Scared

Have just had a call from rheumy registrar to give me results of a recent ct scan. Apparently I have mild fibrosis in my lungs. Unfortunately I had looked it up on NHS website and NRAS site. Both seemed to say that it is potentially serious. In fact both said that some patients live as long as 5 years from diagnosis!!

I now have to have an appointment for a lung function test.

I don't normally overreact about things medical but this has got me worried. Should I be shortening my bucket list?

Has anybody else got experience of this?

14 Replies

oldestnewest
  • I can imagine you're scared, not a good thing to be told on the phone with no chance to talk to a doctor. Hang on to the fact that it was described as mild, and push to get an appointment to discuss with your rheumy and / or lung specialist as soon as you can. I've just had a CT scan this afternooon, and luckily for me all they found was nodules. Anyway I did read up on things in preparation and it did seem to me that there is a much better knowledge of how to help people with it, the different therapies and the drugs that help (and the ones that don't). So once you have full blown fibrosis then it is deadly serious, but you don't have that. Concentrate on asking questions about how to stop that happening to you.

  • Thank you. I have got to have a lung function test soon and hopefully will talk to rheumy after that. On a more positive note I went in to hospital today for a day stay for nerve block injections in my spine (I also have scoliosis). The anaesthetist listened to my lungs and reckons they sound quite clear. So I am feeling rather more relaxed this evening.

  • That's good. And anaesthetists listen to a lot of lungs so are pretty expert at assessing them. Hope the nerve block works too.

  • Thanks helixhelix. I have fingers crossed for nerve block as last ones didn't work very well. I am on a treatment plan of repeats every 4 months.

  • My goodness what a phone call to receive, as helixhelix says, you need to see a specialist who can speak to you and answer your questions, sap. You will of course need further tests, but maybe some reassurance while waiting for these to happen, without resulting to looking this up yourself. My rheumatologist telephoned me last Thursday week in the eve to say my X-ray in July showed a small abnormality but hadn't got any bigger than the one I had last year, which I didn't know about. Saw my gp he said not to worry as doesn't think it's anything sinister, might be a nodule. But it still shocked me to receive that call. I am waiting for a ct scan. I can understand why you feel scared. Please let us know how it goes and take care. X

  • I too have rheumatoid fibrosis and have lung function tests every 6 months I was on methotrexate but had to come of as it made breathing worse. I am on steroids now which seems to help. I know how worried you must be but try and think positive. Good luck in near future. Sophie 17

  • I am sorry to hear you just received a call rather than a face-2-face meeting with your consultant. I have a type of RA that attacks arms and legs. In my case it's mainly hands and feet. But it also picks and organ and in my case it picked my lungs.

    The consultant gave me the news face-2-face and showed me my results on screen. What I saw was a small amount of what looked liked cotton wool at the bottom of my lungs. They call it 'glassy appearance', it is basically scar tissue. Like you it is mild.

    I was diagnosed in 2012 and there has been no progression in my condition since then.

    I am under the Rheumatology Dept and also the Chest Clinic. You will probably have quite a few tests as part of the lung function test to begin with. After that they just perform a couple of tests every six months. Don't worry the tests are non-invasive.

    The lung function technician told me 'you have the lungs of an 85 year old man', I was in my mid 40's so obviously freaked. I told the Chest consultant and she reassured me (no doubt having words with the technician) that the condition was very mild.

    I asked the Chest Consultant what I could do to help myself and not just pop pills, she said swim swim swim. I went to the pool 3 times a week. At first I could only swim 2 lengths as I would struggle to get air into my lungs. After 14 weeks I was swimming 65 lengths. My lung function returned to normal and the head of dept said they had never seen anyone recover full function that quickly - well done - and now you can take it a bit easier!

    I no longer swim 65 lengths as it gets boring after a while. But I go to aqua aerobics 3 times a week and work my socks off in the pool to make sure I am working aerobically and thus keeping my lung function in the normal range.

    Yes I get out of breath more easily than I once did but that is because there is mild scaring.

    By the way I became unwell in Sept 2011 (diagnosed Aug 2012) so technically I should have died a month ago. Well I am still here and as I say there has been no progression in the disease.

    Take the meds BUT also do ask what else you can do like swimming - don't just rely on the drugs.

  • It's good to know that there has been no progression in that time. That sounds really encouraging... Thanks Joy_1

  • Are you on mtx? Have understood that there is a slight chance that mtx may cause fibrosis and when discontinuing the med the situation is resolved.

  • That is right Simba1992.

    There is an RA like mine which goes for arms and legs and then picks an organ. It is called UCTD (undifferentiated connective tissue disease). With my version when the joints are attacked they leave no damage - which is fab! However when the lungs are attacked they leave damage. So getting it early is what it is all about.

    If you end up on MTX you must be extra vigilant. MTX can cause fibrosis of the lungs as you say, but with those of us who have lung involvement with our RA we are at double the risk.

    However this risk still remains very low. You just need to stop taking the MTX if you develop a dry cough immediately. And according to my Consultant you know MTX is not right for you within the first couple of months.

  • It's really scary when you are told something like that, but hopefully it was caught early and treatment can make a difference. I agree with Double Helix - push to get an appointment STAT if you can..

  • Pulmonary problems are something which whilst doesn't concern me now niggles at the back of my mind a little having had historic lung problems & I'm not surprised you're feeling anxious, I think anyone with RD would.

    My first reaction was that the Registrar shouldn't have told you this over the phone, rather invited you in to discuss the results so it could be explained in detail & to allow you to ask the questions you doubtless have but it's done now. In your place I'd be wanting to know if this is due to abatacept or if it's a comorbidity of the disease itself & had anything been missed previously. I would also be asking if it's something for which a change of biologic, possibly to rituximab, would be considered though maybe that's one to question once you've had the lung function test & any other further investigations & results are received.

    We're here remember, keep us updated.

  • Thank you to all who replied. Please see my update in response to helixhelix's comments.

  • If you read the information on warnings this is almost always caused by the RA treatment medication methotrexate and you must talk with your reumatologist or make the decision yourself to stop this immediately. Once this is stopped, research i have read states that your lung functioning has the chance to return.

You may also like...