- Cystic fibrosis (CF) is a genetic disorder that affects the lungs, pancreas, and other organs, leading to severe respiratory and digestive problems.
- 162,428 people are living with CF around the world.
- 105,352 (65%) have been diagnosed
- 57,076 individuals undiagnosed (Summary by Perplexity AI - March 2024)
- Oral vitamin D helps cystic fibrosis - meta-analysis Jan 2024
- CF treated by Vitamins D, A, C, E, and zinc, omega-3 (DHA), garlic, ginseng and curcumin - Mercola May 2024
- Some CF studies in VitaminDWiki
- Cystic Fibrosis articles in VitaminDWiki
- Cystic Fibrosis treatment Trikafta costs $300,000/year - March 2024
- See also web
- Google Scholar had 354 studies with CF and Vitamin D in their title as of March 2024
- See also WikiPedia
- UK Cystic Fibrosis recommendations to be released in 2017
- Average annual cost of CF = $16,000 (March 2013)
- Role of vitamin D on gut microbiota in cystic fibrosis - 2018
- CF results in pancreatic insufficiency-induced malabsorption - which reduces the response to standard Vitamin D - Jan 2021
- Associated with categories: Intervention - any 7, Breathing 5, Intervention - non daily 3, Magnesium 3, Genetics 3, Diabetes 2, Hypertension 2, Vit D Binding Protein 2, Tuberculosis 2, Virus 2 (May 2024)
Oral vitamin D helps cystic fibrosis - meta-analysis Jan 2024
Vitamin D deficiency in patients with cystic fibrosis: a systematic review and meta-analysis
Journal of Health, Population and Nutrition https://doi.org/10.1186/s41043-024-00499-2
Nazanin Farahbakhsh, Somaye Fatahi, Armin Shirvani, Monireh Sadat Motaharifard, Masoumeh Mohkam, Seyed Ahmad Tabatabaii, Ghamartaj khanbabaee, Shirin Yaghoobpoor, Seyedeh Zahra Davoodi & Amir hossein Hosseini
WMD = Weighted Mean Difference
Aim
Vitamin D is a prominent modulator of immunity and respiratory function. It plays a vital role in respiratory diseases such as cystic fibrosis (CF). S. However, there is a dearth of information on patients with CF. The purpose of the meta-analysis is to highlight the importance of following the existing guidelines regarding maintenance of Vitamin D serum levels in patients with CF.
Methods
The systematic search was conducted without utilizing any time or language limitations in original database from the beginning until March 2022. The meta-analysis was performed using a random-effects model. Heterogeneity was determined by I2 statistics and Cochrane Q test.
Results
Pooled analysis using the random-effects model of the 8 case–control studies with 13 effect sizes revealed that the serum 25-OH-vitamin D in participants with cystic fibrosis was significantly lower than controls in pediatrics and adolescences (WMD: − 3.41 ng/ml, 95% CI − 5.02, − 1.80, p = < 0.001) and adults (WMD: − 2.60 ng/ml, 95% CI − 4.32, − 0.89, p = 0.003). Based on data from 12 studies (21 effect sizes) with a total of 1622 participants, the prevalence of vitamin D levels of 20–30 ng/ml in CF patients was 36% among pediatrics/adolescents and 63% among adults. In addition, 27% of pediatric/adolescent CF patients and 35% of adult CF patients had vitamin D levels of below 20 ng/ml.
Conclusions
As a result, according to the existing guidelines, our results proved the need to pay attention to the level of vitamin D in these patients.
