Cricoarytenoid Arthritis in Rheumatoid Arthritis, Part 1
This is the first part in my series RA is Complicated: “Complications” of Rheumatoid Arthritis
A Rheumatoid Arthritis symptom you don’t hear much about
Did you ever have déjà vu? How about déjà vu over and over? A couple of days ago, I met yet another person with Rheumatoid Arthritis who thought she might be the only one who experienced voice loss due to RA.
Why does every RA’er I meet with vocal cord (cricoarytenoid) arthritis feel like they are the only one? You just don’t hear much about this symptom of Rheumatoid Arthritis? Why are we so quiet about this?
Are vocal cord problems due to Rheumatoid Arthritis really rare? You can find lots of websites and literature which say that vocal cord arthritis due to RA is atypical – where you can find it mentioned at all, that is. Usually, it is not mentioned.
So, how common is cricoarytenoid Rheumatoid Arthritis?
Very. Some “arthritis” materials estimate the rate of cricoarytenoid involvement to be anywhere between 17 and 75%. No wonder people are confused. At least 35% of RA’ers complain of hoarseness, a common symptom of cricoarytenoid RA.
But wait! Post mortem studies range from 45 – 88%. I have read a couple of journal articles which find autopsy evidence of laryngeal Rheumatoid Arthritis in 87% of patients. An American College of Rheumatology report found that 7 out of 8 RA patients showed histopathologic changes postmortem. They stated, “Arthritis of the cricoarytenoid joint occurs much more frequently in patients with rheumatoid disease than has generally been suspected.”
What can Rheumatoid Arthritis do to the vocal cords?
Rheumatoid Arthritis can affect the larynx in several ways. There are joints amid tiny bones (actually made of cartilage) called the cricoid and the arytenoid within the larynx. Oddly enough, the joints are called the cricoarytenoid joints.
These joints can be attacked by Rheumatoid Arthritis, just as other joints can. Sometimes, RA creates an erosive mass in the joint. Nodules may form on the vocal cord tissues which are similar to nodules on other joints. Inflammation in the larynx can lead to vocal cord fixation or vocal cord immobility.
Other types of systemic autoimmune arthritic diseases such as Ankylosing Spondylitis, Reactive arthritis, and Sjögren’s syndrome can also lead to these conditions.
What RA symptoms occur in vocal cord RA?
Here is what to watch for:
- hoarseness
- change in range of voice
- pain during speaking
- pain during swallowing
- feeling of fullness or mass in the throat
- choking sensation
- shortness of breath
- difficulty breathing
Weird but true facts about Cricoarytenoid RA symtoms
Symptoms may be acute or mild. They may be intermittent or persistent. Symptoms do not depend upon the duration or severity of the Rheumatoid Arthritis or on the age of the patient. Swelling or redness may or may not be observable during laryngoscope. It is even possible to have cricoarytenoid RA without observable symptoms.
Other types of pain
Rheumatoid arthritis in the cricoarytenoid joints is not always physically painful. However, not being able to speak or sing can be traumatic. It is also frightening to live with intermittent choking or difficulty breathing.
There is a lot more to tell you about RA in the larynx! Read Part 2 to this series on cricoarytenoid Rheumatoid Arthritis.
More links to articles referenced in this post
Intensive Care Medicine Journal
Oxford Journal of Rheumatology
Recommended reading:
- Is there a blood test for Rheumatoid Arthritis? Part 1
- Functional Measurement of Rheumatoid Arthritis
- More articles on Cricoarytenoid Arthritis in RA
- 3 Reasons to Stop Saying “Complications of Rheumatoid Arthritis”
Have you ever written down your Onset Story? Tell the world how your RA began.
When I flare hard I experience problems with my voice. I get very hoarse and find it difficult to swallow. My mornings are horrible for trying to swallow and usually have to wait about 10-15 minutes after I get up to swallow my morning handful of pills.
So glad you wrote about this because not many people are aware that it is a legitimate condition for those of us RA. We need more recognition of this condition.
Yes, I do not know why! It seems so serious…
I have lost my voice for days or weeks at a time – either gone completely – just a whisper.
But other times, for a few weeks, it is just very weak or high and quiet.
That is no fun, but choking and struggling to breathe is scarier. That made me tell myself never to go off my meds… :pain:
I am crying right now.
I am a singer.
I sing professionally and am struggling with what I thought was just my medication however I HAVE these symptoms.
Yes, I will fight it for as long as I can but total devastation is what I feel right now.
Dear Elle, for most people these symptoms come and go. There will be times, probably long times when you can sing. Please try not to expect the worst!
I have RA on my voice box they gave me a Nebulizer Compressor I breathe every 3 to 6 hrs I would wake up at night grasping for air. Unable to breathe/ Also recent they did a endoscopy to stretch esoughgas didn’t work. So now they want to do a sleep apnea test. I don’t have trouble sleeping just breathing. I’m going to call my doctor tomorrow to discuss cricoarytehoid. I know I have alot of these systoms. I hope this information helps.
Good luck Romie. I hope you find a dr who can identify what’s going on with you. That must be so frightening.
Thank you for the article, very interesting. I have had RA for one year, first flare lasted 7 months. I now believe that I am experiencing my second flare. Interestingly enough, my voice is hoarse, I am having difficulty swallowing and my neck/throat is very painful. I have had swollen/sore glands for over a month that have recently worsened. Right now I have my neck/throat coated in Tiger Balm. That didn’t provide enough relief so I soaked a tea towel in boiling water, let it cool a bit then wrapped it around my neck. Voila-it worked like a charm and my neck/throat is soothed.
During my first flare I found my voice was weak. I assumed it was simply from being so weak and fatigued in general but now I know differently. I remember my rheumatologist when diagnosing me asking about hoarseness or weakness of the voice but he didn’t tell my why even though I answered positively to the question. I am learning so much more on this web site! Thank you so very much Kelly for all the good research you do. 🙂
Jamie
Jamie:
What a neat idea. I know for me, heat is such a comfort to a flaring joint. (Some prefer ice!)
