Orkambi and M Abscessus
Was anybody out there on the trial who had m. abscessus? Did it help move it out? Ideas? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 14, 2015 Category: Respiratory Medicine Authors: ccsalema Tags: Adults Source Type: forums
Weight
Hey
Over one year i have lost 10 kilos (22 lbs)
And about 30-40% of. Lung function.
Earlier this year i was diagnosed with cfrd and my cf doctors expected an incline in both lungfunction and weight gain because now im gonna be treated with insulin.
They basically thought the weight loss and lungfunction loss was caused by the cfrd.
That was back in may. When i started the insulin
Its now august, and i havent gained any weight or lungfunction.
In fact i lost a lil bit more weight and about 2-4% lungfunction.
So its definitly not getting better as expected.
Idk how, or why
Have any of you expierence with cfrd?
And g...
Source: Cystic Fibrosis Adults Forum - August 13, 2015 Category: Respiratory Medicine Authors: Rickengelage Tags: Adults Source Type: forums
other inhaled antibiotics?
Hi there,
Just wondering if there's anyone out there on any inhaled antibiotics other than Cayston, tobramycin/Tobi, or Colistin? I've seen some things online that there may be ceftazidime or amikacin available in the inhaled form? Just wondering if that's true and/or if anyone has ever been on it.
Thanks! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 12, 2015 Category: Respiratory Medicine Authors: rubyroselee Tags: Adults Source Type: forums
Having trouble with CF services Grrrrrrrr
Is it just me with trying to fill my Meds with CF services It is such a daunting process with Hold on and then transfering then hold on 20 minutes yesterday 20 today grrrrrrrr. I wonder is it just me being placed on hold every time or is others having the same thing happen? I just feel like i need to spend so much time just to fill my Script each month I just have to vent my feeling in the past it went so much better but lately I just wish i had another choice. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 11, 2015 Category: Respiratory Medicine Authors: kgfrompa Tags: Adults Source Type: forums
Calorie Needs for CFers
Hey everyone,
So a big topic when it comes to CF is eating and how to put on that weight. I have a CF youtube channel and have been emailed several times by people asking how I have been able to put on weight and what type of things do I eat. Just to sum things up I'm 25 years old, male, have luckily put on 30 lbs in the past year, and have 40% lung function. I just recently got together with my dietician and came up with 2 "CF Calorie Needs" equations to help CFers eat the right amount of calories each day. If you are interested, you can view the video here: https://youtu.be/QyTOGaHoiyM
Good Luck and Keep Fig...
Source: Cystic Fibrosis Adults Forum - August 8, 2015 Category: Respiratory Medicine Authors: TheSaltyOne Tags: Adults Source Type: forums
ABPA and Xolair
Hi folks,
Does anyone have issues with Allergic bronchopulmonary aspergillosis (ABPA) ? Do you do anything for it, any luck with treatment?
I just got off Prednisone after being on it for the past 20 months. At the start of 2014 I had a CF-related decline in PFT that I was unable to really bounce back from after 3 weeks of IV antibiotics. They noticed my IGE level was over 6000 (normal is around 100 I believe), and had been for several months. They tried prednisone and voriconizole (one of the only anti-fungal medications, I've been told) but my IGE only dropped to around 1500-1000.
Next the docs sent me over to alle...
Source: Cystic Fibrosis Adults Forum - August 8, 2015 Category: Respiratory Medicine Authors: Dank Tags: Adults Source Type: forums
Treatment for the mildly diseased
I've got my clinic visit coming up next week and am conflicted about starting Orkambi. I don't love the price (even though I won't bear the brunt of the price, I don't love making my self-insured employer pay), I'm nervous about possible side effects especially those involving the liver, and am little disappointed that it doesn't seem to be as effective as Kalydeco. My lung disease has been somewhat mild. I only do Tobi 2-3 months of the year usually during flare up in the winter, I've yet to be hospitalized for a pulmonary exacerbation, I cough and produce but it is rare for it to be any sort of disruptive. I'm still at t...