Download the PDF from VitaminDWiki
CF treated by Vitamins D, A, C, E, and zinc, omega-3 (DHA), garlic, ginseng and curcumin - Mercola May 2024
- "Vitamin D deficiency is notably prevalent among CF patients, affecting their lung function and overall disease progression; maintaining a vitamin D level of at least 60 ng/mL is recommended for mitigating these effects"
Download the PDF from VitaminDWiki
Some CF studies in VitaminDWiki
- Cystic Fibrosis patients have low vitamin D (need different dosing) – meta-analysis Jan 2024
- Cystic Fibrosis appears associated with poor Vitamin D genes (radioactive tracing) – May 2023
- Poor or no response to vitamin D was associated with poor genes (cystic fibrosis, 4 genes) Sept 2022
- Cystic Fibrosis is safely treated by high-dose Vitamin D – Sept 2019
- Cystic Fibrosis patients need different forms of Vitamin D – Nov 2021
- Cystic Fibrosis probably treated by Vitamin D (if use enough of the right type ) – Oct 2019
- Cystic Fibrosis helped in many ways by Vitamin K – July 2019
- Cystic Fibrosis vitamin D recommendations are not enough - Dec 2021
- Half of Cystic Fibrosis patients have low Magnesium levels – April 2022
- Powder-based Vitamin D may be gut-friendly (Cystic Fibrosis) – RCT Aug 2017
- Inhaled Vitamin D looks like a possibility for CF - VitaminDWiki
Cystic Fibrosis articles in VitaminDWiki
- wiki page:
- Water-soluble form of vitamins are needed for some health problems
- Cystic Fibrosis patients have low vitamin D (need different dosing) – meta-analysis Jan 2024
- Cystic Fibrosis appears associated with poor Vitamin D genes (radioactive tracing) – May 2023
- Vitamin D non-responders may have one or more poor genes: GC, LIPC, CYP24A1, and PDE3B – Oct 2022
- Vitamin D energizes the innate and adaptive immune systems to fight lung inflammation – Sept 2022
- Cystic Fibrosis is associated with low Magnesium, supplementation would probably help -review 2016
- Poor or no response to vitamin D was associated with poor genes (cystic fibrosis, 4 genes) Sept 2022
- Half of Cystic Fibrosis patients have low Magnesium levels – April 2022
- Cystic Fibrosis vitamin D recommendations are not enough - Dec 2021
- Cystic Fibrosis patients need different forms of Vitamin D – Nov 2021
- 26 health factors increase the risk of COVID-19 – all are proxies for low vitamin D
- Cystic Fibrosis is safely treated by high-dose Vitamin D – Sept 2019
- Respiratory Disease exacerbations (Asthma, CF, COPD) may be treated by Vitamin D – July 2019
- Cystic Fibrosis and Vitamin D review with 2012 Guidelines - Nov 2019
- Cystic Fibrosis probably treated by Vitamin D (if use enough of the right type ) – Oct 2019
- Cystic Fibrosis guidelines for Australia include Vitamin D – June 2019
- Cystic Fibrosis helped in many ways by Vitamin K – July 2019
- Cystic Fibrosis not helped by 50,000 IU of Vitamin D taken twice a month – RCT Feb 2019
- Vitamin D dose size should increase with body weight (Cystic Fibrosis in this case) – Nov 2018
- Vitamin D has been recommended for Cystic Fibrosis – a small dose helps a little – Aug 2018
- Many Ashkenazi Jewish diseases associated with low vitamin D or poor Vit D genes
- Low vitamin D while Cystic Fibrosis is active – July 2018
- If vitamin D levels are less than 40 ng some children get cystic fibrosis – March 2018
- Powder-based Vitamin D may be gut-friendly (Cystic Fibrosis) – RCT Aug 2017
- Cystic Fibrosis got some benefit from 50,000 IU of vitamin D weekly (need gut-friendly form) – Feb 2018
- Vitamin D changed microbiota in gut and airway, might reduce cystic fibrosis – RCT Nov 2017
- Cystic Fibrosis may be related to low Vitamin D – Aug 2017
- Cystic Fibrosis RCT to use 250,000 IU of vitamin D – June 2017
- Cystic Fibrosis exacerbation reduced by Vitamin D (250,000 IU) – RCT May 2017
- Vitamin D in respiratory diseases – Spring 2017
- Cystic fibrosis treatment by vitamin D improved quality of life and breathing (8200 IU daily)– RCT Dec 2016
- MAGNESIUM IN MAN - IMPLICATIONS FOR HEALTH AND DISEASE – review 2015
- Lungs with cystic fibrosis fail to activate vitamin D (poor CYP27B) – Feb 2016
- Cystic fibrosis problems cut in half by Omega-3 – RCT June 2015
