Cricoarytenoid Arthritis in Rheumatoid Arthritis, Part 2
This post is part of an ongoing series on the so-called “complications” of Rheumatoid Arthritis called RA Is Complicated: “Complications” of Rheumatoid Arthritis
Cricoarytenoid Arthritis is a secondary Rheumatoid Arthritis symptom
Rheumatoid Arthritis attacked my vocal cords during that first year of this “flare” (now almost 4 years old). Out of the blue, my voice would disappear. For hours or days, I could only whisper. But, even on good days, I could no longer sing…
It was traumatic to lose the ability to sing. I remember barely being able to walk, struggling to get to a pew at church, and feeling sad that I could not raise my arms as we sang songs of praise. And then one day, I could not sing either.
As the room full of people rejoiced, the words of the song stung my heart: “…we raise our voices… we raise our hands…“ I could do neither. I could barely move.
I felt the Lord speak into my heart that He was aware of me. I knew He was satisfied with the only offering that I could bring – a broken body and silent praise. I sat perfectly still and wept.
More important things to worry about than the hoarseness as an RA symptom…
I have done a lot of reading about Rheumatoid Arthritis. Somewhere, I had found “hoarseness of RA” on a list of Rheumatoid Arthritis symptoms. So, I chalked it up to the weirdness of “this monster,” as WarmSocks called RA in a comment yesterday. I let it go. I had a lot more urgent symptoms with which to be concerned.
Several months after I’d lost my voice the first time, I experienced another symptom of cricoarytenoid arthritis (CA). One evening, my kids jumped for water and prayed for help because I could not breathe. Yes, I was scared.
For about a minute, it was as if I were choking or someone’s hands were around my throat. Then, my throat relaxed a little. Gradually, I began to breathe normally.
This scenario was repeated numerous times. I did not relate this breathing problem to the RA. Would you? However, I kept up my reading and research on RA…
One afternoon last year, I was sitting at the computer, researching for my RA 101. I was trying to understand the ways that Rheumatoid Arthritis attacks the lungs. I called out to my kids, “Come quick!” For the first time, I had stumbled upon an article on CA and dyspnea (breathing difficulty) related to RA. After that, I was like a dog with a bone, digging up answers.
Some degree of vocal cord immobility is a common result of cricoarytenoid RA. It can lead to hoarseness, loss of voice, or trouble breathing. You can read more about that on yesterday’s post.
Maybe we ought to categorize this post under “Ripley’s Believe It or Not.”
Funny thing happened: now that I knew what I was looking for, I kept running across people who had been affected by cricoarytenoid RA. Some were searching for an answer to their “hoarseness” problem. Others had been damaged in some way because it had taken too long to get answers. (One example: read the Health Central discussion which took place earlier this year. The woman’s cousin lives with a permanent tracheotomy since her case was so severe. You may recognize one of the names in the comments section.)
Eventually, I was scared enough to see a doctor about my vocal cords. I called the office of an ENT who had treated 5 members of my family. I asked a nurse to ask the doctor whether he treats vocal cord immobility caused by Rheumatoid Arthritis. I would be happy if they’d call me back to let me know. She put me on hold, came back in 5 minutes, and said this: “He said, ‘Tell her if she can’t breathe, cut a trache.’” Sad, but true.
Since I know someone will ask, I’ll tell you that lately my voice is strong. You would laugh if you could hear how loudly I sing in my car. I’m not wasting a minute of it.
Stay tuned for more on this topic and other “Complications” of RA. Cricoarytenoid Arthritis, Part 3.
Recommended reading:
- More articles about Cricoarytenoid Arthritis in RA
- Cricoarytenoid Arthritis in RA (Rheumatoid Arthritis), part 1
- Can Rheumatoid Arthritis Kill You?
- Do You Take Methotrexate for Rheumatoid Arthritis?
I have a friend who I think has this. Her sister has RA, but my friend was told that she has OA. I’ve looked at her go from cane to wheelchair, the braces on her ankles/legs, the bilateral shoulder bursitis, and thought, “You need to get a second opinion if your PCP thinks that all your symmetric issues on top of a family history don’t merit looking closer at RA as a possibility.” She also has a problem with her voice. Despite all this wonderful woman’s stiffness and mobility problems, what has been hardest for her is her loss of voice. She was a singer – a mighty good one – who can no longer sing. In all the years I have known her (?ten?) she has never been able to speak much above a hoarse whisper.
