Pulmonary Fibrosis

Hope someone can advise, thank you.

I have recently been in hospital with Pneumonia and Pleurisy. I was told to have an chest x ray 6 weeks after I came out, which I had done. I am not due to see the respiratory consultant till Jan 2014. in the meantime I have seen my Rheumatologist who has now told me that I did not have pleurisy or pneumonia but, I do have Pulmonary Fibrosis in the early stages.

My question is, do you get a high temperature of 38.5 and severe pain on movement and breathing and coughing, also not being able to lie down flat if you have PF? I am totally confused and a bit scared as I have been reading up on PF and it sounds a horrific disease. I am already suffering from SLE(Lupus) which is a life changing disease in itself. Any help on this would be appreciated thank you.

10 Replies

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  • Caz - it sounds as if you have loads of questions to ask which I am not qualified to answer. However, it is good to come on and talk to us. I expect someone with better knowledge will come up with info. You really need to have a chat witht the BLF nurse. Click on the red balloon, top right corner for the phone no. Good luck.

  • Hi caz, sorry to hear that you be so I'll. I also would be frightening, believe me I also was. But give th BLF a call there always helpfully to support you. And can answer your questions. I wish you all help you need take care.xox

  • Hi Caz - my husband has pulmonary fibrosis, the only time he has a temperature, pain etc. as you describe is when he has an infection, in which case it's out with the antibiotics and steroids ASAP- these episodes do take a while to get over, and generally he doesn't get back to where he was before. Do make sure you get a proper diagnosis from a respiratory consultant - the new NICE Guidelines are very specific about what you should expect on diagnosis, not our experience but if you do have PF you need to do everything you can to protect your heart etc. Good luck - and I'm sure the BLF Helpline will give you lots of info.

  • I have PF and was told to always keep an eye on my temperature. Mine was due to a severe infection in both lungs 32 days in ICU got other problems to compound things as well and ended up with a paralysed diaphragm to help things even more. To top things off I have now found I was cutting asbestos in my early working life.

  • Hi Caz

    You might want to see you GP hun as it sounds as if you could have an infection which set in after your xray. In any event your GP should be able to interpret the xray for you and expedite your appointment with the consultant. You have a lot to cope with with the Lupus, all the more reason to let your doc sort this out for you.

    Good luck to you hun

    love cx

  • Hi Caz59

    It is very frightening to discover you may have a lung disease. There are a variety of diseases that involve pulmonary fibrosis. Ideopathic pulmonary fibrosis means that there is no known cause. As you have Lupus it is probably likely that your is not ideopathic but is related to your auto-immune disease. I have fibrosis related to Sjogren's Syndrome (another autoimmune disease). They usually refer to mine as NSIP (non specific interstitial pneumonitis), I think to differentiate it from IPF. The treatment and the outcomes are often quite different. A large part of my treatment is focused on damping my immune system sine it is my white blood cells getting out of hand and setting up infection in my lungs that causes the problem. At the start my rheumatologist oversaw my treatment together with the local respiratory consultant. As time has gone on my rheumatologist referred me to a specialist hospital, The Royal Brompton in London. I still see my rheumatologist every 3 months or so.

    I do hope the docs get you sorted out soon and started on an appropriate treatment plan. There is no cure but there are treatments that can ease the symptoms and slow down the progression.

    Maggie

  • I have had pulmonary fibrosis for years and years. It was as a result of sarcoidosis. I have never been told to look out for high temperatures. Although because I have bronchiectasis I get high temps when I get an infection. Try not to worry too much. Just take the advice given to try and see your consultant sooner and him put your mind at rest. M

  • Thank you guys for your support and info. I think I will get in touch with my Respiratory consultant's secretary and explain that my rheumy has given me a diagnosis of fibrosis and see what comes of that. Once again thank you x

  • Hi caz, I have had IPF for about 3+ years and never had pain although had the occasional temperature with chest infection. I do cough all the time which is limiting as to where you feel you can go. The hardest thing to deal with is the prognosis of 3 to 5 years although I am sure that some people live longer than that. If you are in the early stages it may be a help to know that a new drug is being developed in Scotland which is supposed to help people with fibrosis. (Read in newspaper). These things take a long time so maybe no help to me but a help to people in the future. I don't even know if trials are being done but am going to ask my consultant when I see him tomorrow. I am on oxygen 24/7 now but still go out in a wheelchair and still manage to bake etc at home so try to keep positive and think about living. No one knows what help will come in the future. Popplewell

  • Do anyone know how you can tie down size hz oxygen cylinder in car.

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