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Pulmonary Fibrosis

8 Replies

Living abroad and widowed, diagnosed 2 days ago with Emphysema and Pulmonary Fibrosis, been put on Prednisolone and have been told that I will be put on a treatment at the end of August that if I got out in the sun I have to be fully covered up, no skin showing. Is any one else on this been on this and will sun screen do instead of full cover up?

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8 Replies
AngieB72 profile image
AngieB72

I use factor 50 but then limit myself to about 10 minutes at a time. Figured it’s more healthy for me to be pale and interesting than whatever nasty side effects may occur!!!! And I used to be a Sun worshipper! Take care.

in reply toAngieB72

Hi Angie, thanks for replying, not a sun worshipper at all, hate the heat but as I have a holiday home and I have to take care of the large expanse of lawn 2000m2 every time there is a changer over, in September when I start this med there is a change over every week !!! takes me about two hours to mow it all and I have the same here at my house plus I have to walk my dogs which I mostly do in the cool of the evening in summer. Do I have to keep re-applying sun factor 50 whilst outside? say every 2 hours or is it safe to just re apply twice a day?

Are the side effects inevitable? Had a horrendous reaction to Symbicort. Do they ease off after a time? have a phobia about vomiting.

AngieB72 profile image
AngieB72 in reply to

I just know that I am now photosensitive so very prone to burning but I suppose it depends on which medication. Mine is for my lupus so probably not the same as yours. I think you need to talk to your consultants about it but I would stay covered up. Sun lotion is supposed to be applied every couple of hours anyway. Hope you find an answer.

lKeith profile image
lKeith

reglois

Hi, I have had severe emphysema and some of the medication they put you on has a warning that exposure to direct sunlight, and is not recommended. I go to Lanzarote a lot and do not wrap myself in cotton wool but I do avoid taking the "warning to sunlight" drugs unless I'm poorly, then I do stay under canopy cover so I can still get the air. Be careful what you take and do take some precaution within limits, don't stay in sunlight all day etc.

IKeith

in reply tolKeith

Thanks Keith

Not a stay out in the sun sort of person, in fact I keep out of it as much as I can but I do have to take dogs out, see to garden, huge, see to the holiday home I own and its garden, also huge, walk from car park to shops, these are the ONLY reasons I am out, I do not eat outside etc.

Daisy47 profile image
Daisy47

Hi Reglois! I have sarcoidosis, therefore intolerant to the sun. I don’t take medication for it. I use factor 50 sun cream and wear trousers, a long skirt, long sleeves and a hat and very black sunglasses. I don’t go out in the hottest part of the day. A umbrella is a good idea and frequently used in sunny countries. I will use one if I have to go out or when In sunny climes. However walking dogs and mowing lawns is not possible with a brolly.

Good luck.

Maureenpearl profile image
Maureenpearl

Hi Riglois, I use factor 50 and I wear long dresses and trousers all the time in the summer.

I am diagnosed with Mixed Connective Tissue Disorder (lupus) which has damaged my lungs (Pulmonary Fibrosis).

I have bought cover ups from Solbari.co.uk also special hat to cover my neck the clothing they sell is the highest sun protective rating. This company is based in Australia and my daughter lives there so I have asked her to buy the umbrella for me ( i'm hoping she can get it cheaper for me) it cost £35.

Hope this help, you can just search for sun protective clothing.

in reply toMaureenpearl

Thanks Maureen

Looked at Solbari, too expensive for some one on a pension, no sure I need to go that far though as I hate being out in the sun, the only time I will be out for any length of time is when I have mow, law here says before 8pm and walk the dogs out and that bit isn't until late evening.

I have checked and here I can buy a total sun block, hopefully that will do. I already have an ideal hat and always wear jeans.

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