I’m looking forward to learning more about this topic. Thank you, again.
Would you be willing to write about RA complications in tendons/ligaments/muscles, such as: tendonitis (eg dupuytren’s contracture and achilles tendonitis), tenosynovitis (eg trigger finger or stenosing tenosynovitis), plantar fasciitis? These contribute to the dislocation of joints because they become weakened and imbalance the joint stability. RA contributes a general tendon contracture which contribute to the deformities: swan-neck, button-hole, claw-toe, ulnar and volgus drift, fallen arches. These things sometimes lead to pinching/pressuring of nerves, such as carpal tunnel syndrome. Another RA complication is bursitis, that can occur any and everywhere, it seems. For me, it feels as though these soft tissue inflammations are worse than the joint problems themselves. I’m willing to send you online info, if you want. Thanks for doing such lovely, honest, and thorough work, dear lady!!
I would also love to learn more about tendon/ligament issues with RA. My new rheumy (I just moved) has thrown out my previous RA diagnosis(two years) because he feels that issues such as tendonitis(which I suffer from head to toe) don’t fit the RA profile. Unfortunately, he left me with the “you are a mystery” speech and no proper diagnosis and took me off all my meds. I’m trying to educate myself. The article about the hoarseness was most informative and I appreciate you taking the time to blog about it.
Laura,
I will do my best.
That must have been hard. Can you keep a log of how you do with and without certain meds? I’d make a file of all of your questions / research also…
It’s none of my business, but I would get a second, third, fourth opinion… Whatever it takes until you have an answer. I’m sorry it’s so hard. :-/
Dear Laura,
I understand your problem. Because it is also my problem. I believe I have had RA since Juvenile RA. When I was a child, I had flares lasting years at a time where I could not even get up,uncurl, and get dressed by myself in the morning. For as long as I can remember, Rheum. would tell me: “It looks like you have RA.” or “I believe you have RA.” Then they would order blood work, it would come back negative, they would say “Well,you don’t have RA.” and basically not treat me, minimilize my pain ect.
As an adult, I was fortunate once when low dose prednisone held my arthritis in check for a time. After I stopped taking it in the fall of 2007 (due to an illness), my arthritis has continued to excalate.
In 2011, I saw a Rhuem. in VA for the first time. He diagnosed me with sereonegative RA (I don’t think I spelled this right). First I was overwhelmed and a bit nervous,then I looked into the signs and symptoms; and found myself there. I was so relieved. This Dr. said that I had always been undertreated. He proceeded to give me injections for different bursa areas. I didn’t know my legs could be so comfortable (even laying down)! Then I had to get a new doctor because the first one didnot take our insurance and we could not afford it any more.
This current (or last,I’m waiting to go to another new DR.) told me she “really unsure about my RA diagnoses because I seem to have too much soft tissue involvement”. I didn’t experience serious tendon,ligament issues(or at least I didn’t think of their involvment) until Oct.2010.
Since Oct.2010, I’ve experienced some kind of extreme tendonitis in my hand, nodules- on tendons and off-, flareswith my voice box arthritis, extreme dryness of my corneas (opthalmologist did not say this is from RA),migraines from tightness, and lots of inflamation and stiffness, this besides the fatigue,swelling (growing) joints any time I start utilizing that joint; Still the Dr.was not willing to treat me, Not even with the things that were tried and had worked previously.
By any chance, is your blood work negative? When I researched, I was shocked by the percentege of people with RA who have neg. bloodwork.
God Bless You. I”ll pray that either your Dr will have a revelation and start treating you, or you’ll find a GREAT new DR!
Sleep Well! 🙂
Michele’
Kelly; I’m so grateful to you for answering my unasked question of why I keep losing my voice, get hoarse, can’t breathe etc. :heart: ! Living alone it can be pretty scary when you take a sip of water and begin to choke uncontrollably and then you are unable to speak for hours,sometimes days afterward! My old Rheumy dismissed it as he did most things and for some reason I never think to bring it to my GP’s attention, I will now, I will most definitely bring it up with my new Rheumy when I see him. Thanks again you are a blessing to us all! GOD BLESS! :rose:
Thanks Alice. That is encouraging. Sorry if we share this BAD RA symptom, though.
Hi Kelly,
Thanks so much for your articles. Wow! What an eye opener. I have never had a doctor say it was related to RA, although I knew it all along inside.
