[Member Discussions and Questions] Breathing Issues with Rheumatoid Arthritis?

February 7, 2013

One member is going to a doctor appointment next week for shortness of breath but she wanted to know if any of you have experienced this as well. Here is her message:

I was wondering if any has had breathing issues with their RA …I am unable to walk very far before I get shortness of air and its scary at times. 

Thank you in advance for your input and sharing your experiences to help answer this members question. (((pain-free internet hugs)))

What our members have said so far:

Nicole – Yes I have, I ended up with pleurisy 2 xs this past year as well I was told both are just part of Ra and unfort for me it is attacking my lungs as well as my joints. All you can do is take it easy And keep going and smile

Angela – I have also had pleurisy before and have trouble breathing. I’m currently on Rituxin and MTX, and didn’t have this problem before taking Rituxin. Works wonders for RA, but not so well for my breathing..

Betsie – I have had a lot of trouble with that as well but didn’t know it could be the ra. I assumed it was because I was out of shape. I’m have to check into that.

Sharon – I’m experiencing breathing problems as well and now under the respiratory department at my local hospital. I do have asthma so not sure if its RA related as yet. Just undergoing different test. Hope all goes well for u. Internet hugs X

Kelly – I’m always out of breath in the middle of the night when I get up to go to the bathroom. I think it’s the same thing as Nicole.

Alanna – There is something called RA Lung, your rheumatologist can send you to a pulmonologist to get it confirmed. They will do xrays and a pulmonary function test. Unfortunately, I have the testing scheduled in two weeks due to this problem. RA can attack the lungs.

Tammy – Yes, I’m overweight , losing some now ! Dr put me on inhaler symbicort & inhaler Ventolin

Natasha – Me!!!! Wow! I just had a nebulizer brought in today. I’m on prednisone and two inhalers for it. I have a pulmonary specialist but I don’t know why this is happening. It started over a year ago and has gotten progressively worse and more frequent. The specialist said its due to the inflammation with RA. It’s strange that this would come up because just this past week I saw two different postings on one of the RA sites who mentioned pulmonary fibrosis. Before the. I had never heard of anything specific to RA and lungs except that its an attacked organ along with heart. I pray not because it also mentions a 3-5 yr life expectancy. I see her again next week. I will ask her then. Oh I also read you can get a CT scan of your chest.

Nancy – Yes I do.

Becki – Yes I have had SOB for couple of years now.Have had all the test and studies done and they came out normal.So now the Dr says it is do to stress.Like Nicole says taking it slow and easy.Sending xoxox’s hoping for a good out come.

Marlene – I also have shortness of breath. Have also had pleurisy and bronchitis, both due to the RA. Also had numerous other infections.

Rain – Yes, RA hit my lungs first. It happens sometimes. Once I realized it was RA that took some of the stress out of it. It’s treatable. Good luck to you ((()))

Tracy – I have shortness of breath for the past two months. Now going through tests to see what’s going on.

Kim – Yes, I have also had pleurisy a few times & I’m always feeling short of breath. Dr. gave me a script for an albuterol inhaler that helps when its real bad.

Dee – I have just been to the doctors for the very same thing, he says I have inflammation of the chest wall due to the flare up I’m having at the moment and there’s not a lot I can do about it

Rachel – I do it just came up a couple months ago. there are joints in your neck so its possible. i have issues with singing sometimes also i get like hot flash type things in the evenings and my throat starts to close up. good luck!

Jojo – yes i am having issues right now…am on mtx and simponi plaquenil

Elaine – I went to my PCP with shortness of breath and elevated heart rate along with muscle/joint pain just before RS diagnosis. After referral to cardiologist and battery of tests, they could find nothing wrong. She put me on Toprol which helped the heart/breath symptoms, and I went through more tests to finally be diagnosed with RA. No one has ever told me the symptoms were connected. Will definitely discuss with my rheumy at next appointment.

