My mum is 88 and was diagnosed with IPF about 3 yrs ago. This past year she seems to have got progressively worse. At the moment she is on both Prednisone and Amoxycillin as she has had a lung infection. The dr gave her a ventolin inhaler to see if that helped but it hasn't made much difference. I was just wondering if anyone can recommend any medication or inhalers that may help. She is breathless just walking across the lounge and this past week she is breathless upon waking.
Any advice would be appreciated.
Have you and your mother had a discussion with her doctor about Perifidone? Also, my husband who is on the generic form of Perifidone and also the inhaler, Tudorza. Both have seemed to slow down the disease. I hope that this helps.
What she must have is a portable oxygen bottle. I have one that gives me four litres of oxygen per minute. Inhalers are no good. Get oxygen
Hi, sorry to hear your mom's getting worse. I am the same just going to kitchen and back I am breathless. Inhalers do not have any effect, the only thing I can suggest is to keep moving the less I do the less I can do. At first it is hard, but it does get easier the more you move. She should ask the Dr about Pulmonary Rehab, that really helped in more ways than one. It does sound like she needs protable oxygen. I have one that gives me four litres of oxygen per minute but I only use it when I am walking about out side or going shopping. I don't want to get reliant on it in the house.
Hi Alfiesmummy
I dont need oxygen but I certainly plan to have it ready when I need it. Hopefully when the infection clears up things will be better but do get the oxygen anyway.
I think the infection must be partly the cause and I just wondered if something like a steamer might help. This is a hard time for both of you.
I am 75 and have had pulmonary Fibrosis for a few years. Initially I made great progress taking large doses of Vitamin C. 1000.mc 4 times daily. Lately however my condition deteriorated and like your Mom. I can only walk a few paces. Without becoming exhausted. However I discovered a website called Pivotal Health There are numerous testimonials. From people who have found a cure in the product they sell. So I have ordered it. It is not cheap but if it gives me back my quality of life as it promises to do it will be well worth it. Best of luck to you and your mother. Carl
I was told by my nurse that inhalers do nothing for ipf apparently inhalers are for the tubes that close with asthma and ipf is as we know the lungs she also said ipf doesnt cause a wheeze like asthma does. Hope this helped. Xxx
Has the doctor prescribed a home nebulizer? I know that my mom who had advance stage of IPF was receiving a nebulizer treatment every 4 hours which helped with her shortness of breathe symptoms.
Would you please send me the name of this product? Any information u might have.
Thank You.
Michelle
Send toRev Pneumol Clin.1985;41(2):91-100.[Respiratory function and alveolar biological changes under the effect of CDP-choline in pulmonary interstitial pathology: pulmonary fibrosis and sarcoidosis].[Article in French]
Pacheco Y, Douss T, Pujol B, Revol A, Vergnon JM, Biot N, Brune J, Perrin-Fayolle M.Abstract
Various anomalies of pulmonary surfactant have been described in relation to acute respiratory distress syndromes, hypersensitivity lung disease and pulmonary sarcoidosis. Phosphatidylcholine (PC) is the essential phospholipid component of pulmonary surfactant. Cytidine diphosphocholine (CDP-choline) is an essential intermediary in the biosynthesis of PC. The authors studied two groups of patients: one group consisted of diffuse interstitial pulmonary fibrosis and the other consisted of pulmonary sarcoidosis with parenchymal involvement. They observed quantitative and qualitative abnormalities of the phospholipid fractions of surfactant and more particularly of PC. The finding of a marked decrease in this phospholipid, especially in the cases of pulmonary fibrosis, justified the study of the therapeutic effects of CDP-choline. After one month of treatment with this substance, at a dose of 1 g I.M. per day, the PC fraction had returned to normal and, at the same time, there was an improvement in the PaO2 at rest and after exercise. Long term administration of CDP-choline appears to be valuable in the maintenance of the phospholipid equilibrium of pulmonary surfactant and in the improvement of the quality of alveolar gas exchange.