Fish oil
Do you take? What brand do you take? I do give fish oil daily to my daughter. In the past I had bought Nordic Naturals. last time I just got what was at the drug store. Thinking of going back to Nordic Naturals...What types do you use? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 21, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Adults Source Type: forums

Qvar 1 or 2 a day?
So DS doctor wants to up his qvar or rather has. She gave us the choice of a higher dose 1 a day or same dose 2 a day. I asked adv and disadvantages and whether better to do 2 a day which seems intuitively like t would be better but she said it s no different. Bu what I wonder is is that a clinical test no different like the albuterol inhaler versus nebulizers which studies show no different but cfers in practice will say the nebulized version works better? Or is it truly no different? We've been doing 2 a day because I have the meds left but in the evening DS is already exhausted and bouncing off the walls as am I so ...
Source: Cystic Fibrosis Adults Forum - October 20, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

IV ball options?
Hi, I was just curious, are there any of those IV balls (eclipse?) available for PA medicines? Specifically meropenem? Just wondering for next time I need IV's. I'd really like to be able to work during the day next time without much interruption, so I'm hoping there are options for the portable IV meds rather than the standard IV bag/pole. Thanks! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 20, 2015 Category: Respiratory Medicine Authors: rubyroselee Tags: Adults Source Type: forums

Depression CF related
Hi. Just wondering how many of you or your loved ones with CF suffer from any form of depression. Years ago, I was prescribed Paxil by my CF Clinic doctor after breaking down in tears during one of my early visits. Later after seeing a mental health professional, I was described Adderall, after they diagnosed me as being ADD. They also gave me Xanax to sleep, and I was on this roller coaster of ups and downs for years, until I quit everything on my own. I still suffer from bouts of depression and it obviously affects my willingness to adhere to treatments and take car of myself, in general. Any, Do you any of you suffer a...
Source: Cystic Fibrosis Adults Forum - October 16, 2015 Category: Respiratory Medicine Authors: Rlawyer Tags: Adults Source Type: forums

Instagram
Hi, I'm new here! I love connecting with CFrs on Instagram and was wondering if anyone would want to share their username and connect with me. Mine's Chelles_xoxo (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 16, 2015 Category: Respiratory Medicine Authors: chelles07 Tags: Adults Source Type: forums

New Orleans Adult CF Center
I just recently moved to Ocean Springs, Mississippi and the closest CF center in to me is the one in New Orleans. Can anyone tell me about this center? What's the doctor like? What in patient is like also? What are the nurses like in the hospital and in clinic? If anyone could let me know anything about that center that would be so nice. Also is there anyone on here who lives in or near Ocean Springs, Mississippi? I'm new to this site so I hope I did this write. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 16, 2015 Category: Respiratory Medicine Authors: leothelioness34 Tags: Adults Source Type: forums

Mrsa
My son is 17...dd508...fev 110%...colonized with MRSA...first dx with it in 2012. He would do a round of lenezolid and not culture for 6 months or so and then BAM! out of nowhere. Unfortunately, we have been plagued with this...mess! He has not had a MRSA negative culture since the end of 2014. Now the drugs are not working as well as they previously did and he is flaring up more often. I am VERY interested in any alternative/holistic approaches to controlling this. Any ideas are appeciated. Thanks (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 15, 2015 Category: Respiratory Medicine Authors: MamaHollie Tags: Adults Source Type: forums

Nasonex on back order?
I went to the pharmacy to refill my daughter's Nasonex and it is on back order until December. Wondering what you all use besides Nasonex for nasal polyps? She does her Nasonex 2 squirts once a day. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 15, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Adults Source Type: forums

More next generation correctors coming
Another company, Galapagos, is moving forward with a second generation one. Slide 11 for Vertex shows 4x improvement over the combo (661/Kalydeco), while this in vitro shows a 6x improvement over Orcambi (which has equivalent cftr improvement to 661/kalydeco). So many things coming! http://seekingalpha.com/news/2831876...mbi#email_link (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 15, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums

Good news
My doc gave me the green light to think about pregnancy! She says my FEV1 is great and there is no reason why I couldn't have kids. Don't know if that is indeed in my future but I feel so relieved/joyful/NORMAL! Here's to joyous days, all!!!! (L)(L)(L) (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 15, 2015 Category: Respiratory Medicine Authors: welshwitch Tags: Adults Source Type: forums

New Site Coming Soon
Hi my friends! As I was reading through the threads this morning (my initial activity for the last 20 years!) I came across CFinTX question and I thought this would be a good time to reply to his question about the Pyrtze email sent out so here goes: Great Question CFinTX! Back in 1996 when I bought the domain: CysticFibrosis.com and (my partner had CF), I imagined a center for everything CF. That would include patients, caregivers, family members, partners, HCPs and Industry Leaders. We started with pretty simple message boards. The threads were entitled Patients and Families. In 2003, we got ...
Source: Cystic Fibrosis Adults Forum - October 13, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Adults Source Type: forums

DIOS prevention options
Hi everyone, I've been struggling with intermittent DIOS now for several years. Previously I was using a cap of Miralax daily as a preventative. However, ever since I was treated with IVs over the summer, my bowels have not been the same. Now I cannot tolerate Miralax at all - I get severe gas and bloating with frequent BMs. Is there any alternative to Miralax for DIOS prevention? Thanks (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 13, 2015 Category: Respiratory Medicine Authors: rubyroselee Tags: Adults Source Type: forums

Anxiety on Orkambi?
Hello all- I was wondering if anyone else on an anti-depressant or anxiety medication is experiencing anxiety or mood cycling on Orkambi? I am prescribed 10mg of escilatopram (Lexapro) for generalized anxiety, and have not had issues for years. However, I noticed within the first week that I have had extreme issues with anxiety attacks, constantly feeling nervous or jittery, and mood swings. I understand that there is a moderate interaction there, but it almost feels as if I went 'cold turkey' off my meds, and I even experienced minor brain zaps one morning. I tried doubling my dosage for one week (taking 1 20mg pill ...
Source: Cystic Fibrosis Adults Forum - October 13, 2015 Category: Respiratory Medicine Authors: sheanna Tags: Adults Source Type: forums

has the system been down????
I have not seen a new email post in weeks was the system down? Also I went to 4 different sites before I found my friends... I was starting to panic Will now log on to adults to see what I have missed... (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 13, 2015 Category: Respiratory Medicine Authors: windex125 Tags: Adults Source Type: forums

Pertzye?
I got an email today from CysticFibrosis.com promoting this drug but I have never heard anything about it. Anybody on it or heard of it that can share more? Looks to be maybe an alternative for enzymes. I'm currently on Creon's but don't know if this would be considered an equivalent or an additive. http://www.pertzyecf.com/ Also, unrelated, this is the first time I've gotten an email like that from CF.com - do they typically promote drugs like this or is this just a new marketing tool they're trying to take advantage of? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 13, 2015 Category: Respiratory Medicine Authors: CF in TX Tags: Adults Source Type: forums