If the problem persists even when your RA is being treated with DMARDs, maybe you could ask your Rheum. dr. for an ENT who knows about this problem. Most don’t seem to know much about it.
Thanks for your kind words. 🙂
Thank you so much for this article. I now am wondering if symptoms that I thought were unrelated might be part of this monster after all.
WS:
You’re so welcome! Can’t wait until tomorrow’s post. I don’t want anyone to go through…
I never knew our voice could get hoarse from the RA, I have had it for 5 years and have never come up horase? Is this something that is going to happen to me? Sheesh, could someone please answer this for me, that sounds scary, losing my voice……over this- even it if is temp- that is sad
Hi Viesta,
The most current research I’ve read says this: RA affecting the larynx is common. However, many have not complained of symptoms. So, they say actual symtoms are not as common. I think that may be because people do not know to connect the voice problem to their RA AND do not want to announce one more “weird” sounding symptom to their docs.
NOT everyone will be affected by this, but it IS usually intermittant and the more dangerous symptoms are more rare.
Please try not to worry. I just want to make folks aware – just in case. But, I know how you feel – that’s how I felt when I read about jaw RA (it’s in the Onset Story).
Oh I appreciate it Kelly like you don’t know, I come here everyday to read what you have written, it is important to me to have a person like you stand strong and speak for a lot of us, you have sound facts, you present them well researched and it does me good to know I am not alone out here with this battle of RA… I learn so much every time I read, ex: I never knew until I read it that fibromyalgia is a form of RA… so please keep up the good work Kelly, we need you~
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I just came across this in my research a couple of weeks ago. I had never heard of it up to that point. Interesting information, thanks.
I have mentioned to my PCP and rheumy on several occassions about my voice and hoarseness. I too have difficulty swallowing, feeling of fullness in my throat, and sometimes even have my voice crack and leave for a min. or 2. Both have said its due to RA. The cartilidge has become erosive. Neither of them seem too concerned. They are just chalking it up to RA.
And finally I read this….
I have PsA and my joints flare pretty much like those who have RA. Two years ago I had simple outpatient arthroscopic surgery on my wrist for tenosynovitis. I came home and six hours post surgery I started gagging – it was awful. I had a wretched sore throat suddenly, too. I called the orth surgeon who confirmed that I was NOT intubated, so that could not have been the cause.
Long story short, I gagged and gagged and hardly ever slept for more than two hours at a time for over three weeks. Trips to UrgentCare were unavailing, but then a Z-packed seemed to kick in. So I figured I had some kind of bacterial infection. [Odd because my WBC wasn’t elevated.]
Determined to get to the bottom of this, I saw an ENT, who suggested Cricoarytenoid Arthritis. Then I saw my Rheumatologist – who really does know everything about this branch of medicine, or so I thought – and he blew off the ENT’s suggestion.
About 8 months later, out of nowhere, it happened again. I was in a huge PsA flare at the time and had 5 steroid injections in various joints…….which magically cleared up the gagging. Overnight.
I went back to the ENT and asked him if the Kenalog did this and he said with that many injections at one time, it was possible. This time he wrote out an Rx for low dose cortisone to take the next time this happens.
I should mention that before the last attack I had terrible pain in my shoulders and neck. An MRI didn’t show anything unusal around the area of the larynx. [Were they paying attention?]
It’s the most horrible thing I’ve had to go through with autoimmune disease and I’ve been through the gamut.
But one humorous thing about this: my voice was so low and gravelly for a month or so that friends would tell me that if all else fails, I probably could get a job with a phone sex company. [Just kidding.]
Thanks for posting the articles about this form of inflammatory arthritis. For a long time I really thought I was the only one this was happening to. What a relief.
I know this was published a while back, but I just read it for the first time (from the link on your latest post). I just want to thank you for writing about this symptom. I had no idea that during my first flare (around the time of my diagnosis and while I was still getting my RA under control) all of the issues I was having with my voice were due to RA. For months, I couldn’t sing, and I’ve always loved to sing if only in the privacy of my car. I constantly sounded like I had a cold. And I would frequently get that “fullness” in my throat that is so hard to describe without sounding crazy! I don’t think I ever mentioned it to my rheumatologist because I had no idea it was related, and he never asked me about it. Thank you for educating us and I hope that some rheumatologists out there read this and start factoring it in to the symptoms they inquire about with their patients.
I think what you describe may be the reason it is thought be many rheumatologists to be rare, even though scientific evidence says it not rare.
It is risky to share with the doctor things that you know may sound “odd.” He could scoff at you and this could affect the way he sees you from here on in. I have done the same. This is not our “fault” & we need to remove the stigma from being able to name our symptoms – sometimes for our survival.
Wow! Thank you so much for this article. I have been sent to a pulmonologist recently because I keep feeling short of breath! They were telling me that everything was fine, that maybe its the intercostal spaces being inflamed by the RA. I had asked to be seen by an ENT because of problems swallowing, especially in the morning when I wake up. Now it makes sense! The hoarsness, the swallowing in the morning would go along with my morning stiffness. I’m going to print this article and take it to my new Rheumatologist. Thanks again. You help me everyday. ( some of these other things sound familiar too) I’ll let him put it all together and see if this is my problem. It’s very scary. This disease has affected every part of my body. It is relentless.
Sharon, I hope you will print a couple of the articles linked in the post too. (Links are in blue.)
Yes, CA is scary. And there are things RA can do to the lungs too as you mention – so I hope they get to the bottom of it in case it can be treated.
Relentless, yes. My neck is so bad tonight.