You scared me some. I hope I don’t lose my voice. Can’t really sing, and so have lots of trouble swallowing.
My GP referred me to an Ear,nose& throat doctor for possible streatching. I hope he is informed. I wouldn’t want him to do any more damage. Any comments?
Linda, Please don’t be scared. The best thing I can tell you is to have your RA treated as aggressively as your RA doc agrees is appropriate. I don’t think the exam will do more damage. They have tiny cameras.
I’ll tell you a little of what I’ve read about treatment: I think doing invasive things like surgery or prednisone injections is very rarey needed. Usually, the flares come and go or are controlled with meds the same as other flares. Nodules on the larynx might be seen in a scope and could be removed if needed, but sometimes they go away. I hope that helps some.
Does CA sometimes cause pain? Twice recently I have had short periods [10-15 minutes] of severe pain in the top of my neck, behind the jaws [not the jaws themselves]. It did not appear to affect my breathing or pulse. Could it be CA???
Barbara, I wish I could tell you for sure. You could point to the spot with an ENT and he can tell you if that’s it. Or you could look up a picture to see where the vocal cords are.
Here are some images: http://www.google.com/images?rlz=1T4GGLL_enUS326US327&q=location+vocal+cords&um=1&ie=UTF-8&source=og&sa=N&hl=en&tab=wi&biw=1419&bih=639
Barbara, I should add – yes, I have had pain. Usually it’s only a fullness though. And rarely it has immobilized (that’s like a choking for air). I hope you do talk with an ENT if you think you have this. The behind the jaw area could be a lymph node too?
Kelly, thanks for the links to the illustrations. The location is certainly close to where I felt pain. And now I have some ear ‘sensations’ which apparently can also result from CA [not pain at this stage, but not really comfortable either].
I will see my GP next week and discuss referral to an ENT. Another specialist to add to the list!!!!!!!!!!!!!!!
Barbara
Barb, RA in the jaw can cause pain near the ear. Of course I can’t diagnose, but it’s something to check. take care.
Had to come revisit this subject…had to go off simponi for over 2 months..first time off biologics in over a year..well you can guess what happend…i had a horrible bout of this….its so painful and scary..but this is the first one ive had in over a year..i never never ever want to go through this again…..cant swallow,talk,i sound like a man after its over…and it takes me days to fully recover….i like to describe the pain with marbles…Two marbles with spikes stuck in my throat…and try to swallow with those things in there…lol
thanks Kelly
Kim
I have this hoarse voice if i talk to much,i am shocked RA causes so many things other than just joints…thanks again Kelly ♥
Ah…I wrote a letter to my RA the other day. I put that:
“My disease has been kind enough to bring along some friends…Terrific, these jerks travel in packs. I suspect there may be more in the bushes waiting to ambush me.”
I had no idea this was one of them. I have been dealing with hoarseness, fullness, choking feeling for a bit now. I just chalked it up to a “cold that was taking its sweet time to become one.” For a month? My immune system sucks right now. I highly doubt I’ve been fighting a cold off for a month.
I came across this and it was a light bulb. (You must keep lots of them in the closet, Kelly, I keep finding more and more as I read.)
I trained as a young adult for six years in singing. My youngest daughter has a voice (and a memory) at three that makes me believe she will be a singer, too. (She already knows the entire song of “If I had a Hammer” by Peter, Paul and Mary.)I sing to my daughters at night before they go to bed.
I haven’t been able to recently. Recently they have been singing to me, because Mommy’s voice hurts.
And you know, I could despair, but I won’t. I will add this to my knowledge, and I will use that knowledge to educate myself, my doctor, and others. I will fight with that knowledge…
Because I will not let RA get me down.
My nine year old was diagnosed with JI when he was 3 years old although symptoms started appearing when he was 1 1/2. His arthritis affects mainly his knees, ankles and hands and neck.
Two weeks ago he lost his voice became hoarse and he had trouble breathing. He wasn’t panicking but had to take short breaths and was making funny noises as he did so. I took him to the GP (I saw a replacement as my regular GP was away) who declared his chest clear and that it was probably asthma. The inhalers did nothing so I went back to the GP a few days later and was given redipred to use with the ventolin and the flexitide. The doctor made the comment it was odd he couldn’t hear any asthma wheeze but as his chest was clear it must be asthma.
