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Asthma or interstitial lung disease
I just had a pulmonary function test and it showed that my asthma was worse and my COPD is actually ILD. An ex-ray for bronchitis showed prominent markings for ILD. I am on a nebulizer to be used in the am and every 6 hours as necessary. With the Corona virus and having AFIB. PVC's, Sjogrens, plus severe arthritis, a meningioma, fibromyalgia etc. I am afraid to go out. My lung doc said the ILD is caused by Sjogrens. Is there anyone on this group who has ILD and are you on any treatment. I am getting out of breath more often. I am 75. I will have a HRCT in May and see my lung doc the end of May to see how bad it is. I have looked on Google and it really scares me. I have to wait to May as they want my asthma under control before I have the HRCT. Thanks for your help.
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I’ve smoked on and off my entire life. I’m 58 now. It’s harder to quit. I have very bad asthma and mild COPD. I know I need to stop but the more I try the harder it gets. I have a breo and rescue inhalers. Could use some suggestions
Question and wondering what others have been told and experienced.
My respiratory doctor (pulmonologist, as you call them in the US) and my rheumatologist have both said that there is no need to hide from the sun or avoid outdoor activities while taking mycophenolate for ILD. Their advice is to enjoy life as normal while being sensible and responsible about sun protection. Many people still enjoy, hiking, swimming, running, walking, cycling, sports outside
They explained that yes there is an increased risk of skin cancer while taking mycophenolate, but that the risk is generally considered low and uncommon IF you practice good sun safety (SPF 30/50) including regular use of sunscreen and avoiding sunburn.
They also said that if I find I find that I am still sensitive to the sun or still burn despite using sunscreen properly, then I should cover up with lightweight clothing. But, they did not feel that UV-protective clothing was necessary for everyday life. They did recommend a wide-brimmed if I'm walking outdoors for more than 30–40 minutes.
Similarly, if I'm sightseeing, spending a full day outside, or likely to be exposed to the sun for extended periods, they advised covering my skin to avoid prolonged sun exposure. Obviously NO sun bathing. But if I’m walking around for 30 mins or in and out of the car that I can use shorts as long as I have sun screen.
Their overall message was to be sensible and responsible with sun protection, but not to hide from the sun or stop living my life and take reasonable precaution using sunscreen regularly
Have others been told something similar, or have you received different advice? I only started the medication this week and I'm trying to do the right things, especially going into summer.
Thanks!
I think that is sound advice and was the way I lived the entire time on Cellcept. Was outdoors a lot but wore wide brimmed hat in the summer and I never sunbathe (too vain re wrinkles :-).