Source: Cystic Fibrosis Adults Forum - August 7, 2015 Category: Respiratory Medicine Authors: ethan508 Tags: Adults Source Type: forums
CF sweetness...and then scariness!
As DS, who is 6, was finishing up his lunch I was working on sterilizing his nebs. He was watching and said "when I'm older I'll do a good job cleaning my nebulizers" and I said "I'm sure you will" and then we discussed the process. He then volunteered: "And I know what I'll do after I'm done?" I said what, to which he responded: "I'll go play with my children." I was nearly in tears over the sweetness until he added, "but I'll need a few things, some blue tape to tape them to the chair if they are naughty." YIKES! Well at least it was "blue tape" which is...
Source: Cystic Fibrosis Adults Forum - August 6, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
For people taking Orkambi
Since I started the drug on July 31 I've been having constant night sweats and high blood pressure. As well as fatigue. Has anyone else had similar symptoms? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 4, 2015 Category: Respiratory Medicine Authors: KellyAnneB Tags: Adults Source Type: forums
Canadian Health Care System
I may be opening up a can of worms, but I wanted to know if there were any Canadians out there and how you feel about your healthcare system? Are you happy? Do you feel your quality of CF care is good? Do you have easy access to hypertonic saline, pulmozyme, Tobi, all the CF drugs? Are you able to see your pulmonologist when you need to? With all the debates going on right now in the states, I want to know how Canadians truly feel about their healthcare system. If you are in the U.S., how do you feel about moving to a single-payer system? Thank you,
rosesixtyfive,
mother of Sam (ddf508) (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 2, 2015 Category: Respiratory Medicine Authors: rosesixtyfive Tags: Adults Source Type: forums
Embarrassing questions about sex
I know I can ask my doctor this but I am a little embarrassed to ask so I thought I would try here first. I have done searches but cannot find the answer to this questions....is it safe to give oral sex to my girlfriend or can it cause me to get sick? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 2, 2015 Category: Respiratory Medicine Authors: knottstreet Tags: Adults Source Type: forums
Weekly pill container
Nothing says it's the end of the week like an empty pill container! Is it just me or does time just fly by? It seems like I just filled my meds a few days ago. How many of you have weekly storage or do you just take them straight from the bottle? I never had a weekly container until after my transplant. It's highly recommend so you don't forget to take your very important anti-rejection meds everyday. I think it's a good way to teach the young ones about their meds. Thoughts? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 30, 2015 Category: Respiratory Medicine Authors: beautifulsoul Tags: Adults Source Type: forums
so frustrated...major drop in lung function so fast
Has this happened to anyone else? I was always quite healthy with CF..the occasional exacerbation, but oral antibiotics took care of it. FEV always around 60-70. Then, two months ago, I got pretty sick. Fevers, the whole bit. The fevers and chills went away after two weeks of IV antibiotics, but now I still feel like crap (lung wise)! I never really did feel better. My lung function went down to 34% and is staying there. I was put on prednisone for 16 days. That is done now, and it did nothing. I started symbicort at the time I started prednisone too, and I'm still on that. I went in today and the lung function only went u...
Source: Cystic Fibrosis Adults Forum - July 30, 2015 Category: Respiratory Medicine Authors: sasha Tags: Adults Source Type: forums
Vertex updates
Vertex had an earnings call yesterday and here is the transcript. The Q&A at page 3 has the most interesting stuff. This is a call with investors, though, so trigger warning--it's talking about the $. But I always find interesting tidbits on what's going on. The studies with Parion (sp?) sound promising and also that 3-4 next generation correctors will be in clinic in the next year.
http://seekingalpha.com/article/3372...p=qanda&l=last (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 30, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
661 study initiated for heterozygotes
http://finance.yahoo.com/news/vertex...200100167.html
vertex just announced initiation of the 661 trial for those with one copy of df508 and another gene not believed to benefit from kalydeco. When I get a chance I'll try to pull clinicaltrials link. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 29, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