Back we went two days later with no improvement and luckily my regular GP was back from her holidays and immediately said, it is probably due to his rheumatoid arthritis affecting his vocal chords and lungs. Who knew?? Well I am floored. We are seeing his specialist on Tuesday who is very thorough and will explain everything but I am so scared for my son now and what lays ahead. Does anybody have experience with this kind of thing at such a young age?
Thank you.
Fi, I don’t know about how it would be different with children. If it’s lungs, he may need to see a pulmonologist with knowledge of rheumatoid disease.
If it’s vocal cords, it’s my experience that the joints flare worse at times just like other joints. General disease control is usually the only treatment, but I’ve read that steroids can be applied directly in some situations.
I would guess that you need an excellent ENT who has experience w/ rheumatoid patients. Hopefully your doctors will help you find that if needed. Are you near any of the research centers for RA?
Thank you so much for posting this! I had developed hoarseness right about the time of my RA onset, and I kept asking every doctor why this was happening and if it was related to RA. No one (including my Rheumy, Primary care, ENT, Speach Therapist and GI) thought it could have to do with my RA, but I was convinced it was!
I can definitely sympathize about not being able to sing. I have always loved to sing, and being told I should not (for fear of encouraging vocal nodules), was disheartening to say the least.
It was not until today when I happened to see an infectious disease doctor about an inconclusive TB test to qualify me for Humira that he suggested I look into the Arytenoid bones for possible involvement. This is how I found your post!
I plan to share this with my doctors so they can help anyone else with this problem! Thank you again for the information!
Hello,
I’m so happy I found this RA sight. I’m esp relieved to hear from someone else who has felt and experiences the same things. I have been in the same flare from at least 2007 without anyone diagnosing it as such that early.
I also have RSD (Reflex Sympathetic Dystrophy). It has been active since Spring 2005, especially effecting my left leg and right arm.
Anyway, because of my RSD, being ill in 2007, and Dr.’s passing the diagnosing buck (you know what I’m talking about-Rheum. sending you to Neuro. and Visa-Versa ECT… ECT…) I didn’t realize that my “Hoarse” voice or having no voice at all had anything to do with arthritis. I first learned about “Cricoarytenoid Arthritis” from the Judge at my disability hearing last year(2011). I was upset! I would’ve thought that one of my many Dr’s would tell me about the possibility. Esp. the RHEUMOTOLGIST! Thank you for telling us how serious this can be, the ENT who tested me didn’t tell us how dangerous it can become.
I was wondering if any one out there has had success with speech therapy. I’ve not been able to be invoved yet, due to low energy and transpartation issues. Anyway …Are the benefits of speech therapy worth all the time and energy?
Thank you for your time!!! It sure is nice to talk to others who know how things are! 🙂
🙂 Michele’
I can’t believe I’ve found this website. I am 58 yrs old, and I lost my voice 4 years ago. It began with shortness of breath, hoarseness, then complete voice loss. I became very sick and lost weight. I was originally diagnosed with Spasmodic Dysphonia, but after numeroud Botox injections, to no avail, I began a quest to seek the help of other ENTs around the country. I had experienced joint pain, but not severe…until the past year. My voice is stronger now, but sometimes I feel like I’m being choked (tightness). The joint pain I’m experiencing is all over….back, neck, shoulders, knees, wrists (w/ severe pain and a lump on my left wrist bone). My internist has not referred me to a rheumatologist at Wash U. School of Medicine here in St. Louis, MO. I have been trying for over 4 years to find an answer. Now I’m wondering if I could have some form of RA which led to my loss of voice. I will keep reading and trying to educate. Any other website you can provide would be helpful. Thank you so much!
I just want to say THANK YOU for this site!! I have tears running down my face knowing there are other people out there that are just like me. I have been fighting with this for about 10 yrs now. I have been to 12 different md’s and physical therapy and speech therapy before I found my amazing RA md who finally said I have RA and another form of arthris and now lupus showing its ugly head. The bad thing is that I have become allergic to the Methotrexate and Humira, so i now get to start on Simponi. I just hope one day more education and treatment will be out there for us!!
Today, I am tired and depressed. I saw a doctor just two days ago and in my mind I was not so bad…She was very concerned about my chest pain which I had gotten so used to, I’d thought nothing of it. After adjusting my dosage of MTX & preds, she said she would trust me but I was to go to the emergency room if it continued or worsened.