Wow,wow,wow..this was a light bulb moment for me..this exact thing was happening to me BEFORE i was told I have R.A. I had been having problems with hives,I always just thought it was the freakin hives..The hive problem started out of the blue and got worse and worse,sometimes bigger than a dinner plate,lips face feet eveyplace you can think of..5 years of this..then R.A hit..I asked every doctor about hives in relation to R.A..but no information..but the throat thing was the worst..feeling like I had a jawbreaker with spikes stuck in there was beyond horrible..gaging and feeling like i was choking..I always able to beath tho and never had my airway close up on me..when i started my meds it ALL went away..its all connecting for me now..
thanks so much
Kim
Kim, the hives & rashing with RA are sometimes mentioned, but not every patient has them. However, the CA in RA is extremely well documented. So why do so few docs seem to know about it? I dunno. Best of luck to you.
You have no idea how much this has helped me. Thank you so much for all the time, energy and efforts you put forth to get this kind of information out there. There is still so much I don’t know, but I think I’ve learned more in the few days since I discovered your site than I have in the whole two years since my diagnosis.
That’s great to hear, Melissa. Glad to have you aboard. Let me know if I can help you find anything.
Very interesting reading the comments. I had a very hoarse voice and a lot of difficulty swallowing. I found I always had to have a glass of water on hand to wash things down with. That has now stopped and my voice is back to normal since Humira. Also in regards to Kim’s post- I have the hive thing going on even a little bit now. No big hives but just the odd small one here and there. I remember before I was diagnosed I was sitting at my desk looking all over for a spider convinced that this must be what was getting me……if only it had been a spider lol.
Lisa, I remember thinking the Parvo Virus (fifth disease) was a spider bite – it was red & so painful on my spine where it was inflammed. Then, it moved to my other joints & that was scary. Really messes with your mind sometimes.
Did the hives improve with treatment too?
Oh my goodness!! I went through test after test when PCP was concerned with my chronic voice issues. I was tested for ulcers, had a barium swallow done, finally an endoscopy where the stretched my throat—apparently it was “too narrow!” It seemed fine for the previous 25 years!! 😉 I saw an ENT, a gastro Doc, and referred to a Speech therapist with a specialty in “voice use”– none of my docs knew a therapist with this specialty, so I never saw one. My RA Doc was aware and never mentioned it could be related. I had a feeling it was, but everyone seemed to think I was crazy! I was told I must be yelling a lot…I teach kindergarten but anybody who has been in my room always comments on how quiet I am and in turn my kiddos are. Eventually, I diagnosed with some allergies that were aggravating my throat & voice. Avoiding allergens has helped the severity of my hoarseness and reduced the choking and lump in throat feeling. But my voice is different…am frequently asked if I am “feeling better” or “getting over that laryngitis?” It comes and goes and
I usually don’t notice anymore but trust me it’s there…. listening to my class sing The Wheels on the Bus (which I had taught them) was an eye opener or should I say an ear opener :0 Oh my! Sorry kids!!!
Sorry this turned out so long but I wanted to scream “I knew it,” when I read this. Thanks!! 🙂
Hi Crystal! I went through that WOW moment on this a couple of years ago too so I know what you mean. Did you read parts 2 & 3? You’ll get to Steph’s story about how she couldn’t speak for several years. She went through similar things as you. This is a common symptom of RA so I don’t have any idea why docs act like they haven’t heard of it??
I am interested to know how they can diagnose the arthritis in the joint as opposed to RA nodules on the vocal cords which is what I have been diagnosed with. My rheumatologist had never heard of it. I am a music teacher and my voice is terrible. I cannot lose my job; I am exempt from disability for RA.
Hi Carol, I don’t know what the exemption means. But it’s not always easy to tell the difference between the nodules & inflammation of CJ. A good ENT uses a fiberoptic camera and goes thru the nose into the throat usually. If he can see one or the other, he can know for sure, but it can be tricky to get the dx. I do think there are ultrasounds too. Can you get to a good ENT who knows about CA?
I guess my ENT is good; he was able to see and diagnose the nodules on the cords and determine that they were caused by RA. I see him tomorrow and I will ask about the joint issue. By exemption I meant that if I have to stop teaching because I lose my voice and the issue is RA then there is no salary continuation at all. I need to continue at least another 10-15 years. Hope I can stop these voice issues! Thanks for your help!
Wow…what an ahah! moment for me. I have had to have cysts on my thyroid drained 3x in the past two years so thought the swollen, gagging feeling was linked to that. Recently though I noticed it is worse when I’m flaring. Sometimes when I turn my head to the side and swallow at the same time something ‘catches’ in my throat and I feel like I can’t breathe, and I can’t turnmy head bak around. It is so painful and frightening. This happened yesterday when I was alone. Very scary. No wonder my rheumy always checks my throat carefully but she never explained why.
Molly, this can be hard to detect unless you have nodules or swelling that can be seen at the moment you are examined. Sometimes, an ENT can do a better job with a fiberoptic camera. How does your rheumy check?
yeah, well, I was wondering why I couldn’t sing over the last few weeks…. and my collar bone area has been so sore even my blouse against it is painful
I’ll mention it to my rheumy but he doesn’t seem very interested in my complaint list
thanks AGAIN Kelly for the info….you ROCK xo
Hey, Jen. I hope your voice gets better. “He doesn’t seem very interested in my complaint list” is disgusting. I’m just sick of that.
