Anyone with IA & suspected lung disease?

Hello

I'm not certain I’m posting in the correct place. I got results from my keyhole lung surgery - no cancer but signs of necrotising granuloma so I’ve been referred to a TB clinic. GP wants me to restart MTX after stopping for 4 weeks but I’m apprehensive in case that caused lung problems. No flare in joints but seems like flare affecting lungs. Can’t sleep at night - wake with ‘surges’ every 2 hours. I’m struggling to understand my body & my poor hubby is worn out. Medics presume I have anxiety which is Understandable from their perspective but I suspect it’s Return of my IA waking me up. I’m taking max paracetamol.

Comments

  • MsP
    MsP Member Posts: 10

    Thank you

  • kathleenT
    kathleenT Member Posts: 3,384

    How I feel for you. RA and Methotrexate are notorious for lung problems. I have Asthma and Bronchiectasis, but still take low dose MTX. Have you ever visited the following website?https://www.nras.org.uk/the-effects-of-ra-on-the-lungs

    Packed with RA info and is very helpful. If you are on facebook, you are welcome to join our group, https://www.facebook.com/groups/1441690062727293 Crazy Arthritic Creakies. It's for all with any type of arthritis, but the majority of us have RA and lung problems. Please join us if you can. 😊

    "Women and cats will do as they please, and men and dogs should relax and get used to the idea." Robert A Heinlein

  • bagpuss
    bagpuss Member Posts: 14

    I have had RA for about 30years and was on methotrexate until 2 years ago I was getting a lot of chest infections and breathing problems, it has taken a year or so to be diagnosed with COPD. My consultant wants to put me back on methotrexate but I am scared and unsure about this. I understand methotrexate can affect the lungs , which are never checked by RA nurse/consultant also when on methotrexate before I was forever picking up severe chest infections and other infections. I am really scared and don’t know what to do for the best. I have explained my concerns to RA consultant/nurse but all they say I have to go on something. Any views or advice please

  • frogmorton
    frogmorton Member Posts: 26,737

    Hi @bagpuss

    A rock and a hard place I can see where you are😕

    In your case would it be helpful to have the advice of a Lung specialist maybe? Would your GP refer you for an opinion?

    I know seeing a pulmonologist isn't easy these days, but just for an opinion to put your mind at rest? Also have you read @kathleenT 's link above to the NRAS?

    Love

    Toni xxx
  • bagpuss
    bagpuss Member Posts: 14

    Hi frogmorton.

    Both RA consultant and respiratory team have said ok to take, but I have been let down and over looked that I am losing my faith. I know things are difficult at the moment and I understand but my lung problem was discovered March 2019, and filed away to be forgotten about. Sorry to go on and yes I will look into what Kathleen put on and thank you for your response

  • frogmorton
    frogmorton Member Posts: 26,737

    Do let us know how you get on @bagpuss I can see why you feel extra cautious feeling overlooked ((()))

    Love

    Toni xxx
  • Saltmarsh
    Saltmarsh Member Posts: 40

    I have COPD & Rheumatoid Arthritis. Both these conditions have to be treated, and we need to learn how to help the medics help us. They are people too and can be talked with openly & naturally.

    In case it helps:

    I have Trimbow inhaler twice daily for the lungs + Salbutamol reliever when necessary. My surgery has a specialist chest clinic which refer to GP when necessary, he is also accessible by appointment. Find the doctor who suits you best & form a relationship.

    I started off on Methotrexate for the RA, tablets & then injection (nothing to fear), and Sulphasalazine which didn't suit. Now on Baricitinib. Rheumatologist super & specialist nurse team. You can ring the dept. any time with queries. These people really know their stuff, will be fully aware of your other conditions & medications, and should be the first point of enquiry.

    If in any doubt about anything at any time - ask!

    Versus Arthritis, NRAS, British Lung Foundation + Health Unlocked v valuable sites to accompany on journey. Every good wish.🍀

  • Jona
    Jona Member Posts: 323

    Hi Bagpuss,

    Just wanted to send big hug 🤗 and flowers 💐 to let you know I’m thinking of you

    love Jona x

  • Hi @bagpuss

    I was born with Congenital Heart Disease and have had RA for about 10 Years. I started getting more chest infections and I am taking antibiotics every day. I found out I had Lung Disease as well and my RA was getting worse as well. I had my Mtx increased because it also opens the airways of your lungs as well. I found out that the RA has caused myself to have Interstational Lung Disease which means that the branches of my lunches are scarred. There is nothing they can do for me. I have also got Heart Failure.

    I have just started Baricitinib on a really low dose so I can eventually come off the steroids. I have been on those for about 7 years. Please don't be scared of taking MTX especially with your lungs. It does help your lungs. I see a Cardiac, Respiratory and Heart Failure Consultant all at The Royal Brompton Hospital.

    Unfortunately, the RA has also given me a Hypersentivity Larynx. Because I have ILD and Heart Failure and my CHD I have been told it is incurable, and I am currently receiving Palliative Care.

    Fruitbat1981

  • Nmnm5454
    Nmnm5454 Member Posts: 2

    I had methotrexate for last 5 years.I was only seropositive n not symptomatic.now diagnosed with lung cancer,after experiencing shortness of breath.

  • Poppyjane
    Poppyjane Moderator Posts: 186

    Welcome @Nmnm5454 to the online community,

    I see you have sent in three posts this afternoon and are concerned that after taking methotrexate for five years you have developed lung cancer .

    I attach a couple of links that you might find helpful

    The Helpline team are able to offer you support and advice and it is often helpful to talk about your concerns. As you can see in the above posts members offer peer support to each other and on occasions signpost to other recognised sources of support. The community also has a variety of activities and opportunities that you might enjoy browsing round.

    We look forward to hearing from you again soon.

    Take Care

    Poppyjane