Geraldine – I did and it turned out that I have 2 Blood Clots in my lungs and now I am on Coumaden and Oxygen for 1 year.

Sonia – Yes I also have shortness of breath too I have pulmonary fibrosis.

Lesley – I get shortness of breath had it at hospital a couple of weeks ago so it’s recorded on my records also but finding it harder to do things

Angel – Yes and I get heart palpitations as well. I’m seeing a cardio on the 20th for this. I’m not sure if its related to my RA or what…

Rebel – I did and was diagnosed with early heart failure but meds and low sodium diet is helping me.

Peggy – No way! I literally just posted something about it. I have two lung nodules caused from the RA. I started having shortness of breath almost two years ago. The doctor thought I was having asthma and pleurisy. I’ve used Advair and Ventolin for two years. It has continually gotten worse, with more symptoms of shortness of breath with any exertion, fatigue, chest pain, and dizziness. I am now going in for a right heart catheterization because my pulmonologist thinks the RA has caused pulmonary hypertension. Please don’t let it get worse!

LaShelle – Yep the pulmonologist diagnosed me with COPD. I take Singulair and Symbicort (been on it since I was 38)… and it helps a lot I can definitely tell when I don’t have them.

Becky – Peggy…my prayers are for you!

Helen – The posts here are important about the connection of RA to lung disorders: pleurisy, costochronditis, interstitial lung disease (ILD), pneumonia, inflammation, infections, deconditioning due to lack of exercise, steroid use, methotrexate lung, etc… The other factor can simply be the amount of physical exertion it now takes for us to move with RA and there can be no lung “disease” issues at all. It is good to be seen by a pulmonary specialist and have a CT scan of the lungs. I think trusting yourself to know there is something off with your breathing and that the answers will come is important. We now have so much information available to us from one another, the internet, and from our doctors that answers are available. Best of luck with this.

Marilyn – I also had trouble breathing, my doctor sent me for stress tests- I had to stop. I couldn’t catch my breath and my BP went high. Unfortunately my doc was supposed to follow up with Pulmonary doc and hasn’t yet.

Cheryl – When I am relaxing on my back I sometimes haves shortness of breath!…it doesn’t happen all the time,just now and then

Rhonda – I haven’t had any issues with my breathing other than my asthma.. Feel better girly.

Angel – I’ve had reoccurring pleurisy for some reason….interesting to see all this linked to RA. I had a few bouts of pleurisy before my RA diagnosis even.

Karen – For just over a year I have been having problems with nodules in my lungs. Both lungs have collapsed a few times and I have also had 3 infections, so bad that I almost died from them. You need to make sure you tell your Dr. about the problems you are having with breathing, that’s how it started out with me. Good luck!!

Elaine – Yes I do. It happens on and off.

Karen – Hi, I don’t have RA. I do have scleroderma and I was having shortness of breath problems for years. My shortness of breath was dismissed as symptoms of scleroderma. In 2007, I saw “possible lymphoma” in a radiology report from a local ER- who had again dismissed it as “scleroderma symptoms” I brought that report to my pulmonologist at UCLA (120 miles one way). He ordered a pet scan that came back positive. A biopsy was scheduled and as result, granulomas were found in my thoracic lymph nodes, not cancer. I was diagnosed with sarcoidosis. I was prescribed an immunosuppressant that keeps the size of my lymph nodes normal- except during times of a flare or stress. What would happen is, my lymph nodes would swell, decreasing the ability of my lungs to expand and resulting in shortness of breath. My symptoms are under control by weekly doses of methotrexate and infusions of remicade every eight weeks. I hope you are able to find a solution and treatment. Don’t give up. It took me 11 years to get the correct diagnosis and then treatment. You may need to travel, you may need to be assertive. Wishing you strength and patience while you search for answers.