Please look out for yourself if this gets worse & try to see an ENT if you are concerned.
thanks kelly:)
fyi: I’ve received much more info and validation on your blog than from any doc….WISH I wasn’t facing the unending task of dealing with them UGH
YOU are a light~love you, love your blog……hope you’re doing ok today xoxo
oh & btw I’ve been given physical therapy referrals and I will be asking about ENT next 🙂
Thanks so much Jen. I’ve been traveling so I’m just catching up.
well was just catching up and noticed it’s been a year since my throat has been under attack…wow a year already 🙁 time flies when you’re not having fun too!! haha
my rheumy did send me to ent and i have had several scopes showing nodules and swelling
and have been receiving therapy from an amazing larynx therapist. she has done all types of massage and even MOVED my larynx a couple of days ago…VERY SORE but still relief from how it was. a little easier breathing but very hoarse.
she also focuses on different levels of massage and you’re right kelly there are a ton of little joints etc all through your throat/jaw etc as well as all the muscles/tendons etc which get so tense from the strain.
she is always trying to have me focus on the goal of my speaking feeling “easy” ……not there yet but improved somewhat… on some days 😛
oh…BE CAREFUL massaging your throat area there are arteries and you CAN make yourself passout…she’s always warning me about that too…
I have learned the habit of having water on hand at all times to keep everything as hydrated as possible. and there are even breathing exercises and posture that will help. yawning helps put things into a natural state of relaxation. I also have been using ice/heat like the others commenting here. somehow God landed me with a therapist that understands what’s going on (along with the vocal chords i have also had trigiminal neuralgia, bells palsy blah blah) and I’m traveling to Seattle for treatments (an all day trip for me and whoever gets sacked with me for the day haha) anyway just wanted to share that therapy can help if you can get it……xo
ra has also decided to attack my eye sockets…heard of that one? it’s extremely unpleasant ..swelling/bruising huge doses of steroids…still just trying to get it under control about 2 weeks into this one…
take care all ♥
Greetings – and thanks for your work on this website. It has been helpful to me. I am a radio announcer who has this disease. I was put on steroids, which cleared up the problem very well, but as you know, you can’t stay on steroids…so when they stopped, the problem returned. Looks like the end of my career. At least I got to do… what I really wanted to do!
George
Good to meet you, George. There may be other RA treatments that help your voice symptoms, so I hope you won’t give up. Also, many patients use low dose steroids for a long period if nothing else helps. You might want to read about that here – click here. It’s a decision to weigh for risks & benefits. There is also a tag on the tags list for prednisone if you want to read more. And all of those posts have comments pages where you can hear from other patients about their doses / experiences. Good luck!
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Thank you, thank you so much for speaking out and informing people about this aspect of RA that can be overlooked. For me, it was my first symptom, predating my diagnosis by over 6 months. Suddenly, I had no voice, or a horrible scratching, hoarse, low voice that continued for the entirety of the 6 months prior to my diagnosis. You are so right about how traumatically difficult it is to suddenly lose your ability to speak, sing, swallow, and all the pain associated with it. All the while, without a diagnosis wondering, what in the WORLD is wrong with me! People around you constantly asking “What’s wrong with your voice?” “Are you sick?” “You should see a doctor” etc… which at first doesn’t seem too intrusive, but after months every comment makes you want to break down and cry! I was an assistant who battled the phones daily straining to communicate with the world of people needing answers, work, my boss etc and it was such a difficult hurdle to overcome. It began my journeys to the doctors, ENTs, specialists, etc who continued to say things like acid reflux, rest your voice, damaged vocal chord, while knowing there was more going on in my body. About 3 months in the neck, shoulder, jaw, lock jaw, elbow, hip, knee pain ALL began to show their signs. But still taking months later until I decided myself to call a rheumy…because doctors, specialists etc only continued to prescribe me muscle relaxers… The voice, neck, jaw issues ended up being a big part of my having to quit my job, which was still 2 months before my diagnosis. All of those symptoms stemming from the Cricoarytenoid Arthritis. Almost a year later and on meds that have finally given me my voice back, it is still my biggest symptom of RA as I wake up every morning with that painful reminder in my throat/voice about the reality of this disease. Thank you, thank you again for shedding light on this overlooked issue!!! You are a blessing!
Thank you Laura. 🙂
I still get this..but not as bad as it was…I’ll never go off meds…having this is horrible..and to date the worst and most painful of all the symptoms of having R.A…I thank you everyday Kelly for this information..Lik I said a long time ago..it was my “light bulb moment”
Kim
Kelly,
Once again, thank you so very much. I don’t know why I hadn’t read the 10 essential things you need to know about RA however ended up there today.
When I read the last item on the list I was surprised. I clicked on the link to read more about Cricoarytenoid Arthritis. Well now I know what has been causing the problems with my throat/voice. I often feel that fullness in my throat ~ it really does feel like there is something sitting in there. As a result I clear my throat often (much to the annoyance of my husband). I’ve also experienced the choking sensation and it is quite scary.
I am certainly going to look into it further, however I am wondering in the meantime if you are aware of any treatment for this. (If its meds so be it, one more in the arsenal won’t hurt!)
Thanks again Kelly 🙂
Wow… I’m newly diagnosed with seronegative RA because of an excruciating episode in my hands. That is what sent me out for tests. I did mention my throat being sore but did not think for one moment that I could have arthritis in my throat. That is amazing. Also, it makes a ton of sense to me. No wonder I feel so friggin beat each time I get up and walk to my car after work. My throat becomes sore, feels like I’ve got a golfball crammed in there, and I feel unnecessarily out of breath.
I have been fighting denial with the diagnosis because I thought a couple aspirin would make my hands feel better….then I recall the surgery two years ago on my crooked toes, the foot pain that felt like I was walking on a bed of nails. No doctor ever mentioned RA then. Now it starts to make some sense.
Loss of my voice and ability to sing affected me more profoundly than the loss of my joints. I have JRA, and had my first knee replacement when I was 25. Since then, I have had several arthroplasties. In spite of all the surgeries I was able to persevere and fulfill most of the obligations of my role as a first grade classroom teacher. Loss of my voice did impact my ability to teach. Projecting my voice caused my my vocal quality to deteriorate further. Being unable to lead my class in singing simple songs, singing “Happy Birthday” or the national anthem felt like a greater loss. I loved singing and felt I had some musical talent. The singing voice i was left with is more of a croak than anything else. I feel embarrassed when I try to sing in public. Few people understand the implications of RA on the vocal chords.