- 50,000 IU of vitamin D weekly (D3 or D2) got two thirds of cystic fibrosis patients to 30 nanograms – RCT July 2015
- Single dose (up to 60,000 IU) vitamin D raised levels in 87 percent of Cystic fibrosis patients – RCT March 2013
- Cystic Fibrosis Foundation recommends vitamin D dose, patients are taking even more – March 2015
- Cystic Fibrosis
- New Vitamin D Guidelines for Cystic Fibrosis Patients – Aug 2012
- 3800 IU of vitamin D is not enough for most children with cystic fibrosis – Aug 2012
- Cystic fibrosis helped with single dose of 250,000 IU of vitamin D – RCT July 2012
- Death due to cystic fibrosis reduced about 4X due to 250000 IU of vitamin D – RCT June 2012
- Vitamin D and the Lung – professional book 2012
- Cystic fibrosis associated with low vitamin D – May 2012
- Cystic fibrosis not statistically helped by 1600 IU of vitamin D – Cochrane Review 2012
- Might use Vitamin D for cystic fibrosis and topically on skin – June 2011
- People with Cystic Fibrosis should have more than 35 ng of vitamin D – March 2011
- Cystic Fibrosis - vitamin D level in blood varies with UV – Jan 2011
- Increased vitamin D supplementation decreased cystic fibrosis – Sept 2010
- Vitamin D deficiency in cystic fibrosis - Jan 2010
Cystic Fibrosis treatment Trikafta costs $300,000/year - March 2024
THE CYSTIC-FIBROSIS BREAKTHROUGH THAT CHANGED EVERYTHING -The Atlantic
Can live to age 82 with the tripple drug.
Click here for the many side effects of Trikafta
See also web
- Vitamin D supplementation in patients with cystic fibrosis:
- A systematic review and meta-analysis - Dec 2020 PDF
- Mortality. 2 trials studed CF deaths in the 12-month follow-up: 1 intervention, 5 placebo; p=0.03
- Meta-analysis said Vitamin D did not consistently help - mainly because trials had different outcome measures (other than death)
- Costly Vertex Drug Is Denied, and Medicaid Patients Sue July 2014
- Kalydeco, for cystic fibrosis costs $300,000 per year;
- average lung function improvement of 10.1% after about 11 months, compared with a decline of 0.4% in patients taking placebo….”
- Note by VitaminDWiki - Vitamin D appears to provide a much better improvement and is 30,000 X less expensive
- CF trial to use 250,000 IU bolus dose of vitamin D July 2017
To be followed by maintenance dose of 50,000 IU Vitamin D every 2 weeks
Download the PDF from VitaminDWiki - Patient Voices: Cystic Fibrosis New York Times Oct 2017
Four CF youths are profiled
Two are running, one is surfing,
One stays indoors and takes 50 pills per day
Another hint that Vitamin D helps (not mentioned by the article)
Google Scholar had 354 studies with CF and Vitamin D in their title as of March 2024
- Vitamin D and Prebiotics for Intestinal Health in Cystic Fibrosis: Rationale and design for a randomized, placebo-controlled, double-blind, 2 × 2 trial of administration of prebiotics and cholecalciferol (vitamin D3) (Pre-D Trial) in adults with cystic fibrosis - Jan 2024 FREE pre-print PDF
- pre-biotic and 50,000 IU of Vitamin D weekly
- Safety and efficacy of a new supplementation protocol in patients with cystic fibrosis and vitamin D deficiency - April 2023 FREE PDF
- Up to 8,000 IU of vitamin D did not get CF patients to 30 ng
- Vitamin D supplementation in patients with cystic fibrosis: A systematic review and meta-analysis - Sep 2021, https://doi.org/10.1016/j.jcf.2020.12.008 FREE PDF
- Systematic review and meta-analysis: Associations of vitamin D with pulmonary function in children and young people with cystic fibrosis April 2023, https://doi.org/10.1016/j.clnesp.2023.02.006 FREE PDF
- METABOLISM AND PHARMACOKINETICS OF VITAMIN D in PATIENTS with Cystic Fibrosis - May 2023 https://doi.org/10.1016/j.jsbmb.2023.106332 PDF behind paywall
- Development and Evaluation of a Pharmacist-Driven Vitamin D Protocol for a Cystic Fibrosis Clinic - 2022 FREE PDF
- A Clinician’s guide to vitamin D supplementation for patients with cystic fibrosis - Dec 2021 FREE PDF daily or weekly
See also WikiPedia
- Cystic fibrosis (CF), also known as mucoviscidosis, is a genetic disorder that affects mostly the lungs but also the pancreas, liver, kidneys and intestine.[1][2] Long-term issues include difficulty breathing and coughing up sputum as a result of frequent lung infections.
