff up, and doing treatments about 4 times a day. I get short relief until I do something else requiring minimal physical effort. Really praying that this SOB goes away soon. I live a very active lifestyle of working out and barrel racing. Last week I could do it, but not at the ease before Orkambi. Now I struggle feeding horses.
DjFunkyFife
New member
Well i'm officially on orkambi. As of two hours ago. Someone suggested a blog, so i started one, under my user name. And the blog title is just "Fife". Someone also asked if i'd link to it, but i dont know how. Sorry!
So i am going to put more detailed analysis in there, but i'll post here a little bit as well.
Again, two hours in, and nothing to report yet. I really wasnt that hungry this morning, kind of had to force myself to eat the necessary amount of food. I would probably chock that up to being nervous.
So i am going to put more detailed analysis in there, but i'll post here a little bit as well.
Again, two hours in, and nothing to report yet. I really wasnt that hungry this morning, kind of had to force myself to eat the necessary amount of food. I would probably chock that up to being nervous.
Here the link for Funky's Blog.....(just go to the blog, go up to the address bar, highlight the address and hit copy, come to your thread and paste!)
http://forum.cysticfibrosis.com/entries/455-Orkambi-preview
And for those who would like, there is a button at the bottom of each blog for you to subscribe.....just like posted threads.
http://forum.cysticfibrosis.com/entries/455-Orkambi-preview
And for those who would like, there is a button at the bottom of each blog for you to subscribe.....just like posted threads.
DjFunkyFife
New member
This is off the Orkambi subject, but can anybody tell me why my blog isnt listed as a member blog, and my blog post isnt listed in recent blog posts? i can see it in my profile, but nothing seems to show up in the regular member blogs section.
On the orkambi subject, 4 hours into my third dose and i dont have much to report... except some GI issues... Lose stools, kinda feels like i missed my enzymes. Some members said they wondered if Orkambi would decrease their dependence on enzymes. I was hoping for this as well, but my Doctor said that it actually makes your enzymes (and your acid medicine, like prilosec) release FASTER... which means an enzyme change (and acid reducer med change) is probably in store for me if that's whats happening to me. Does anybody know if what they told me is true?
Also, last night while doing my vest treatment with sodium chloride, my chest did hurt a little, felt a little tighter than normal, but that went away. I slept like i normally do as well.
On the orkambi subject, 4 hours into my third dose and i dont have much to report... except some GI issues... Lose stools, kinda feels like i missed my enzymes. Some members said they wondered if Orkambi would decrease their dependence on enzymes. I was hoping for this as well, but my Doctor said that it actually makes your enzymes (and your acid medicine, like prilosec) release FASTER... which means an enzyme change (and acid reducer med change) is probably in store for me if that's whats happening to me. Does anybody know if what they told me is true?
Also, last night while doing my vest treatment with sodium chloride, my chest did hurt a little, felt a little tighter than normal, but that went away. I slept like i normally do as well.
My doctor mentioned the affect of Orkambi on acid reflux meds but didn't mention any affect to enzymes but high acid can cause decrease enzyme effectiveness so I could see how they might be linked. I'm not on acid reducers, and maybe that is why the Orkambi hasn't had any real significant change in my digestion.
The reason these drugs might not do much for digestion, is that for many CF adults there is very significant damage and structural changes in the pancreas due to the enzyme duct blockages. These blockages meant the enzymes were just left stagnant in the pancreas causing damage to nearby tissues (not entirely unlike leaving sticky mucus in the lungs). But where we've had treatments to move mucus out of the lungs, we've only been able to replace enzymes as a form of pancreas 'treatment'. But with no real treatment to prevent the damage. If the CFTR drugs gets better and approved for kids, then hopefully the next generation of CF adults won't have any pancreas damage and may very well by less dependent on enzymes.
The problem of structural damage to the CF-affected organs is part of the reason why PFT increases shouldn't be the only metric when considering a treatment's effectiveness. A treatment that stops damage from happening is still a pretty big deal, but far harder to measure individually.
The reason these drugs might not do much for digestion, is that for many CF adults there is very significant damage and structural changes in the pancreas due to the enzyme duct blockages. These blockages meant the enzymes were just left stagnant in the pancreas causing damage to nearby tissues (not entirely unlike leaving sticky mucus in the lungs). But where we've had treatments to move mucus out of the lungs, we've only been able to replace enzymes as a form of pancreas 'treatment'. But with no real treatment to prevent the damage. If the CFTR drugs gets better and approved for kids, then hopefully the next generation of CF adults won't have any pancreas damage and may very well by less dependent on enzymes.
The problem of structural damage to the CF-affected organs is part of the reason why PFT increases shouldn't be the only metric when considering a treatment's effectiveness. A treatment that stops damage from happening is still a pretty big deal, but far harder to measure individually.
saintoffeon
New member
I said I'd dial back my posts unless I had something to report.
I plotted out a 5K at my local park and walked it yesterday. 54 minutes! In Sept 2011 I did just under 48, but I also had a ten percent better baseline lung function. Considering that I haven't trained for it specifically, I think with a dedicated effort I could close that six minutes inside a month or two.
This, Day 37, is in stark contrast to Day 10 where I had to recover from moving from my bedroom over to the couch in the living room.
I took a cue from http://runsickboyrun.blogspot.com/ and picked up some non-terrible decent-quality protein snack bars to help me keep some of the work I'm doing exercise-wise.
Like I said before, I wanna use the crap out of this window of opportunity so I never go back.