Yes i have had this problem alot! Its really embarrasing becasue people think i smoke alot of cigarettes! I tell them about the joint in our throats but they look at me like im crazy..oh well…I have a problem i hope somebody can help me with!!! Does your doctors go on vacation and you dont know about it! My Rheumy is on vacation for a week and i cant get my refills!! She doesnt tell anyone she isgoing! Now i cant get my meds so that has ruined a vacation i was gonna take! I cant go without my meds so my friends and i are gonna be out of alot of money! Any advise from anyone Please!! Thanks Judi
You should be able to ask the receptionist at your rheumy’s office who is covering while she is gone. Whoever is covering should be able to refill the prescriptions for you.
Option two: Your pharmacist might be willing to front you one week’s worth of meds to last you until your doctor returns from vacation and can approve the refills.
Good luck!
I agree. And I’ve also used an on call dr in such a case. Is anyone on call Judi?
I wish I could go to my rh doctor for everything. Seems like doctors do not know much about what rh affects. I have spent too much time and money trying to find out what my symptoms are……they always lead to rh
Voice, fybromyalgia, raynaud, jaw pain, migraines and the rh all miss diginosed,,,,,than everything is severe.
I have had RA for 31 years and have gradually begun to have problems with my voice. My throat also feels fullness and my voice will become hoarse and I feel the need to constantly clear my throat which becomes annoying to others. The scarriest part is I sometimes feel shortness of breath like my throat is to narrow to get enough air. I am so happy to find this site and people that are experiencing the same problems. I will be seeing my rheumy again in December and will talk to her about this. Also will ask for a referral to an ENT doc.
I was diagnosed just recently – I see a Rheumatologist for the first time next week. I’m so glad to see this post. For about 2-3 years I’ve had problems with soft food – especially breads, cheese/bread, etc. I’ve actually given alot up since I didn’t like the choking feeling. Now that I’ve read most of the comments here, I see that it is probably all related. I too also keep water with me at all times to drink. I just re-recorded my out of office on my phone (last one I had for 3 years), when I played it back on the phone, I noticed a change in my voice – deeper than it had been in the past. I will make sure to bring this up to the doctor next week. Thanks for all the sharing – makes it easier to deal with the diagnosis with all of you out there.
Dear Melody, I hope the appt goes well. You can have a choking feeling from CJ RA, especially if your vocal cords are obviously inflammed so you have lost your voice. But another thing comes to mind as well – if you have secondary sjogrens syndrome, then you may not have enough saliva at times. This can make swallowing hard since the food does not break down as well in the mouth. Just something you might want to discuss with the doc. Voice changes are typical – and they can continue – sometimes deeper or weaker and smaller – or sometimes no voice at all. – Most people find it to be periodic – fortunately. Good luck.
Wow, I never knew this. I am a fitness instructor and use my voice all the time. I have been really horse and thought it was because of using my voice so much. I also sometimes stop breathing when I start to fall asleep. I have had ra for 4 years. HMMMM.
It’s not unusual so it could be. They can examine inside the throat with a fiberoptic lens while it is inflamed or the nodule is present etc, but I also read that it can be missed. I’m sure this is part of the reason that patients say it’s common & autopsies say it’s common, but doctors say they doubt it.
Hi there,
Thanks for writing this. I haven’t read through all the comments yet but I have just lost my voice for the third time in a year. I’m going through diagnostics to confirm RA but am still waiting to see a rheumatologist. Can you recommend any natural treatments that might help me get my voice back more quickly? I am a receptionist during the day and work customer service part time at night so it’s going to be tricky to do my job. The first two times my voice disappeared it was for a week each time. Thankfully, I think it’s usually at the end of a flare so I’m keeping my fingers crossed. I’m hoping it won’t be a week until I get it back again though. Any suggestions would be great!
Hi Allie, I don’t know of anything that can easily bring relief. Since inflammation is often the problem, steroids might help. But you’d have to ask your docs – even if it is RA, it can have various specific causes and should be checked out.
Thanks so much Kelly. I live in Canada and haven’t got a rheumatologist yet and family doctors don’t seem to have any idea what they can do to help unfortunately. My first appointment with my rheumatologist is the end of March so hopefully it will just run it’s course before then! I’m 3 days in to being completely voiceless, although I can usually muster a few words first thing in the morning. I found this a bit odd because with all my other joints, they are worse first thing and then loosen up a bit as the day goes on but my vocal chords seem to be doing the opposite. I’ve been whispering for the past 2 days so today I’m going to try to not communicate vocally at all and just use handwritten notes. We’ll see if I have success with that! Fingers crossed 🙂
I’ve had ra for about 10 years now and this is the first time I’ve ever heard of something like this. Right now I’ m voiceless again. It happens about every month or so. I will get a very sore throat and lose my voice for about a week or so. Saw an ear, nose and throat dr today who believes that it it ra related and not an infection. I never knew tha my voice box could be affected! I will be seeing another specialist hopefully next week and will be able to maybe get some answers. I’m glad to have found this website, thank you!
Trudy, I hope your ENT can help your RA specialist to know if it’s the RA & get the answers you need! Let us know how it goes.
Wow! Thanks so much for the information. I have not been diagnosed with RA, but I have a two month history of hand, foot and shoulder pain, fatigue, and low grade fever, but the doctors I have seen have fobbed me off due to no visible swelling or redness, and normal blood test results (apart from “barely positive” RF and ANA, which they say is quite normal for some people and I don’t need to worry).
In the last week, I have had two instances where I have woken up feeling like I have got a big tablet stuck in my throat. The feeling persisted for the day, easing off as evening approached, and it’s accompanied by swelling over my larynx, to one side. The second time it happened, I was eating dry crackers and a mouthful got stuck on the way down. I sat there terrified, as I convulsively swallowed to get the food unstuck, but knowing that every swallow was going to be absolute agony. The pain with every swallow reminded me of childbirth! Eventually it cleared, and I stuck to soft foods and small mouthfuls for the rest of the day. No way was I going to go through that a second time!!
