Pulmonary Fibrosis and loss of muscle mass

[Little-Lung-Lulu]

Yesterday I had a video call with my Consultant from the Brompton in London. Bottom line is I will be going for CT scan, ECHO, lung function and bloods etc in the near future. I think she is concerned that I have lost weight. I was 8.7st and am now 6.5(4ft 8ns). Lost all my muscle. I thought steroids made you fat! I was thinking that it might be the Hydroxychloroquine that I was prescribed before the lockdown. I see that chloroquine makes you lose muscle mass. Has anyone had this problem? I still have a fairly good appetite. I am just much more breathless as I also have Pulmonary Hypertension. I am on water tablets for that. Would like to hear if anyone here has a similar experience.

[CDPO16]

Hi, I don't have the same lung disease but I hover around 6.5 stone, height 5'2". I too have lost muscle mass and am very breathless on mild exertion. We burn more calories breathing than healthy people and lack of exercise leads to muscle wastage too. There are strengthening exercises that can help build up muscle tone. The BLF has information and there are examples on you tube.

[Little-Lung-Lulu in reply to CDPO16]

Thank you for that CDPO16. I will have a look at the BLF website. Could be lack of exercise and movement. Definitely, I need those strengthening exercises. Its so frustrating feeling so weak when I was quite active previously. 😀

[CDPO16 in reply to Little-Lung-Lulu]

Know just how you feel Little- Lung-Lulu. It takes me months to gain a pound or two in weight only to it again within weeks. Unlike you my appetite is poor. I have dietary supplements via the dietitian, don't know if that might be an option for you.

I also have a set of exercises given to me by a physiotherapist last year but I do lack motivation at times when I feel to be waging a losing battle.

BLF did a free exercise DVD, I'm not sure if they still do. Let me know how you get on. Best wishes xx

[Caspiana]

Hello Lulu, 😊

I do like your username. Although many people put on weight with steroids I think it depends on the person . I was one who lost instead of gained after my transplant when my steroid dosage was high. Your doctor is right to be concerned. You know fighting to breathe can use up quite a surprising amount of energy and of course we breathe twenty four hours a day. I'm very glad they are taking it seriously and I am hoping they can advise you on ways to help you gain a bit more muscle. I suppose when we are ill we can't exercise so much so we lose it. Thinking of you and I hope you will update us on your visit.

Sending a gentle hug.

Cas xx 🍀

[Little-Lung-Lulu in reply to Caspiana]

Thanks for your reply Cas. Hearing from someone, or even reading about someone who has had a transplant always cheers me up. My PF has progressed quite slowly since 2006 and I have managed to live with it, but losing the weight over the past 4 months has made me very weak. I hope they don't make me wait too long for my appointment at the Brompton day hospital. Will send you an update after my appointment. xx

[Caspiana in reply to Little-Lung-Lulu]

Please do. I know it's so very hard, but keep putting one foot in front of the other. We are here for you anytime. *HUG* xx ❤️

[Patk1]

Hiya.i dont have yr probs,but i lost my muscle mass last year after covod,which i put down to being ill so often + for so long,i wasnt active in the way i usually am.is it same with u? Do speak to yr dr x

[Little-Lung-Lulu in reply to Patk1]

Hello Patk1. Yes. you are right I didn't move around as much during the lock down. I am hoping to get the appointment and all the tests done soon. Also going to do some strengthening exercises that are on the BLF website. Thanks for your reply. xx

[Runrig01]

Hi I have been diagnosed earlier this year with pulmonary fibrosis, after months of increasing breathlessness. I’ve been on steroids for years as I had polymyalgia, GCA then inflammatory arthritis. The steroids do cause muscle wastage, or myopathy as they often refer to it. I constantly battle to keep strength in mine, despite going swimming. When we initially went into lockdown, I was shielding and couldn’t leave the house initially, my muscles weakened quickly and I was falling regularly. In the end despite Boris saying stay at home my specialist and GP insisted I go for walks at quiet times to stop the muscles wasting further. It is still a challenge keeping any strength in them despite taking just 5mg prednisolone these days. It’s good they are doing lots of tests to explore what’s going on. As others say the extra effort breathing does burn calories. Hope you don’t have to wait too long 🤗

[Little-Lung-Lulu in reply to Runrig01]

