JUST BEEN DIAGNOSED WITH PULMONARY FIBROSIS

[rosie1928]

Hi everyone,

can you help? Just got the diagnosis yesterday of pulmonary fibrosis. Its only a small patch on my left lung but I have been short of breath for a long time. Also diagnosed with two very small lung clots 6 weeks ago.

Can you share your experiences with fibrosis. I always knew that this was a secondary condition of RD but dont know a lot about it. Some of the reports on the internet are frightening.... shortened life span etc.

I noticed shortness of breath about 4 years ago and though it was just asthma. By the way I have that as well with thickening of the bronchial tubes. Havent got a lot of energy these days.

Looking forward to hearing from you.

Rosie

[Gnarli]

Hiya Rosie1928. I'm sorry to hear of your recent diagnosis. Unfortunately, you've come to a forum for those with Rheumatoid Arthritis. Might I suggest you try the British Lung Foundation where you will find lots of information and help. Best wishes

[rosie1928 in reply to Gnarli]

Thanks Gnarli. Yes I have Rheumatoid Arthritis as well and usually come to this forum but will try the other forum as well. My GP says the fibrosis is a result of RA.

[Gnarli in reply to rosie1928]

I'm so sorry, Rosie. My knack of grabbing the wrong end of the stick strikes again.

[rosie1928 in reply to Gnarli]

thats okay Gnarli,. I didnt ask my doctor much. Just a bit taken aback I guess. Have made another appointment and i will be firing questions at her . lol. She is lovely.

[Brikel in reply to rosie1928]

Hi I’m the same I had an IPF diagnosis a few years ago and then the RA diagnosed a year later

I have different ailments and consult different forums but all under the healthunlocked umbrella so it’s easy to get mixed up

[rosie1928 in reply to Brikel]

thanks so much for your response. Im still in shell shock mode from learning the diagnosis. LOL

[Lolabridge]

Hello Rosie. I’m sorry to hear about your recent diagnosis. Unfortunately lung problems are all too common with RD. Sometimes they are caused by the disease itself but the meds we have to take can also cause them.I have scarring in my left lobe and also recently diagnosed with a pulmonary embolism in each lung which had caused breathlessness and chest pain for a while. I’m taking apixaban to clear them and waiting for an appointment with the respiratory consultant to find out what more can be done, if anything.

I hope that you will be offered some treatment to help you feel better and give you more energy.

[MJSlide1958 in reply to Lolabridge]

Hi Sorry to hear this. Is it caused by RA or the meds?

[Lolabridge in reply to MJSlide1958]

It could be either I’ve been told. . My RA was very aggressive and it took many months to get it under control. But I also had bad reactions to all three DMARDS.

[MJSlide1958 in reply to Lolabridge]

I do hope you settle.

[rosie1928 in reply to Lolabridge]

thank you so much

[rosie1928 in reply to rosie1928]

I'm on methotrexate so I guess it could be the meds. Been on methotrexate for 12 years

[allanah]

Hi good advice to also look into the Britush lung foundation who are a marvellous group. Yes unfortunatly I know RD is a systemic disease and many on here have had problems with lungs. I hope they get you well controlled soon xxx

[rosie1928 in reply to allanah]

thank you for that information

[allanah in reply to rosie1928]

More than that , sending love xxx

[Neonkittie17]

Sounds like you have RD and now PF? Hoping you can get some good advice from people who are managing similar conditions. xx

[rosie1928 in reply to Neonkittie17]

thank you very much

[Otto11]

Hi sorry to hear this. I went through similar a few years ago. Initially came about on screening for new Biologics. X Ray showed possible interstitial lung disease so referred to Respiratory team for CT’s. I too have asthma by the way. They found several modules & a small area of fibrosis but ruled out ILD thank goodness. Another CT 3 months later & all sorts of lung function tests showed new modules & ground glass. This went on every 3 months showing something different each time. I’ve been admitted with Pneumonia a few times but latest CT showed Bronciectasis. I so far havnt had any treatment but they are putting it all down to my RA & say Rheumatology just need to get my inflammation under control which it wasn’t. The Rituximab wasn’t controlling my lung symptoms so swapped in March to Abatacept which seems better. I recently had another X Ray & waiting for results but havnt been seen by respiratory team for a year because of Covid so don’t know what the next step will be. Let us know how you get on. Take care xx

[rosie1928 in reply to Otto11]

Thank you Otto11. Yes its all a bit mystifying. I told my GP over a year ago that something wasnt right.... I was tired and seem to lack energy. I slept 12 hours a night and still tired. I suspected secondary conditions of RA but no-one else seemed to! Oh well.

I will just have to be a little more insistent from now on. I remember I had a kind of rumble on my lower lung and every tiem the doctor listened it wasnt there. I used to be a nurse and we called it crepititus. That was two years ago. The wheels turn slowly!

I was so sure she wrote in her notes " imagining things" mmmm. Hyperchondria.

But now i have a diagnosis and hopefully I will get the right treatment.

I feel a bit silly because I KNEW there was something wrong and I was too timid to push.

[Otto11 in reply to rosie1928]

Bless you. I too was a staff nurse. I’m the same as you way too timid to push when you know things aren’t right. I’ve recently written to my Respiratory consultant as his last letter was very contradictory saying I had courses of antibiotics when I didn’t etc.Incidentally I frequently went to GP with breathing issues & he couldn’t find anything wrong then a week later I’m in hospital with a chest infection or Pneumonia. It’s all rather odd. Unfortunately with Covid it’s one of the teams hit very badly so things are much slower than usual. I do hope you get some input really soon. Take care xx

[rosie1928 in reply to Otto11]

Thanks Otto. I guess we dont live in a perfect world. And recently some of my appointments have been by phone before i was diagnosed with the embolism... The covid 19 changedthe way I dealt with my doctor delaying the diagnosis. I think the clots have dispersed as breathing a bit easier.

[Pulfs]

Hi Rosie, sorry to hear you've this diagnosis on top of RA . Hope you can get good support and help from your Drs . Gentle hugs to you xx

[rosie1928 in reply to Pulfs]

Thank you so much. I am starting to get my head around iit all.