I had put it down to the anti-inflammatories the doc suggested I take. Regular doses of NSAIDs cause me to get mouth ulcers, after a week or so, and I thought that maybe I could have ended up with an ulcer in my oesophagus, even though the lump-in-the-throat pain vanishes much faster than an ulcer normally would. Now that I know it is a symptom of RA, I plan to jump up and down until I get a referral to a rheumatologist, because the symptoms matching RA just keep on stacking up (my jaw has started up very painfully in the last couple of days, and my knees are making themselves known more than my OA would normally account for).
Thanks for such an informative website 🙂
I hope you find answers you need Kathy! You might need to find an ENT that knows about RA. Do you know if your anti-CCP was elevated? That’s more specific for RA than Rf or ANA.
It is scary isn’t it? I try to remember to take small bites and never eat without something to drink.
Anti-CCP wasn’t mentioned when I got the results, so it was either not tested, or it was normal. The doc mentioned the specific tests (eg. he said inflammatory markers were normal), so I am inclined to think that it was not tested, as I am sure he would have mentioned it, as a normal anti-CCP would have been even more “reassuring” than telling me that 5% of people are positive for RF and ANA, so I shouldn’t need to worry. I plan to return to the first doc I saw, as we can then compare values from early in the year, so that even normal values can be checked to see if they have “worsened” since then. And I will request anti-CCP specifically. Things are getting too scary to “wait and see”, like I have been told to do. You are right in having a drink handy. I was pleased to find that drinking helped ease the pain once the crisis point was past.
Sorry, I meant to say 5% of “normal” people are positive for RF and ANA, without it meaning anything. And I am inclined to try a rheumatologist first, and then an ENT from there. Or maybe go for both at once, so I can rule in/out RA, as well as deal with the throat symptoms.
Very important message for the doctors and patients too. Cos many patients neglect it not knowing the complications. Thanks. Keep the good work going. Regards. Dr.bharam
I think I may have cricoarytenoid joint arthritis. Off and on for 20 months now I get a very painful spot on the side of my voice box and the pain travels up into my jaw and ear. It hurts to swallow, it hurts to talk and my voice goes hoarse. It’s the same every time. It comes on and lasts for 6-10 days then completely disappears. This all started the same time my other symptoms started btw.
I finally went to my GP for it this past February. He said it seemed to be coming from the cricoarytenoid cartilage, just what I was suspecting! He was really concerned by how much pain it was causing and got me into an ENT’s office within a couple of hours. The ENT was a total disappointment, I left his office crying.
He looked me over and said my voice box was inflamed and it must be an infection or virus. I explained that this had been happening over and over again for months. He said it must be a recurring infection you need an antibiotic. I then told him about my joint pain and swelling and told him I was concerned that it may be inflammatory arthritis showing up in my voice box. He looked at me like I was an idiot and said “But there are no joints in the voice box.” That was it, I knew he was going to be no help. He diagnosed me with silent reflux and wrote me a prescription for prevacid and an antibiotic with a smile and with a pat on the back sent me on my way.
It’s been back twice since then. In March it came back but didn’t get nearly as bad but I was on 10 mg prednisone at the time. It has shown up again this morning. It’s been happening literally every 4-5 weeks and I’m getting worried. This is happening way to often and has been getting more painful as time passes.
So I’ll make another appointment with my GP. I do smoke so that is a concern and I know we have to rule out some stuff but I’m convinced it’s related RA.
Hi Jamielynn. I’m sorry that ENT was dismissive and uneducated. Those 2 qualities seem to go together – if he doesn’t really know the answer, he may kind of minimize an issue. Unfortunately, there are plenty of eye drs, ENT’s, or cardiologists etc who don’t even know that RA affects people these ways. You need to find an ent who knows about RA disease. And you have probably seen the research, but smoking does increase RA disease activity so that would probably help somewhat too.
I was very upset with the ENT at first but then figured that if he hasn’t seen it first hand maybe it’s a myth to him or maybe he honestly just doesn’t know about it.
I’ve got a call into my GP’s office to get some imaging done and if the results point to RA perhaps I can be a living breathing example for this guy and introduce him to the world of RA and it’s affects on the larnyx.
Smoking- yep, bad bad bad. Especially with throat issues. That is something I have to come to terms with. Quitting is something I think about often but I need to face the fact that thinking about it isn’t good enough, especially now.
Sounds like a good plan. I guess the problem is that stats say most of us have the larnyx affected but it’s treated as if it’s a rare issue.
Beginning at exactly the time I was first began having symptoms of RA (about 15 years ago), I have had frequent episodes of both jaw pain and throat pain, both occurring most often when I am in a flare, or trying to taper Prednisone. The throat pain for me is often accompanied by hoarseness, and one of the ways I know it is not a sore throat from a cold is that it is often distinctly on one side only. I’m glad to hear you are having more of a work-up because it’s always good to rule out other causes, but I definitely know that these symptoms for me are related to the RA.
Good luck with quitting smoking! I finally quit because of a complication related to RA (after many unsuccessful tries), so if possible, use this as an inspiration to quit now. I’m very sympathetic, it’s not easy, but so worth it….
This has really been an eye opener for me! I was diagnosed with RA about 5 years ago but I had symptoms for several years before the diagnoses. Until I read this I did not know the loss of, hoarseness of my voice plus the choking could be symptoms of RA.
I was told by a neurologist about 6 years prior to my diagnosis it was all in my head, this is literally what she said. I just needed to get a handle on the back pain, foot pain, etc. and I needed to exercise more to help with the fatigue. Honestly, this is what I was told. I thought to myself, I am going crazy and I have got to get a handle on this. Even though there were times when I would craw to the bathroom in the mornings and it was all I could do to put one foot in front of the other.
Allergies were blamed for my voice and still are to some degree.
