RA with breathing issues

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asides
Regular Member


Date Joined Jan 2016
Total Posts : 30
   Posted 6/20/2016 1:28 PM (GMT -6)   
Can anyone offer information on breathing issues with RA?

I've totally lost my voice, breathless, and my chest aches on deep breathes thanks to mild coughing. I've had a tightness in my chest for months but it was blamed on the black mold I found in my rental house, I've since moved out and the breathing issues have turned into asthma like symptoms with me reacting to any trigger, smoke, perfume, ect. This week I've been mostly mute for several days but no throat pain.

I've been to my GP, an allergist, and see my Rheumatologist in two weeks but so far all my test results are normal. I had swollen lymph nodes and low grade fever so was put on antibiotic, low dose prednisone, and given an inhaler. Even with all that I'm still mute and breathless.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/20/2016 1:46 PM (GMT -6)   
You might be having acid reflux into your lungs. Do you have heartburn?
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

asides
Regular Member


Date Joined Jan 2016
Total Posts : 30
   Posted 6/20/2016 1:48 PM (GMT -6)   
No, I don't have heartburn.

celebrate life
Veteran Member


Date Joined Dec 2014
Total Posts : 2066
   Posted 6/21/2016 11:45 PM (GMT -6)   
Sounds serious. Can you get a referral to a pulmonary specialist. If you have severe asthma, you will want to get proper treatment.

asides
Regular Member


Date Joined Jan 2016
Total Posts : 30
   Posted 6/22/2016 5:13 AM (GMT -6)   
I have an appointment in two weeks to see Rheumatology and Pulmonology. I'm going on two weeks now with no voice and breathlessness, feels like my throat is swollen. I've had chest tightness for months but it was passed off as allergies by my GP.

Don_D
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Date Joined May 2013
Total Posts : 548
   Posted 6/22/2016 7:58 AM (GMT -6)   
Sorry to hear you are having a rough time. I have been having breathing problems as well but mine appear to be related to increased pain levels of all things. I have a hard time catching my breath because of it but my CT scan showed no issues related to RA in my lungs which was a relief.

Because RA is systemic it can also affect your lungs and other organs and should be taken very seriously. I am surprised that your Rheumy didn't send you for a scan when you started having problems.

I hope you feel better and everything checks out OK. -Don

asides
Regular Member


Date Joined Jan 2016
Total Posts : 30
   Posted 6/22/2016 8:32 AM (GMT -6)   
My chest x-rays have been clear and it was assumed to be part of the allergies I was having with the mold exposure since I was having full body hives and allergic reactions for several months. My pulse stats are normal and I did a pulmonary volume test when all this started and that was normal.

It's more that I can't afford the out of network Rheum so I've been waiting on the appointment I have with my new in network Rheum, that appointment is in two weeks.

MarleneF
New Member


Date Joined Jul 2016
Total Posts : 12
   Posted 7/28/2016 12:13 PM (GMT -6)   
I have asthma, which is normally under control, since I had allergy shots back in the early 90's which probably triggered RA. But I digress!

In 2009 I had my foot reconstructed and I had to go off my Biologic. I could have stayed on mthx, but my liver was going crazy, so I went off of it. Within days of the surgery, the pitch of my voice started lowering. A musician friend really noticed it. Then I started having trouble swallowing and eating. Then it became difficult to breath. I could no longer speak a word! (That was worse than RA, I think, LOL!)(Thickening of the vocal folds caused the pitch to lower. Think double bass, or tuba - big to make low sounds)

I have a cousin with RA, and she had been through this very thing. Except she was only about 3 feet tall, because prednisone stunted her growth as a child. So she had a very small airway. She went to the ER, where she stopped breathing, died, and got revived (This is serious!!) They put a trache in, and she has it permanently. They finally figured out she had an RA nodule in her throat. She was only taking prednisone as she is addicted to it, with no adrenal gland function. I suggested she should be on mthx, and her rheumatologist said, "I never thought of that!" and put her on it. She has had no further throat nodules.

Back to me, I was back on my RA meds, and gradually the throat seemed to get better - the meds were working. But I take a cortisone inhaler for my asthma, and my voice got worse and worse again. So I got my rheumatologist to refer me to an ENT. I got in within days, and he said there was a definite thickening in my throat, it might be cancer. I got referred to a hospital ENT in case I needed surgery. The hospital ENT did a throat scope, and found a large white lump in my throat. He thought is was cancer, and wanted to do a biopsy. By that time, I was running a yeast infection in my mouth, and I wondered if maybe the RA nodule might have caught the cortisone as I was breathing the inhaler in, and the yeast colonized the nodule on the surface. So I got Nystatin and rinsed my mouth and gargled deeply.

When I went back to see the hospital ENT, he said the whiteness was gone. I told him the Nystatin got rid of it. He was unconvinced! But the nodule was still there, but much smaller, so he told me I probably didn't have throat cancer. Well, I had already figured that out myself.

I am a musician, and when I was finally able to speak again, after many months, I started to sing again. I notice that the A and B notes in the middle of the staff still were not there. (That spot is where the nodule was, and those notes resonated on that spot!) I could sing high easily and low. I think it took a year or more before I could sing those notes, and I never recovered the quality of my voice. Sigh!