Teresa – I’ve been seeing the pulmonologist since October when I was having a bad flare and became really short of breath. I had times when I was using rescue inhalers every 2 hours. Rheumy was worried about interstitial lung disease but thank goodness it’s not that. They’re saying it’s asthma due to acid reflux, but I have my doubts because it’s gotten better since I started getting Remicade infusions. I use Dulera inhaler 2 times a day and have Atrovent for if I need it but I only use it a couple of times a week now. There was a slight cloudy spot on the ct scan of my lungs that they say is either due to acid reflux or an old RA flare. My advice is see a doctor ASAP, my docs took it really seriously when I complained of SOB and got me in to the pulmonary doctor right away and she says she’ll follow me for life now.

Linda – So does the steroids not help with the inflammation around the lung area

Sarah – I’m cutting out all dairy as I have learned it really increases inflammation. My bronchitis is clearing up. Take care..

Suzie – I have and still have it at times. I have major iron deficiency, which my docs say is caused by my 3 auto diseases. One being RA.I now have to get iron infusions at hospital. Seems to help. Not sure if that could be your problem cause we are all different, but maybe have them check your iron. Worth checking. Mine got so bad combined with auto diseases I had a heart attack. It seems you just never ever know with these diseases. Used to be a very hard working woman, no problem. Now I still am hard working but am limited know matter how hard I try. Still try though and still working! Stubborn. Hope this helps.

Kim – My rhuematologist sent me to a pulmonagist to get a baseline assessment because apparently RA can affect all internal organs. I didn’t have any issues, but still have to go mince a year to make sure no issues. Seeing she HAS symptoms she needs to tell rheumatologist at next appt. my doc is great cause he gives me names of specialists who are familiar win RA so they are up on our issues. Good luck!!!

Shellis – Yes. That’s how I found out I had RA.

Eileen – I have had pleurisy several times due to RA .Also I cannot take Ibuprofen or naproxen because of problems breathing while I take them .

Cindy – I did but they said it was because I had a reversed aorta and extra branch wrapped around my esophagus and trachea…I had heart surgery a year ago but still suffer from shortness of breath and indigestion.

Rhoda – I had rapid heart rate before I had RA and was told that was probably the start of my RA

Sharon – My shortness of breath started two yrs ago and got progressively worse. First thought it was cause I gained weight. Then thought it was my RA. Well, it was a heart attack symptom along w other symptoms that were masked by my RA. Its been a year since my heart attack and stents were put in. NO shortness of breath since! Even with nodules in my left lung. So please consider a cardiac visit along w the many others we need to see every time something happens. God bless 🙂

Linda – I experienced this in Dec and went to my pulmonologist and he tested me for blood clots in my lungs…..was immediately admitted with multiple blood clots in each lobe of both lungs. He said that people with Rheumatoid is predisposed to blood clots. So please have them to check this out too.

Carol – Well, obviously you can see we all associate the shortness of breath with our RA. I was diagnosed with COPD. (it is a term that covers a lot of ground). My new Doctor is treating it as a Lung Disease until he gets further information. Definitely RA related. Inhalers, Advair, Provent, singular, multiple times with Bronchitis and pneumonia. Pleurisy is very painful and can be another problem. – – Keep after your doctor – you need to be on something and get some items under control. Having RA opens you up to a lot of other immune diseases. So keep on it!

Nickie – I have had shortness of breath before but usually it only happens around the same time as a bad flare up from RA.

Mona – Wow! I too have been having trouble breathing sometimes, Guess I better make an appointment too..Stress me out, Another thing to deal with this RA

Janet – Shortness of breath is a symptom which many, many conditions have in common. Anxiety, asthma, COPD, heart problems and others. We always tend to think that if something goes wrong with us, it must be our rheumatoid arthritis. But we are no more immune to heart problems, COPD, asthma, then anybody else. I have asthma, and have been treated in the hospital and in the doctors office for shortness of breath a number of times over the years. My asthma actually predated the rheumatoid arthritis, although since they are both autoimmune issues, it’s probably a little picky to try to parse them apart. But the shortness of breath that landed me in the hospital? Anxiety attack! So you just never know. A doctor’s workup is necessary to find out what’s wrong.