Finally the RA showed its wicked head for all to see with the disfiguration of my hands and feet. When they first starting hurting I went and joined a gym, exercise is what I had been told. It just kept getting worse with the excerise until I could not drive, walk or move without crying and I am not a crier. I went to my GP, he ran the test, the highest he said he had ever seen. He sent me home with prednisone and an appointment in 3 months (the earliest they could get) with a Rheumatologist.
I had been to an ear/nose/throat doctor about my voice and the choking prior to the RA diagnosis and nothing was found abnormal. I will have this checked again now that I know.
I have been having trouble with my eyes lately and had no idea this could be a part of RA.
Thank you again Kelly for all your hard work with helping us understand our DISEASE.
I have suffered with a strange sore throat and difficulty swallowing that often times makes me gag. It scared me to death when it first happened. I didn’t realize it came from my RA. Thank you for information.
Until recently I had never heard of RA affecting the vocal cords. I’ve had RA for over 11 years, and it was just in April that I started experiencing problems. At first I croaked! Then I could hardly talk. Went to GP and then ENT. Nothing could be seen down my throat, but still hoarse!!! By now my voice is a bit different, not as hoarse, but very soft. I can’t raise my voice at all – pretty much I have one volume – very soft. My rheumatologist said it’s very possibly from the RA, and who knows when it will get better. Certainly extra prednisone hasn’t helped. I’m on 7.5 every day and LARGE doses when I have Rituxan infusions and it hasn’t made any difference at all.
I’ve had RA for over 21 years. I’ve noticed hoarseness over the last few years, but accounted it to allergies or talking too much. I had a flare up about six months ago at which time the hoarseness worsened. In addition I wake up in the middle of the night choking on a regular basis. I was very interested when I stumbled across this article and knew I wanted to bring this issue up to my rheumy. So today was the day and he blew me off. He said he only had one patient that had CA and it was very rare. Thanks for the concern and support. I was so down when I left his office, but then I got on RA Warrior where I knew I could find the support and validation I needed. Thank you to everyone for sharing their experiences so we can try to make sense of out of things that don’t.
I’m sorry you were “blown off” – I know exactly how that feels and it makes me mad for you. The disease is hard enough – being dismissed should not be such a regular part of it.
People are told that CA is rare & not ever told that it’s part of their RA, so few even know to report it. Most do just like you did – try to chalk it up to something else because they don’t know it could be RA and they have much more pressing painful symptoms to deal with.
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Amazing I just found this! I have had my voice change while speaking and gotten hoarse for what I thought was no reason. I am a police dispatcher so I thought it was just from over use. But the worst of my voice problems have occurred in just the last few months. The RA diagnosis was almost a year ago. Wow! Thank you Kelly for this wonderful site I have learned so much from you and the other RA patients.
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Hi Kelly. I had back surgery in Sep of this year & the back dr wanted me off my RA MEDS / Rituxan & MTX for 2 weeks prior to surgery. So I had the surgery, everything went fine, I then developed shingles within a week of the surgery. Was that painful! After going to my GP, rheumy & infectious disease docs, I think I’m going to be put on a daily regimen of Valtrex. Due to that, my rheumy doesn’t want me on my RA. meds although he has let me start taking MTX again. However , during this entire ordeal, my voice was skipping a sound here & there, sounding funny & hoarse once in awhile & now I can barely talk & hv to stop to get breath sometimes during a sentence. And I always feel in my head like I’m shouting although my voice is barely a whisper. Worst of all, I’m a flight attendant & cannot go back to work until I have a voice as I have to be able to SHOUT emergency commands!!
So it’s a relief to know other RA’ers r dealing with this as I too thought I was alone ! Thx
This is another piece of the RA puzzle. About 6 years ago I had a very bad case of bronchitis, On my second trip to the Dr, I also noted to him that my voice was so hoarse I could barely speak and it was incredibly painful. I had already been suffering with it for a few years on and off at that time.
Being a director of customer service, talking was my life and I spent 80% of my day on the phone. At times I would have to hold calls till a time where I could speak due to the pain. He said my voice was just tired. He dismissed my concerns and that was the last time I saw him, I went to another Dr, but nothing about RA was ever put together. I am realizing now, that I have been a walking time bomb since about 1998. The dominoes were in place, now they have tipped and there is no stopping them.
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I have had hoarse voice and excessive phlegm for years and been to an ENT countless times. The most he’s ever seen with his scope was inflamed vocal cords. It was before my RA diagnosis. My question is, do you know whether arthritis of this joint can also cause excessive phlegm? I have had a cough on and off for years as well. It produces very sticky, almost solid phlegm that twice over the past two months has completely blocked my airway, causing me to panic. The first time we had to call an ambulance and the nebulizer with oxygen seemed to help. I finally coughed up the problem lob in the ER, where the dr and nurses were very kind but didn’t know what to make of me or even what advice to give me in the event that it happens again. Last night, same thing, I got p and used my inhaler (prescribed in case it will help), drank warm tea and lemon while I felt my throat close tighter, finally woke up my husband to call 911 again… Went out front to see if the outside moist air would help me get a breath; I coughed out a in glob and could breathe fine again. Reading aloof the posts here I’m almost positive I have the cricoarytenoid joint problem; I’m just not sure whether the phlegm and the choking it causes are part of it or may be another issue in addition to it. I did not see any mention of this particular symptom. I am shocked that in the years of seeing an ENT, very good GP who is always willing to refer me to specialists, and a number of different rheumatologists who seem very good in every other respect, not one doctor has mentioned this problem. I came across it like the rest of you, doing my own research because I’m determined not to stop breathing during sleep again (and at this point determined not to sleep until I know that wont happen! This is by far the scariest ever thing I’ve experienced with RA. When you can’t breathe, priorities become very black and white. Nothing else matters. I just wanted to check whether you or any of the readers know if the phlegm is associated. Thank you so much for this forum!
Hi Lisa, That does sound frightening.