Hello Maureen. Gosh, its no joke having to put up with all that pain and then to be told you have Pulmonary Fibrosis as well! I know that some of the medication prescribed for arthritis also affects the lungs. I am also on 5mg Prednisolone. I have been on this dose for at least 5 years. I did have some joint pain a few months before lockdown and was prescribed Hydroxychloroquine. I see it is also prescribed for people with Lupus and arthritis. Chloroquine is known to cause muscle wasting. I am eager to hear what the consultant has to say. Thank you for your reply. 😀

[Runrig01 in reply to Little-Lung-Lulu]

Yes initially my rheumatologist told me to stop my methotrexate as it’s been thought to cause pulmonary fibrosis. However when I seen the respiratory specialist she said that that was based on data pre 2000. Better research has been done which shows it actually slows the onset of PF. I’ve been on it 5yrs, so she said to stay on it. She also mentioned some ILD clinics are prescribing low dose 10mg MTX as it’s thought to slow things down. I’m glad as it keeps my peripheral symptoms under control. Unfortunately due to being on steroids so long, my adrenals have completely atrophied and I have severe adrenal insufficiency. So I rely on steroids and need to take extra to deal with stress. I also carry an emergency steroid injection which family have been trained to do. The adrenal insufficiency was discovered when I had a massive stroke age 52, found to be due to having no cortisol. In the morning your levels should be 450-550, mine was undetectable. Sad thing is I already suspected adrenal issues and had a 1st appointment booked for 3 weeks after I had the stroke. Could write a book with my health journey.

I do hope you get answers. I do use resistance bands in the house which I feel helps maintain what strength I have. Good luck going forward 🤗

[Little-Lung-Lulu in reply to Runrig01]

Gosh Maureen. You have given me quite a bit to think about. I might just query with my consultant about the low dosage of MTX to slow progression of PF. Thanks again. x

[Runrig01 in reply to Little-Lung-Lulu]

Here’s a link to one of the studies re MTX

journals.plos.org/plosone/a...

[Runrig01 in reply to Little-Lung-Lulu]

Here’s another one

rcpjournals.org/content/fut...

[Carnival567]

When I started to lose weight I was referred to a dietitian, which was very helpful. They contact me about every two months. I was also prescribed Fortisip, a drink which provides the necessary vitamin and mineral we need. So far I have managed to maintain my weight of 61kg (10st 4lb) at a height of 164 cm (5ft 5) even though I have a very poor appetite. I must have lost muscle mass, but since I am forbidden to lift or carry I haven’t been aware of it. I have restrictive and obstructive lung disease, heart failure and diabetes and am 78 years old.

[Little-Lung-Lulu in reply to Carnival567]

Hello Carnival567. The consultant suggested that I see a dietician. I am eating fairly well, but do get out of breath when eating, so have to pace myself. I am struggling to lift or carry anything. If I do, I get out of breath and dizzy. This is why I am a bit afraid of exercise although I do try. One of the consultants that I saw over the years said that I had both restrictive and obstructive lung disease. I have never questioned it, as I think I am in denial. I hope you are managing and getting help where you can. I am catching up with you and will be 74 next month. 🙂🤗😊

[Carnival567 in reply to Little-Lung-Lulu]

Having to admit you can’t do something you used to do without thinking is very annoying isn’t it.

[HighGables]

Hi Lulu,

I too have IPF and am under the Royal Brompton, and have been on 7.5mg of steroids for 5 years. Like you I have lost weight which I had put down to the lung medication, Nintedanib, as that is listed as a side effect, appetite suppressant.

I think like others its the breathing and coughing that uses our calories.I try to eat 3 meals a day but I struggle, especially with dinner. I just wish I fancied something to eat.

I hope you get your appointment through soon and if you get a magic cure for weight loss please share on here.😊. Jax🐶x

[Little-Lung-Lulu in reply to HighGables]

Hello. Thanks for taking an interest in my post. Are you still on the steroids as well as the anti fibrosis medication Nintedanib? I have PF not IPF, so am unable to have Nintedanib prescribed to me. I am hoping this might change in the future. At the moment counting each day as a Blessing. xx 😀

[HighGables in reply to Little-Lung-Lulu]

Hi LuluI am still on the steroids but am having a break, with a view to stopping the Nintedanib. I have been on it for a few years but the side effects just got too much, especially the bowel and appetite ones. I’m going for quality of life now 😊.

Enjoy life, and stay safe. Jax🐶x