Alanna – You can also get nodules, ct scan can confirm that. Forgot to mention it in the previous post. I have had those for years. Asymptomatic until just recently.

Vee – I was DX with Interstitial lung disease 5 years prior to my RA DX. The pulmonologist was thrilled to hear I had RA. Gave him a reason for the lung scarring! Amazing how it manifests slowly and without a clear pattern for the medical folks to follow. When ever I’d say something bothered me my rheumy would say it is part of the disease. It became my mantra. I can survive anything as long as I know what it is. Now trying to get a handle of being pre-diabetic. Going walk to Hawaii if necessary. Gotta give up the couch and all the pastries.

Reva – yeah…nodules in the lung. Its called RA lung.

Chelly – I’ve seen a Dr for shortness of breath and heart palputations they said it was the Prednisone but Rheumy don’t want to take me off

Lindy – Now u that u mention it I often have shortness of breath and sometimes when I’m just sitting doing nothing – would love to hear back what happens at the docs

Lauri – I’ve been admitted numerous times with shortness of breath. A pulmonologist told me to live with it. I do have scar tissue in my lungs from lung hemorrhaging. They couldn’t find any other reason. It was VERY frustrating cause I could physically feel myself not being able to breathe but my saturation levels were always in the high 90’s. I felt one thing, my tests showed different things. I hope they can help you.

Dianna – I have rheumatoid Lung Disease in its most severe and rarest form, if the member wants to talk to me about it have her contact me.

Detje – I had a hard time breathing so my doctor did an xray and I have a nodule on my lung. It hasn’t gotten big since it happened but I have to get an xray once a year.

Lucy – I am short of breath, but not sure if its RA or chemo, apparently cancer is aggregating my diaphragm x

Terri – During a flare, I get short of breath walking from the bed to the shower in the mornings.

Tracie – I was diagnosed with COPD a few months after discovering I had RA. I use Dulera, Albuterol by nebulizer twice a day and am on oxygen.

Eve – I have shortness of breath cant do much have to take breaks in between. I had a stress test done X-ray and went to cardio but they couldn’t find anything so I’m not sure if is part of RA or Fibro.

Evelyn – My shortness of breath turned out to be a reaction to my RA med – Remicade. I had congestive heart failure. My system filled up with fluid. I’m still recovering. Whenever you see your doctors talk about ALL your symptoms. You never know what might be important.

Judy – Call your Dr. asap! I agree with Evelyn, “you never know…”

Roberta – In 2009 I was admitted with shortness of breath, chest pains to cardiac ICU–spent 8 days with them filling me full of drugs for each symptom. I was told RA can go systemic and cause pericarditis and many organ issues and when it does it is aggressive and Can mean 2-3 yr. life expectancy. I didn’t like that opinion and since I am stubborn as a mule–I have used diet and integrated medicine to get over each hurdle. Have had no more chest pain in 3 1/2 yrs.but I do get flares of coughing and I sound like I am wheezing at times. I do not tolerate drugs so I juice a lot and make lemon water, do not drink dairy, have gone gluten free, organic and Most importantly I try to lift my spirits with funny movies, and my sustaining faith in God. He made me–He gives me wisdom and grace to take this one day at a time.

Molly – I too get it off and on and I walk frequently (well not so much in the winter), so it’s not that I am overdoing it and then getting out of breath. It usually comes on when I am having a flare and I have never mentioned it since it comes and goes and by the time I see the doc it’s usually gone anyway.

Stephanie – I have idiopathic tracheal stenosis that I believe is an autoimmune issue. As a matter of fact, I am dealing with it right now and am scheduled for surgery on the 22nd.