I plotted out a 5K at my local park and walked it yesterday. 54 minutes! In Sept 2011 I did just under 48, but I also had a ten percent better baseline lung function. Considering that I haven't trained for it specifically, I think with a dedicated effort I could close that six minutes inside a month or two.
This, Day 37, is in stark contrast to Day 10 where I had to recover from moving from my bedroom over to the couch in the living room.
I took a cue from http://runsickboyrun.blogspot.com/ and picked up some non-terrible decent-quality protein snack bars to help me keep some of the work I'm doing exercise-wise.
Like I said before, I wanna use the crap out of this window of opportunity so I never go back.
DjFunkyFife
New member
Well i'm on day 4 of Orkambi, and so far i really have nothing to report. I have written some things here in the blog: http://forum.cysticfibrosis.com/blogs/4792-Fife
The cliff notes of that blog post: No changes whatsoever besides a slightly upset stomach since Sunday. I'm dissappointed that i don't feel like i'm knocking on deaths door. Maybe i got a bad batch!!! (yes i know i'm only on day 4)
The cliff notes of that blog post: No changes whatsoever besides a slightly upset stomach since Sunday. I'm dissappointed that i don't feel like i'm knocking on deaths door. Maybe i got a bad batch!!! (yes i know i'm only on day 4)
saintoffeon
New member
I just double-checked my posting history, and Day 5 is when I went into the hospital.
I'd rather you be disappointed for other reasons rather than hurt or explode or get reamed...so I'll just generally say I hope you get what's best for you, and/or improves your hope/confidence =)
I'd rather you be disappointed for other reasons rather than hurt or explode or get reamed...so I'll just generally say I hope you get what's best for you, and/or improves your hope/confidence =)
DjFunkyFife
New member
I know, i wasnt being literal, and i genuinely feel bad for everyone who's had to go through tough effects from this drug. Hope no one takes offense from my comment. But in the big picture, if it takes a little bit of bad to bring about some good, i'm all for that.
saintoffeon
New member
I know you weren't being literal and I didn't take it that way. I took it as, boy, sure seems to kick some ass before it makes things better, so I can't wait for the ass kicking so I know I'm on schedule and have something to look forward to!
Hello All-
I am in the 6th week and was admitted again. I was on 2nd week of IVs when I started. I was having trouble clearing the upper lobes and not feeling well. I had a bronch yesterday and they got some stuff out. Actually the lidocain loosened up so much before the bronch took place I just started coughing everything up from the upper lobes. So weird but was told it was something that happens because the lidocain numbs the airway and opens it all up (or something like that).
My FEV 1 was 56% and now is 63% FVC is over 100% was 80s. the small airways are a tad worse at 19/20% and was mid 20s. They did the PFT at 5am, so I do not know how accurate because I was asleep. I might ask for another before I leave. Also, my xray this time was soooo clear compared to last month right before Orkambi. I am going to try to get a picture of the pictures.
Weight down significantly- 14 lbs since 9/11/15. But something interesting is that I found out I have C. Diff- they cultured because the diahrrea I have had. Do not know if its Orkambi or the meds... Just weird- never had it before.
Doc is making sure I am not growing something different then before and then we can determine the course i am on. If nothing new I think we will chalk it all up to Orkambi.
have a great week
I am in the 6th week and was admitted again. I was on 2nd week of IVs when I started. I was having trouble clearing the upper lobes and not feeling well. I had a bronch yesterday and they got some stuff out. Actually the lidocain loosened up so much before the bronch took place I just started coughing everything up from the upper lobes. So weird but was told it was something that happens because the lidocain numbs the airway and opens it all up (or something like that).
My FEV 1 was 56% and now is 63% FVC is over 100% was 80s. the small airways are a tad worse at 19/20% and was mid 20s. They did the PFT at 5am, so I do not know how accurate because I was asleep. I might ask for another before I leave. Also, my xray this time was soooo clear compared to last month right before Orkambi. I am going to try to get a picture of the pictures.
Weight down significantly- 14 lbs since 9/11/15. But something interesting is that I found out I have C. Diff- they cultured because the diahrrea I have had. Do not know if its Orkambi or the meds... Just weird- never had it before.
Doc is making sure I am not growing something different then before and then we can determine the course i am on. If nothing new I think we will chalk it all up to Orkambi.
have a great week
J
jamest
Guest
At this point I've been on the full dose Ork since the beginning of October(ish). This followed bad side effects upon starting in early September, which resolved when I went down to 1 pill a day, then tapered back up.
Finally seeing positive results: there is a lot less mucus in my lungs now. I am questioning whether clearance is useful or not anymore, because not much comes up. No weight/appetite changes though.
So those of you having side-effects problems, you could try dropping down to 1 pill a day until they go away, then tapering back up. I am glad I stuck with it.
Finally seeing positive results: there is a lot less mucus in my lungs now. I am questioning whether clearance is useful or not anymore, because not much comes up. No weight/appetite changes though.
So those of you having side-effects problems, you could try dropping down to 1 pill a day until they go away, then tapering back up. I am glad I stuck with it.
Aboveallislove
Super Moderator
jamest, Thanks so much. That is good to know. When you talk about the clearance, do you mean the vest etc? The reason I ask is that I'd say even if you aren't brining up anything keep doing. With young CFers there's nothing to bring up yet but it helps anyway to keep them healthy.
Re the tapering: Did you go back to 2 a day all the time or did you do 1x a day, then 2x a day every few days as you built up to steady state of 2x a day???Thanks!
Re the tapering: Did you go back to 2 a day all the time or did you do 1x a day, then 2x a day every few days as you built up to steady state of 2x a day???Thanks!