I am not sure, but as far as I know the symptoms are related to stiffness and inflammation in the larynx and not phlegm. I”m not sure whether that could be related the RA in another way either. I’d definitely follow up with your ENT with these questions.
Hi Kelly, I want to update you and readers in case this will help others. I’ve now seen two otolaryngologists and these seem to be the docs who know this issue best. The second one is a head and neck surgeon to whom I was referred by the first, who no longer does surgery. He looked at my vocal cords with a scope and the ct of my neck/throat. No definitive dx yet but it turns out that all of these same symptoms (other than immobility of the joints)–ie. hoarseness, narrowing of the throat, difficulty breathing, cough, dryness and shortness of breath–may also be caused by wegener’s granulomatosis, another hideous autoimmune disease in which your blood vessels are inflamed. It can affect any organ or it can be limited to specific areas, eg. Nose and throat. He saw changes in both my both and throat suggesting that’s what I’m dealing with. He ordered bloodwork to confirm or rule it out. I knew a little bit about wegener’s because the drs have been ‘ruling it out’ periodically for the past 8 years. I guess you never really rule these things out but just can’t confirm them ‘yet’. So my point is that anyone with all of these symptoms and no definitive dx of the cause should request the bloodwork (and if possible a ct scan of throat and chest) to find out exactly what’s going on. The test looks for a specific type of neutrophil. I can’t remember exactly what it’s called. The dr should know and if he or she doesn’t, try to find one who does as that will be the doc who knows what to look for and how to distinguish the causes. This doctor prescribed a short course of prednisone, which worked for me to completely resolve my polymiositis 18 years ago), and then will see me in two weeks to figure out where to go from here. I told him three autoimmune diseases is plenty and I don’t need any more. Praying that if it is wegener’s it is not also in my lungs and heart as they’ve seen a nodule and some calcification, respectively. Looking on the bright side I am so grateful for the amazing drs I am seeing, for the perseverance of my GP in her determination to find some answers and help for me no matter how many specialists and tests it takes, and for the meds that I’m hoping will help me literally breathe easier….
I was referred to a Rheumatologist about a year ago. My schedule is so crazy. I am recovering from cervical spinal surgery, and PT for a herniated lumbar disc, working full time and taking classes full time. I just have not had the time to go. I have been taking Meloxicam, prescribed by my primary physician. it helps with the inflammation of my joints, especially my hands and feet and the overall aching to my core. If I run out of the medecine, the pain is unbearable. I have been hoarse for the last 8 or 9 months, constantly choking and coughing with no cold symptoms to explain it. I am a 911 dispatcher and call-taker so, my voice is my living. I am constantly teased about how my voice sounds like a 900 number girl by road patrol. Which is fine, but the idea that RA could be the cause and I could completely loose my voice is scary! I will be making that appointment tomorrow. If I do indeed have RA and this is a symptom, I certainly hope the correct medication can help me to at least not have progressive problems, in which I am unable to speak.
I also have throat involvement with my RA. I have a mass on one side of the throat that can be felt by the rheumatologist, physical therapist, and ENT. The rheumatologist has said that RA does affect the throat. I have hoarseness, a weak, shaky voice or no voice at all. There is pain and a feeling of thickness. Swallowing is sometimes difficult. I had an ultrasound of the throat and results were normal. Next step is electromyography and nerve conduction study by a neurologist and CT scan of the throat by an ENT
Here’s an excerpt from Chapter 10 written by Stojanovic and Belic from the book Innovative Rheumatology published January 2, 2013. It is the most thorough explanation of RA and the throat (larynx) I’ve found.
The book is Innovative Rheumatology, Edited by Hiroaki Matsuno, ISBN 978-953-51-0916-7, Hard cover, 307 pages, Publisher: InTech, Chapters published January 02, 2013 under CC BY 3.0 license
DOI: 10.5772/55641
http://cdn.intechopen.com/pdfs/41621/InTech-Laryngeal_manifestations_of_rheumatoid_arthritis.pdf
RA in the larynx can manifest in the following forms: Quote from page 228-229
1) Arthritis of cricothyroid and/or cricoarytenoid joint (Ferdynus-Chromy, 1977; Gotze,1973; Kubiak-Socha, 1973; Woldorf, 1971; De Gandt, 1969; Copeman, 1968),
2) Rheumatoid nodules (Bridger, 1980; Bonner, 1977; Abadir, 1974),
3) Laryngeal myositis
4) Neuropathy of laryngeal nervus recurrens and
5) Postcricoid granulomas (Bienenstock H, 1963).
Histological examinations of cricoarytenoid joints in RA have shown synovitis as the earliest change that leads to synovial proliferation, fibrinous deposit, forming of pannus on joint surfaces, erosion of the joint cartilage and finally obliteration and ankylosis of joints.
Cricoid necrosis as the last phase of pathological changes on the cricoid cartilage can cause serious pathophysiological disturbances (Gatland, 1988).
Neural atrophy of laryngeal muscles and degenerative changes in laryngeal nerves caused by vasculitis, can follow the degree of affection of cricoarytenoid joint (Voulgari PV, 2005; Lofgren RH, 1962). Rheumatoid nodules of different size in the larynx-are mainly found with seropositive RA.
The long and the short of it is this can be a very serious complication of RA leading in rare cases to the need for a tracheotomy if breathing becomes obstructed. Voice changes with RA should be investigated by an ENT with a request for a CT scan and laryngoscope.
I have been very hoarse for the last 3 months. I just had a CT scan of the neck which showed inflammation in the soft tissue of my neck. I have lupus and RA and I still work and deal with the public in person and answer phones on a daily basis. It is getting very hard. Sometimes I try to talk and nothing comes out and sometimes people just can’t understand me. It is just about impossible to order food through the drive thru and it is very embarrassing. Somedays I just break down and cry and cry. I am trying to be strong, but it is not getting better and I am getting scared. My rheumatologist said she has never heard of this. What can be done to help?