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Lung problem, scaring me, prayers please?

Posted , 4 users are following.

karen0310
karen0310

I have had some nodules on my right lung that we believe are due to the RA and are monitored by CT scan every 6 months. On the last scan, in October, I also had consolidation which appeared to be pneumonia, and while I had no symptoms the day of the scan, they developed very rapidly, and I was treated, but also taken off all my RA meds except pred (which Rheum increased to 20mg) and put on daily pain meds. I've had the worst flare I've ever had, for 2 months now, and had to reduce hours at work.

Meanwhile, I was sent to a lung specialist, who thought it was either pneumonia or MTX toxicity causing the consolidation, and would clear up once treated/taken off MTX. I had pulmonary function tests, which are mostly normal, except for one little thing that correlates with consolidation. I had a repeat CT scan 2 weeks ago and to everyone's surprise, the consolidation was much worse than before. This past week I thought I was having a panic attack & went to my GP; he said no, I have pneumonia again. (I've had an occasional slight cough and mild shortness of breath since October; the 1st pneumonia had productive cough & high fever. This time I was having a low grade temp that would come & go, heart beating really fast, shakiness, and just generally feeling anxious, which is why I thought anxiety).

So now the lung specialist has ordered a bronchoscopy & biopsy of this lung, on Tuesday morning. I cannot stop worrying about it. The lung specialist says the consolidation could be inflammation, infection, or (least likely, he says malignant cells). If I search "RA and lung" on the internet, I find gobs on information, none of which is particularly reassuring.

Does anyone have lung problems from their RA?

Praying people, will you just say a little prayer this week?

1 like, 15 replies

15 Replies

  • ama38049
    ama38049 karen0310

    Posted

    Hi Karen, praying for you.

    I don't have lung problems (touch wood) but I am off any RA meds for three months already due to abnormal blood tests (liver and something else). The pain is really bad once you get off meds. I am not even on prednesone, so I can imagine how you feel...

    RA by itself does not cause lungs damage as far as I know, but meds that you took might have some side effects. Were you on biological? In many cases the damage is temporary and reversible or treatable... I hope that whatever causes this will reduce with time. Run all tests that they may think about. Ask questions and go to Drs for help not thinking that you are hypochondriac. You are not. And you will get better. I hope soon. Prayers. Hugs.

    • karen0310
      karen0310 ama38049

      Posted

      Thanks so much for prayers! I am sorry you are off all meds. I remember thinking (when on meds) how much this sucks taking all these meds & still feeling bad...and then going off and getting the full brunt of the pain and other symptoms. I was on methotrexate, plaquenil, low-dose pred and Humira (the biologic). Now it's just high dose pred & tramadol. It's just barely symptom management. There's no control of disease activity at all.

      I hope your labs start normalizing and you are able to start back on something helpful. Thanks again for prayers!!

  • Buckeyes
    Buckeyes karen0310

    Posted

    Absolutely, prayers coming your way!  I found out I had RA about a year ago!  I needed to find a new primary doctor because my other one moved.  I mentioned in passing that I had a cough.  I had smoked for 40 years!  He did an X-ray and found something on the lungs. Had a ct scan.  It turned out to be interstitial lung disease!  Do n't know whether it was from smoking or RA.  My rheumatologist wanted to put me on methotrexate but wanted me to see a pulmonary specialist. He did lung function tests and asked me if I was out of breath and I told him no.  He said I could take metho.  Fast forward to this year.  I had horrible swelling in feet and ankles and breathlessness.  Was sent to cardiologist who ran numerous tests!  Heart was okay but recommended I go off metho.  He thought it was making things worse!  I am now on high dose water pills and potassium.  Also on Enbrel.  Was doing great until the last 2-3 months.  Having huge swelling again.  Wearing support hose too!  Wondering if it's the RA cause I have more swelling in hands.  Seeing my rheumy again in January.
    • karen0310
      karen0310 Buckeyes

      Posted

      Do you feel like you have pretty good control on the Enbrel? I was on Humira until these issues started & they took me off.

      Water-related swelling can be really hard to address! Glad it's not heart-related, but may need lots of medication adjustments! I hope your rheumatologist can help there. How often do you see him/her?

      Does the ILD affect you much, or do you not really notice it? The shortness of breath I have is usually not terrible; I mostly notice it when I'm super busy and someone says "why are you breathing so hard?"

