weight loss

ihave copd as well as pulmonary fibrosis severe stage iam losing weight fast and turning to skin and bone muscles and fat has all disapeard from my body.i was sent to see dietician who recommend I eat as much fatty food as I can but don't have much of an appetite.i know weight loss is part of this disease but didn't know about the loss of muscle wastage that is going very rappid has anybody else got this going on.ive gone from about 14 stone to 10 stone 6lb in about 8 months I believe this is due to the ipf

15 Replies

Hi teaky19 - I have severe copd but not ipf and dont know about how weight is affected by that condition. That's a lot of weight to lose in that time. It must be hard needing to eat but not having an appetite. Im 5'6" and weigh just over 9 stone but my weight loss has been from near 10 stone over the last year which is nothing like so extreme.

Re muscle wastage, I have found pulmonary rehabilitation very helpful - you get a range of exercise there including weights which help maintain muscle. And you get loads of advice which includes diet. They could discuss any possible concerns that exercising will cause yet more weight loss.

Protein is the food category which builds muscle - maybe you could think about the time of day when your appetite is best and try to get some good weight building foods in then. Cheese is good for weight gain, both protein and fat, peanut butter too. Someone will probably be along with a good website for helping with weight maintenance. When we had a dietician at our Breathe Easy group, after her main talk she went round everyone to talk about their individual needs as all our situations are different, even if we are dealing with the same thing.

It would be a good idea to talk your situation through with the BLF nurse on their helpline - they are brilliant and will be able to give you advice. 03000 030 555.

Good luck to you, jean

My dad lost 3 stone in 8 weeks due to this illness, he did loose his appetite dramatically, but he was then put on steroids which gave him back his appetite and his enjoyment Of eating again too.

You must speak to your doctor about this as not speaking up will just get you ignored.

My dad had us to talk up to the doctors and nurses, he was given weeks to live, but I insisted on the steroids to help him and we had him for much longer than they expected, which meant he got to celebrate his diamond wedding anniversary and my mums 80th birthday at home.

Please get all the help you can for this awful awful illness, you deserve the best treatment available.

Fatty food is fine if you can find your appetite and steroids do help you to feel hungry. Good luck. X

I've just lost about a stone due to c.o.p.d. on prednisolone so my appetite has improved a bit, and yet they tell us to eat healthily which I would think mean's not eating fatty food, what are we supposed to do?

I've been told that I should be aiming to eat three times a normal persons calorie intake a day. Hard as I can't even get to a normal intake. Also at least three litres of fluid a day. I manage that but it keeps me running. I now have four or five small snack type meals a day...I make sure one of them is a bar of chocolate....tough this diet. Exercise is the key.Helps blood flow and helps to keep the lungs free plus increases the need for food. I do chair based exercises...can do them whilst watching tv or when I'm sat in the garden watching the missus work. During the winter, I use my Wii. No, not the one I get from drinking three litres, the electronic box. Ten pin bowling, tennis all the things I would never do...better than the gym. I can have a cuppa when I want and I am not mixing with folk full of bugs. half and hour or so on the Wii wakes me up and gives me the feel good factor....especially when I beat the little blue git with blonde spiky hair.

:) :)


I just got xbox 360 connect and got dance party its sooooo funny its good to get heart ect pumping lol Joan x

Here I am again with my try powered milk that's what the dietician told me to put in everything I could and cheese, my consultant told me six small meals a day. But the others are right exercise is the only way to improve the muscle wastage, but it needs to be done with expert advice so PR is the way.

Hope you get back on track. Xxxx

HI all I have the problem too, always been very tiny before, the disease set in but now waisting away ,clothes hang off me. GP said well you have always been tiny, gave me something called callogen just take a small tot 3 times a day tastes like thick oil, vile its just pure fat, whats it doing for my colestral, excuse spelling, Do other people eat a good meal then find that there breathing gets really bad, on a full stomach, also to much chocolate and milk make my phlem worse, its a no win situation.!!

Hi June

Yes I find if I eat even a 'normal' meal I get breathless afterwards. Evidently if your stomach is full, it pushes up on your diaphram, which in turn pushes up into your lungs - hence breathlessness (info from pulmonary rehab). I serve myself small meals and stop eating before i have any sense of fullness.


I also tried callogen (vile!) and now drink 2 x bottles of Fortijus -apple- per day. I was only 7.5 stone when fit and now struggle at around 6.5, dropping lower when I have any infection. Dairy produce is known to generate phlegm from what I understand. I tend to eat well, just don't put weight on due to the energy used to breathe. I reckon exercising is the only way to put on weight for copd sufferers because exercises make the muscles work more efficiently, so reducing the energy required to breathe.

thank you for all the replies but also having angina and high blood pressure told by heart clinic to eat healthy foods im in a no win situation

I think you need to bear in mind Balanced diet...which you can adjust to your bodies needs. I have angina and high blood pressure, both normally controlled by medication. I bear this in mind when we plan diets. I always try to have my five a day. Some etc. If I find that the chosen meal is fairly high in salt, at least I know and enosure that I eat no more that day. The other thing is the portion sizes are right for me and gives my missus a chance to pig out on whatever she wants.I still fit in cheese and chocolate but I use the wii for some gentle exercise. Incidentally, if I wear my oxy meter when I exercise, although my pulse goes up and my sats go down,soon after I've started they start to improve and my pulse recovers to an acceptable level very quickly once I start.

Hello Teaky I fully understand how you feel before I was diagnosed I lost over a stone and only having ever weighed 8 stone 4 lbs at my heaviest everyone was concerned all my clothes were falling off too. Since being diagnosed in January I have 5 small meals a day and add ground flax seed and soya protein powder to some foods. I am now back to 8 stone and managing to keep it on. Weight when diagnosed was 6 stone 12lbs. Good luck.

Hi! My husband was 17 stone a few years ago. He has gradually lost weight and is now 13 and a half stone. I think it is because of the chest infections pneumonia and such. He is not eating very well and unless I give him food which is his favourite,by tea time he says he doesn't want any. I would try to tempt yourself with foods you like.

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