- Other symptoms include sinus infections, poor growth, fatty stool, clubbing of the finger and toes, and infertility in males among others.
- Different people may have different degrees of symptoms.
- Occurance: 1 in 30,000 in US, 1 in 1,300 in Ireland
- Primarily genetic, incureable
- Congenitally unable to process Vitamin K very well - wonder if vitamin K injections would help
- "While infants born with it 70 years ago would have been unlikely to live beyond their first year, infants today are likely to live well into adulthood"
- "Many people with CF are on one or more antibiotics at all times, . . . "
UK Cystic Fibrosis recommendations to be released in 2017
Download the UK NHS 2014 draft guidelines of Cystic Fibrosis from VitaminDWiki
Download the Comments on NHS guidelines - see page 16 for Vitamin D and CF from VitaminDWiki
It is interesting to note that the comments document is 2X larger than the draft document
Average annual cost of CF = $16,000 (March 2013)
Understanding the costs of care for cystic fibrosis: an analysis by age and health state March 2013
US $ Costs for patients with mild =$10,151, moderate, =$25,647 and severe =$33,691
Costs: hospital inpatients (58%), followed by pharmaceuticals (29%)
Download the PDF from VitaminDWiki
_"Cure" for Cystic Fibrosis - Trikafta - Costs $311,000 for a year
Washington Post Oct 2019 a tripple drug
improves lung function by about only 14%
unknonw how many years it needs to be take
Role of vitamin D on gut microbiota in cystic fibrosis - 2018
Journal of Steroid Biochemistry – Jan 2018 Pages 82-87
Mansi Kanhere, Benoit Chassaing, Andrew T. Gewirtz, Vin Tangpricha
Highlights
- Vitamin D plays a vital role in maintaining the integrity of the gut epithelium.
- The mechanism underlying this association involves the reduction of pro-inflammatory cytokines such as IL-8 and inhibition of inflammation-induced apoptosis of intestinal epithelial cells by vitamin D.
- Intestinal dysbiosis is prevalent in CF owing to multiple factors including malabsorption of nutrients and recurrent antibiotics.
- VDR regulates the composition and functions of the gut microbiota and decreased expression of intestinal epithelial VDR disrupts microbial homeostasis.
- Vitamin D could be a potential treatment option for altering dysbiosis in CF, but additional trials are needed to evaluate this.
Download the PDF from VitaminDWiki
CF results in pancreatic insufficiency-induced malabsorption - which reduces the response to standard Vitamin D - Jan 2021
Factors Contributing to Vitamin D Status at Hospital Admission for Pulmonary Exacerbation in Adults With Cystic Fibrosis
Am J Med Sci . 2021 Jan;361(1):75-82. doi: 10.1016/j.amjms.2020.08.020
Should consider gut-friendly forms of Vitamin D, such as nanoemulsions which can be absorbed in the mouth, rather than the gut
Associated with categories: Intervention - any 7, Breathing 5, Intervention - non daily 3, Magnesium 3, Genetics 3, Diabetes 2, Hypertension 2, Vit D Binding Protein 2, Tuberculosis 2, Virus 2 (May 2024)
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