COPD caused by RA nodules

Hi, my story is quite long so I hope I don’t want to bore you fellow COPD’ers. I was diagnosed 11 years ago with rheumatoid arthritis which was full on and took all the medicines they shoved in me. I had a huge problem of getting RA nodules growing everywhere in my body. I have had 5 toes amputated because of infected nodules also back operations and ovaries removed full of nodules.

I was having pneumonia and lung infections when they discovered I had nodules inside and outside my lungs – over 200 of them. They said it looked like cancer but upon a biopsy they said it was RA nodules. My inflammation levels were up to 120 they put me on Enbrel, Humira and then 2 different kinds of infusion. None brought the levels down for long.

I am now on Acternma for the last 2 years. The levels came down and I felt less pain but now the anti bodies are fighting it and the levels are coming back up to 130, they are supposed to be less than 15.

2 months ago I had a stroke and had 2 stints in my aorta which helped my claudication in my back as I could only walk 20 metres without being tortured in pain for 6 1/2 years. My nodules are growing rapidly and lord knows what is going to happen. I have always tried to be positive but the doctors last January gave me 2 years to live.

I am hopefully going to achieve more life than that. I honestly don’t know much about COPD except that sometimes you are that exhausted it takes all your energy to go to the toilet. My oxygen levels are between 90 and 95. I don’t know if that is ok. I have a new pulmonary doctor who didn’t even diagnose a really bad lung infection changing soon. Doesn’t tell you anything. Good luck everyone. I’ll be looking at the forum to see how everyone is doing. I am from Australia so I find some of the medicines they use over seas are different.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The COPD.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (2)
  • Christina Mattoni-Brashear moderator
    3 years ago

    Hi Andy,

    You’re definitely not alone here! We’re so glad to have you as part of our community;thank you for sharing a bit of your story.

    I’m so sorry to hear what you’re experiencing. In addition to the support and caring you’ll find in our community here, I’d also like to share the link to our RA community and FB page – another great place for you to find support and others who are having similar experiences:

    RheumatoidArthritis.net

    https://www.facebook.com/RheumatoidArthritisDotNet/

    Take care, and please stop by to let us know how you’re doing – we’ll be thinking of you!

    Warmly,
    -Christina (COPD.net Team)

  • Leon Lebowitz, BA, RRT moderator
    3 years ago

    Hi Andy and thanks so much for sharing your story. You’ve certainly come to the right place to learn more about COPD. I would suggest you begin with this article on the basics: https://copd.net/basics/ It’s a good place to start. I would also urge you to find a doctor who specializes in diseases of the lungs, called a pulmonologist. Together you can get a complete and thorough workup and come up with a treatment plan that can help you deal with the symptoms of COPD. You may also want to check out our Facebook page in order to interact with the many members who discuss all things COPD. You can access it here: https://www.facebook.com/copddotnet/ We’re glad you found us! Best regards, Leon (site moderator)

  • Poll