As for lung breathing issues, be careful of Rituxan. It causes some kind of enzymatic reaction in the lungs. I know people with asthma that had one set of infusions and then went off totally. Another lady took 6 years before the breathing issues were out of control.

I was really into exercising, and I went out riding my bike a few days after my first Rituxan infusion. I was on the flat a block from my home. I suddenly was radically out of breath, even though I was riding up to 35 km every other day. I kept pushing, and got some air flow back, but after months it became obvious that Rituxan was causing the problem. Still, I didn't want to switch meds, so I kept on pushing my now much slower bike rides. But when it got to the point where I had to rest after each step I took up from the basement, I was finished with Rituxan.

I did improve a bit, but 6 years later from when I started Rituxan, I finally feel like I can breath again. In the winter I went out riding and even a slight 2% grade just killed my lungs. And certainly, my flute playing has improved radically as the lungs have improved. That is over 3 years since I quit Rituxan. But that doesn't happen to everyone, just a warning for people with asthma who are really struggling to breath and they are on Rituxan.

Sorry for the long post.
"More than that, we rejoice in our suffering, knowing that suffering produces endurance, endurance produces character and character produces hope. And hope does not disappoint, because God's love has been poured out through the Holy Spirit who has been given to us." Romans 5:3-5

asides
Regular Member


Date Joined Jan 2016
Total Posts : 30
   Posted 7/28/2016 12:18 PM (GMT -6)   
I was informed I have a thyroid nodule that is pressing on my voice box and throat which is affecting my breathing. Waiting on an appointment with Endocrine now but so far my doctors have been very hands off, not wanting to deal with it once they proved that my lung function was normal.

So in my case it's not a rheumatoid nodule but thyroid instead. I still have a lump in my throat when I swallow and lose my voice randomly. I've also noticed a change in my voice when I sing, added roughness and certain notes are off pitch and i have to consciously adjust them.

Don_D
Veteran Member


Date Joined May 2013
Total Posts : 548
   Posted 7/28/2016 9:25 PM (GMT -6)   
I am glad they figured out what it is asides. Now they can treat it and get you back your breath and voice I hope! I know what you mean about Docs, this sounds like something that they would definitely want a specialist working on though.

I hope that your Endo Doctor is wise and is able to help you find some relief from this. I will keep you in my prayers asides. Hang in there and keep your chin up. -Don

RNwithRA
Regular Member


Date Joined May 2013
Total Posts : 57
   Posted 8/25/2016 5:57 PM (GMT -6)   
Shortness of breath in a patient with RA can be related to a number of causes. Methotrexate can cause interstitial lung disease, the hallmarks of which are: shortness of breath, increased respiratory rate, decreased PFT (pulmonary function test values) and frequent dry cough. Severe cases can result in pulmonary hypertension and ultimate right sided heart failure. This is not reversible. High dose steroids are needed, or Imuran, Cytoxin etc. Severe cases may require lung transplant and life long immune suppression. Pulmonary hypertension can be treated with continuous Remodulin infusion via implanted pump (very expensive and tough to get).

Rituxan can cause a chemotherapy induced cardiomyopathy (and lead to heart failure). Symptoms are: shortness of breath, fatigue, low grade fever, dizziness, chest pain (in some cases), tachycardia (rapid heart rate) and tachypnea (rapid respiratory rate). There are some drugs that can help alleviate symptoms. Severe cardiomyopathy may require heart transplant and life long immune suppression.

Cessation of the offending drug therapy is mandatory for either of these.

Rheumatoid pulmonary disease occurs most frequently in men with severe longstanding RA. Pulmonary nodules can be present. Shortness of breath can ensue. Treating the underlying RA is the best course of action.

The take home message from an ICU nurse of 25 with RA and interstitial lung disease: shortness of breath in any rheumatological patient who has been treated with MTX or Rituxan should not be taken lightly. Have a full pulmonary and cardiac workup STAT (now).

asides
Regular Member


Date Joined Jan 2016
Total Posts : 30
   Posted 8/26/2016 6:05 AM (GMT -6)   
@RNwithRA,

I had a full pulmonary work up but wasn't on any methotrexate or immune suppressants at the time. Everything came back normal. I'm now on Plaquenil but my doctors think the breathlessness is from my thyroid, not my lungs. I see endocrine at the end of the month and hope they can pinpoint what's going on.

Thanks for the info since it might help others.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9657
   Posted 8/26/2016 8:24 AM (GMT -6)   
Make sure to see your eye doctor while on plaquenil, expect load of bloodwork from the endocrin doctor, fasting and non fasting, and a brain mri...the brain mri rules out tumors I have a beign pituatary gland tumor which is cause by prolactin and so I'm a medication that helps treat that.
Please keep us posted and you have my prayers and well wishes...
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* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
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asides
Regular Member


Date Joined Jan 2016
Total Posts : 30
   Posted 8/26/2016 8:27 AM (GMT -6)   
Yes, I'm trying to get the Eye appointment next month. I already need a new pair of glasses so they at least have my base line already from the last few years.

I already had a CT of my neck with contrast that found the thyroid nodule so an MRI can't be worse, as long as I get it done by the end of the year most would be covered by my insurance.
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