    • Buckeyes
      Buckeyes karen0310

      Posted

      I am only taking Enbrel and tons of vitamins.  The only issue is swelling in hands with achy wrists!  Wondering if extra swelling in feet and ankles is RA related because I'm on high dose water pills!  Since coming off metho I see my rheumy every 3-4 months since I don't need regular blood tests now.  I  do have shortness of breath but not like it was before the diuretics.  Thinking it's more related to lack of exercising since I have issues with my back.  

      I feel very fortunate not to have the horrible pain a lot of people have so the Enbrel must be working pretty well!  

      I'm to avoid the prednisone for swelling because I put on an extra 30 pounds when on it and still haven't lost it!

    • karen0310
      karen0310 Buckeyes

      Posted

      Yes; I've gained 45 lbs on pred in the last year. My rheumatologist was like "Meh it's expected" but my GP was horrified & referred me to a nutritionist. I'm pretty horrified as well. Working on that. I don't want diabetes on top of everything else! I will keep Enbrel in the back of my head when I see Rheum in January.

      Good luck with figuring out the swelling in your ankles! I hope it's something simple (water pill adjustment) and not the RA acting up. Thank you for listening & responding!

    • Buckeyes
      Buckeyes karen0310

      Posted

      You're welcome!  I tried to post about diabetes in my last post but site wouldn't accept it?  Last time I had blood work my ac1? Was high!  Endo doc wanted to put me on metformin but I refused!  My husband is diabetic and he is on it and the side effects are not fun!  I needed to lose 50 pounds before the prednisone!  

      I use the sure click injection once weekly and although it stings I think it's working!  Don't think I could do the hypodermic!  Cost is awful!  Insurance pays most but I still pay $200 for 12 injections!

       

  • Rowbirdie
    Rowbirdie karen0310

    Posted

    Hi Karen

    yes- will pray this week- 

    i know what you mean by researching RA and lung - I have RA related ILD( fibrosis in the lung) After getting scared because a bit of internet knowledge doesn't always help,I noted that this is becoming more diagnosed as the treatment for RA improves, meaning it was often there before without folks knowing it.

    I think the biopsy will give them a clearer picture of what s happening and better guide them in how to treat you, so hang on in there. I do feel for you. Is it still a possibility that the mxt was causing the breathlessness?

    it may not be relevent, but higher doses of prednisolone make me feel anxious and stressed- after all it is mimicking fight or flight adrenalin.i become a different person on it but sometimes it s the only thing that can help the inflammation so needs must.

    keep in touch.

     

    • karen0310
      karen0310 Rowbirdie

      Posted

      The internet is definitely not my friend right now! Waiting is hard and it may be January before we have clear answers (they plan to culture some samples & see if anything grows).

      I have noticed the higher dose of pred makes me irritable.

      Does the ILD affect you in a big way or is it mostly manageable?

    • Rowbirdie
      Rowbirdie karen0310

      Posted

      Thanks for asking.

      i don't have any obvious symptoms like cough or being out if breath, but I have crackles in my lung when listened to with a stethoscope- and I am aware of them. My pulmonary function tests are within normal range apart from lower transfer of oxygen which is due to thickening of lung wall. It s taken 2 cat scans and consultant visits to clarify this though .

      I had to stop the biologic tocilizumab, which was really helping then a few months later put on rituximab because it may help my lung as well and does also help the joints but takes longer.( as well as a trio of DMARDS) 

      Hope you soon get some answers and get put back on RA treatment. I am currently on rituximab( biologic) as well as DMARDS as it may help my lung as well. 

       

    • karen0310
      karen0310 Rowbirdie

      Posted

      Thank you! It makes me feel better to know there is still *something* they can treat the RA with..

      My rheumatologist started me on certolizumab after the 1st bout of pneumonia, then stopped it again after the follow up CT was worse + 2nd round of antibiotics for pneumonia.

      My concern is that I've had pretty severe disease activity for the last year; it's been very difficult to control in spite of all the things we've tried. Being off the RA meds makes me feel completely vulnerable and untreated, and makes me wonder: If what's going on in this lung is due to RA, shouldn't we be treating the RA????

      I have that low transfer of oxygen thing too, and crackles. Hoping the biopsy can guide the next step & the specialists can all work together! Fingers crossed for tomorrow. Thank you for listening & responding!

    • Rowbirdie
      Rowbirdie karen0310

      Posted

      All the best for today.

      praying for you.

      i m sure your rheumy will try another biologic ASAP . I agree Zap the RA and the effect on lungs will also reduce. But I guess they've got to check your lungs  aren't infected first. 

  • karen0310
    karen0310

    Posted

    The procedure went well and the pulmonologist believes it's infection. He took samples & we should have the results for sure in a few weeks. Thanks so much for prayers!
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