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Hi, I've been looking at the site for a few months but this is my first post.

I was diagnosed with rheumatoid arthritis 15 years ago. It came on very quickly and within 6weeks it affected most of my joints. After starting anti TNF injections I got my life back and was able to carry on as normal apart from the odd flare up, I thought that I had it if not beaten RA then definitely had it under contro

I have been struggling with breathlessness,coughing,chest pains for quite a few years, gp s and even rheumatologist dismissing it as RA in my breast bone and wear and tear.

I saw a locum doctor who thought differently last year and after tests I was diagnosed with pulmonary fibrosis caused by rheumatoid nodules and scaring in my lungs, also fluid between my lung and chest wall! This was in September last year, I wasn't really given any advice and I didn't know what questions to ask. At a second scan and lung function tests in May I was told the noduuals had grown to 6mm and were in both lobes still no explanation and no meds.

After 4 chest infections since then and this weekend really struggling to exhale and painfull to inhale I am going to my doctor tomorrow morning to insist that I I want information about whats happening as I I just don't know. But need someone to talk to me about this disease and explain, I'm not even sure if numerous noduals of that size is bad. What I do know is I'm struggling to have any quality of life at the moment. If anyone as any advice on what questions I can ask I would appreciate it please.

Thank you for taking time to read this. Linda

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  • Posted

    I don't know if I can offer any advice as I don't have RA, but I do have breathing problems and was diagnosed with moderate COPD about 7 months ago. Over the years my shortness of breath took me to the ER on numerous occasions and chest x-Ray after chest x-Ray and a CT scan about 3 yrs. ago. My primary care doctor gets all of these test results but never went over any of them with me so I just figured I was fine. Then when I got access to my medical charts online and got to see the results of all the x-rays and scans I was shocked to read that lung nodules, thyroid nodules and calcifications were reported as well as partially collapsed lungs. My doctor never discussed any of these findings with me so as you can imagine I am very frustrated that I may be living with something that could have been treated years ago. To make matters worse I also have obstructive sleep apnea which adds to my fatigue and breathing difficulties. I definitely can sympathize with your situation, especially when you have health concerns that the doctors don't address. Best of luck & hope you get things figured out soon & get better.

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    • Posted

      Thank you Jeanette, the treatment you have received is very simlar to mine and I agree its very frustrating to not being told exactly how this condition is affecting us.

      You have been a help as I will ask to see my record's when I I go for my appointment.

      Wishing you a good day Linda.

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  • Posted

    Hello Linda, so sorry to hear of these complications that have arisen, and the confusion it must be causing since No one is telling ou anything.  If you have a video camera on your phone, I would definitely take it to the doctor (all of them) and record every word he says...ask a lot of questions..  Find out what your FEV scores are , get your pulse/oxy numbers.  You may even request that they give you a ct or MRI scan with contrast.   I like Jeanette suffer from COPD and my lungs are that of an 80 year old.  It's not something any of us can cure becuase there is no cure, but we can slow the progress.  I can certainly understand your frustration in not knowing.  Please feel free to let us know how we can help you get the best answers we are all in similar situations each with it's own complications, but we are supportive.  It's my understanding that Fibrosis is the lungs hardening like breathing thru cardboard.  I don't know much about it, but you can google it....and then talk to your doctor about any treatment plans.  We wish you the best and will be saying a prayer that you will obtain the correct diagnosis and the best treatment plan possible.  Make sure you keep a copy of every medical dianosis, test, and prescription, so if you have to go to another physician or out of your local area, new doctors will have your history.  God Bless.  If you are in the united states there are a lot of lung programs doing work if not the UK also has Lung associations.  Good luck, and let us hear from you.  Breathless.

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    • Posted

      Hi breathless,

      Thanks for the really usefully information. I hade an appointment with my gp( I'm in the UK by the way ) yesterday was sent to the city hospital where tests confirmed that I have got pleurisy.

      I am now taking strong antibiotics and 60mg steroids a day so hopefully will start to ease up. I had below average oxygen levels and very low peak flow and lung function for my age (57 ) hopefully these will increase after I've got rid of the pleurisy.

      Any other questions " I have to save for my lung consultant ".

      In the UK the local gp,s and the hospital do seem to do a lot of passing the buck!

      I think what upsets me the most breathless is that I have a very supportive family, husband two son's and their wives who live within a few minutes away, but I also have a 16 year old daughter who is just begining A levels, before going to university and it upsets me for her to see me like this and I just want to see her through her education and settled, but hopefully thats what I will do.

      Thank you for your prayers and thank you for responding,you and jeanette

      Linda

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    • Posted

      Good morning, so glad you got to the physician.  Now like most people have told you on here, you still need to continue to find out as much as possible about your Lung Functions.  Get a good pulmonologist.  And keep every single test, paper, discussion, and your results plus all medications somewhere close either on your phone or in a tablet so that if at anytime you need to show an ER doctor or you are away from home you have this information with you.  Stay out of polluted areas and large crowds.  You can live a good long life you are just going to have to be proactive in your own treatment.  Get informed, and if people don't understand your condition then you don't need them in your life.  You want to live as long as possible and this is not a disease that is reasonable in price.  It is one of the most expensive diseases to treat ......God bless and keep up your exercises.....Breathless.

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  • Posted

    Hi linda, sorry I missed this yesterday.  I would say ask your GP for a referral to a respiratory consultant who can action the tests required to determine your treatment and extent of lung damage and explain this to you.

    Also check out patient UK search page here:  http://patient.info/search.asp?searchterm=pulmonary+fibrosis&searchcoll=All

    there is a discussion forum just for pulmonary fibrosis:  http://patient.info/forums/discuss/browse/pulmonary-fibrosis-1760

    Hope you have a good visit with your GP and that you can get an appointment with a specialist soonest.

    In the short term your doctor should prescribe you with bronchial dilaters to help you breath easier, but do check with other people on the pulmonary fibrosis discussion forum for what they may suggest.

    Take good care and Best wishes V

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  • Posted

    I was diagnosed with the same but not seen anyone yet to exp,ain't it to me it's discusting .6 months ago  I had my scan .i was coughing a lot and yawning a lot and taking deep breaths .i read up about hydrogen peroxide and started taking that and my coughing stopped straight away I'm looking for ways to heal myself 

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