Open main menu ☰
HealingWell
Search Close Search
Health Conditions
Allergies Alzheimer's Disease Anxiety & Panic Disorders Arthritis Breast Cancer Chronic Illness Crohn's Disease Depression Diabetes
Fibromyalgia GERD & Acid Reflux Irritable Bowel Syndrome Lupus Lyme Disease Migraine Headache Multiple Sclerosis Prostate Cancer Ulcerative Colitis

View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders Bipolar Disorder Breast Cancer Chronic Pain Crohn's Disease Depression Diabetes Fibromyalgia GERD & Acid Reflux
Hepatitis Irritable Bowel Syndrome Lupus Lyme Disease Multiple Sclerosis Ostomies Prostate Cancer Rheumatoid Arthritis Ulcerative Colitis

View Forums A to Z »
Log In
Join Us
Close main menu ×
  • Home
  • Health Conditions
    • All Conditions
    • Allergies
    • Alzheimer's Disease
    • Anxiety & Panic Disorders
    • Arthritis
    • Breast Cancer
    • Chronic Illness
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Migraine Headache
    • Multiple Sclerosis
    • Prostate Cancer
    • Ulcerative Colitis
  • Support Forums
    • All Forums
    • Anxiety & Panic Disorders
    • Bipolar Disorder
    • Breast Cancer
    • Chronic Pain
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Hepatitis
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Multiple Sclerosis
    • Ostomies
    • Prostate Cancer
    • Rheumatoid Arthritis
    • Ulcerative Colitis
  • Log In
  • Join Us
Join Us
☰
Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

Delta F508

Support Forums
>
Cystic Fibrosis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
profile picture
Spencer
New Member
Joined : Nov 2015
Posts : 1
Posted 11/9/2015 9:37 AM (GMT -7)
My name is Spencer. I am 23 years old. I have the delta F508 mutation. I have had digestive issues my whole life. For awhile i thought it was just food allergies that i had that were causing it. So i cut out those foods. Which it did not help. Then after i graduated high school the issues were so bad that doctors could not figure it out. Then i ened up having my gallbladder and appendix removed because they made me very sick and ill. Which then helped for a short period. Then i started living in and out of the hospital. I was called a drug seeker. So then i Went to KU medical Center. They found out that i had chronic pancreatitis. So they did a genetic test which is when i found out the mutation I had. So They started me on medications to help and a nerve block which helped alot. I lost relationships and jobs because of this. It ruined my marriage which i am now divorced. Its hard to live still but not like it was. Just wish there was other ways to control it and medicine to help.
profile picture
Austin Witmer
New Member
Joined : Oct 2015
Posts : 4
Posted 11/10/2015 6:26 PM (GMT -7)
I have Cystic Fibrosis and my mutation is the Delta F508. I am on this new medicine called Orkambi and it is not meant to cure the mutation but it does reduce the symptoms. I have been on it for about a month now and I can already tell it is helping me. You might want to talk to your doctor about it if you have CF.
profile picture
Gemsi
Veteran Member
Joined : Feb 2007
Posts : 1050
Posted 11/13/2015 4:12 AM (GMT -7)
Hi Spencer,

As Austin said Orkambi is a new medication that's out that helps treat those with double df508. You should ask your doctors if you aren't on it already. Are you seen by a CF specialist team or a regular doctor. Not 100% sure how it works over there as medical care is a bit different but I know you do have specialist teams but they're usually long distances to travel unless you live in specific areas.

The main cf medications are :
Enzymes like creon or zenpep
Long term antibiotics -oral and nebulised
Short term antibiotics-ciprofloxacin, septrin or IV antibiotics
Pulmozyme nebulised
Vitamin supplements - mostly A,D,E and K
Hypertonic saline
Meds for acid reflux like omeprazole

Physiotherapy- most use the vest in the US but there is also acapella, PEP, Aerobika and Flutter.

It's hard keeping on top of treatments and trying to have a life, it must be harder when you've only just being diagnosed and quite scary. I think it will get better, easier to manage and also easier to manage relationships.

If you have any questions, do ask.

Gem
profile picture
Wiley Coyote
Regular Member
Joined : Jan 2015
Posts : 37
Posted 12/9/2015 2:55 PM (GMT -7)
As an aside, Orkambi does not help everyone, only about 40% of the people who take it. 40% have no real effect, and 20% (I was in that lucky group) were actually hurt by it.
profile picture
pianogirl
New Member
Joined : May 2016
Posts : 3
Posted 5/13/2016 2:39 PM (GMT -7)
Hello! Whenever I look up Orkambi it's always stressed you need to have both copies of the DeltaF508 mutation, but only have one and a 17171-ga mutation, which I guess means I can't take it. Does anyone know why though?
profile picture
pianogirl
New Member
Joined : May 2016
Posts : 3
Posted 5/13/2016 2:49 PM (GMT -7)
Also message to Spencer...probably won't see it as it's about a year late... take creon! Creon is bae. I take 1 creon 10,000 per 7 grams of fat, which seems to work for seem reason. So about 4-7 for meals and 2-3 for snacks. Have a feeling people may need to take more than this, the best way is to experiment and see which number is best for you. A higher dose of creon is probably best, I think 10,000 is relatively low. It took years of trial and error to get to this happy place of no cramps at all, unless I forget to take my pills. Now I take this magic number of creon I haven't had a single problem with my digestion and I'm exactly in the middle range of bmi. So it's totally possible, you've just got to stick with it.
✚ New Topic ✚ Reply




HealingWell

About Us  |   Advertise  |   Subscribe  |   Privacy & Disclaimer
Connect With Us
FacebookFacebook TwitterTwitter PinterestPinterest LinkedInLinkedIn
© 1997-2021 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.