Nancy – Please don’t wait until next week to see a Dr..respiratory issues can be serious…

Karen – It’s the gluten. 8 days into my gluten free trail and I can breath much better already.

Peggy – Becky …thank you so much. Kind of freaking out right now.

Rhonda – Well I have pleuritic pain from my RA at different times which causes pain when I breathe and shortness of breath. Just 2 days ago I was diagnosed with acute bronchitis due to my RA flare. I have no cold symptoms whatsoever. I also have controlled asthma.

Connie – One of the side effects of pain meds needs to be checked out

Jo – Lots of various causes for SOB. I was diagnosed with RA in 1963, at nearly 4 years old. I had Pericarditis in 1976. In 1998, I was diagnosed with Rheumatoid Lung. Seems that it’s usually lumped in with Interstitial Lung Disease any more. I am on a steroid inhaler on a daily basis. If I have a flare (joints or lungs) I get Prednisone. Yes, these are all serious, scary problems. But it’s not all gloom and doom. It’s not an automatic death sentence in a few years time. Keep your appointments, have your tests, take your meds, and pay attention to your own body. You know yourself better than your doctor does! Do what you can to keep your sense of humor. This year is my 50th anniversary with RA. I plan to be around for a looong time.

Lisa – Jo…….I to have ILD/rheumatoid lung. I found out about a year ago and I have been feeling the doom and gloom. I am seeing the Chief of Pulmonology at Temple in Philly. He put me on Cellcept it seem to be keeping the scarring at bay. Thanks for your positive outlook.

Danny – I do sometimes

Caroline – I HAVE RA, DR THINKS MY BREATHING PROBLEMS MAYBE DISEASE ANXIETY. RHEUMY DR SENDING ME TO CARDIOLOGY FOR A 24 HOUR HEART MONITOR AS HAVING LOTS OF HEART PALPITATIONS.

Laura – Autoimmune issues can manifest in many ways, sometimes as pulmonary fibrosis which could be the SOB symptom you are experiencing. Talk to your doctor!

Patricia – I thought it was because I’m so deconditioned, and I guess mine could be…

Shannan – I have a rare form of rheumatoid that attacks my organs as well. Get to your doctor for more or higher dose meds. I’m on enbrel and my breathing is so much better.

Catherine – SHORTNESS OF BREATH HAPPENS OFTEN WITH ME AS WELL… I WAS NEVER SHORT OF BREATH UNTIL DIAGNOSED WITH R. A. in JUNE OF 2012. MY doctor believes I have had this much longer as well . I am on METHOTREXATE on FRIDAYS and ENBREL SHOTS EVERY MONDAY.. It is when I take the METHOTREXATE THAT I GET BREATHLESS… I have a SIBLING who has had R. A. MUCH LONGER than me.. Like 12 years….You also need to make sure that YOU ARE NOT ANEMIC???? It can HAPPEN SO FAST on METHOTREXATE… STAY POSITIVE and FIND A GOOD NETWORK OF FRIENDS AND FAMILY and PLEASE TELL YOUR DOCTOR ALL OF YOUR SYMPTOMS… KEEP A DIARY DAILY IF YOU CAN……GOD BLESS CATHERINE:)

Lynne – I was having the same problem with extreme weakness. Turns out it was anemia. We’re in the process of finding the cause.

Shirley – I too have it and blue around my lips. Dr says I am not getting enough air, Duh.

Denise – yes, reoccurring pleurisy… shortness of breathe, severe pain in my chest, shoulders and shoulder blades. very very weak. put on prednisone and oxygen when i have flare ups. its a horrible struggle…. rest as much as you can, listen to your doctors & try to stay positive!!

Peggy – @Lee if you are getting blue around your lips, you should be checked for pulmonary hypertension immediately!

Nikki – I have pleurisy just found out…how does someone cope with not being able to breathe fully? Please help!!!!

Rachel – That is what happened when I took Methotrexate……couldn’t take it affected my breathing

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