I have been having breathing trouble. I have cervical spondylosis. To day my right arm feels dead. I have not been sleeping & last night my daughter had a nightmare. I feel exhausted, but I’m at work. I am grateful for the fact that I can still work. I know that many of you can’t anymore. I used to have a very wide singing range but today between the breathing trouble, and the feeling that my throat is closing in…I’m lucky if I can sing mid range at Mass. To day I am tired, in pain and depressed and I just needed to say that to people who understand. I’m not generally a complainer, but sometimes we all need to speak the truth. We hurt. We’re tired. Our bodies do not work as they should; as they once did. We get depressed when we can’t do things that we used to, or when people don’t understand, or when we hurt so much or when we discover that we have yet another symptom.
Today, I am tired, depressed, I hurt, my heart is beating weirdly & can’t breathe properly.
Today is not one of my better days, but God willing, I’ll be better tomorrow. Battle on folkes
Oh & I 4got to say that I seem to be going deaf. Ever have so many things wrong with U that U 4get a few -_-
Hang in there! God is good and He knows your pain and will not waste it!!! Praying for you!
Hi all,
I have cricoarytenoid arthritis and it was undiagnosed until about 5 months ago. It was so bad that I went into respiratory arrest and I needed a trachiostomy for 2 months. Add that I was 37 weeks pregnant and had been off all of my arthritis medications which ultimately led to this disaster. Baby boy is fine by the way and was born without any problems. My ENT doc thinks I’ve had arthritis in the C-joint since I was diagnosed 22 years ago (at the age of 14). Go figure, eh?
That being said, I need to learn more. Who has had experience of living with arthritis in this joint? If you would be open to exchanging email addresses so we could chat about your experiences, treatment options, etc, that would be great.
Laurie
Ottawa, Ontario, Canada
I am sitting in my office with tears running down my face. I have been experiencing this for the last 4 months and did not know that it was related to my RA!!! Do you know if there is a test for CA?
I am also a singer with many years’training. Am experiencing the hoarseness and feeling of pressure in my neck (which I’d ascribed to long-standing allergies and muscular tension). Diagnosed with RA 6 months ago but probably had it for awhile before! Does anyone out there have any info on exercises or anything to help free up or improve the mobility of cricoarytenoid joint(s)?? Heat, massage and some stretching/flexibility exercises have helped my other joints…. I really miss being able to sing, and it’s so hard now to even make a clear tone/true pitch, especially in middle register. Any ideas?? Colleen
Well, I first said “that’s me!” and then said, no, that my ENT doc said I have a growth on my vocal chord. Had my biopsy yesterday and he removed that and does not think it’s cancer and found my right vocal chord swollen (it wasn’t when he stuck the scope down my nose in the office about a month ago. He told my daughter he thinks my RA has caused this. My voice is weak but better since he removed the nodule and I go for a follow-up next Thursday. Some of the things I’m reading here scare me to death! 🙁
I just read both your posts about this issue (about to go on to the third one!) and I just wanted to say THANK YOU. Thank you for telling me that RA does this but even more for sharing your personal, spiritual response to this. I was so blessed and encouraged on many levels. My husband (44) was diagnosed with seronegative RA earlier this year and has just got worse and worse since then. But the most distressing thing for him has been losing his singing range and ability to play the piano and lead in worship at church. Knowing it is part of the RA is somehow helpful. I am delighted to hear you are singing again and trust the same will be true for my hubby once we can get this under control.
THANK YOU FOR WRITING ABOUT THIS!!!! I have been diagnosed with RA for about 10 years. Over the past 3 years I have seen a significant change to my voice range. I used to be a first soprano, with no difficulty. Now when I try to sing notes that are off the staff (higher than E), I am struggling and my throat “constricts”. I’m not that old for my voice to have “gone” and it’s been demoralizing to lose the ability to do something that I was well known for. For awhile now, I’ve wondered if it might be somehow related to my RA. I’ve thought about asking my rheum but figure he’ll think I’m nuts! Today, I started searching and came across your blog. HOORAY!! I’m NOT nuts! and I’m going to have a discussion with my rheum about this!
THANKS!
Aha!! Methotrexate allowed me to sing a C above middle C for the first time in maybe 15 yrs. C has always hurt me!! I could manage most other lower notes and a D, even Csharp was ok. On another more frightening note (see what I did there?), I have had trouble breathing for a long while, in particular if I accidentally (as you wouldn’t do it deliberately) aspirate some spit – and then I’m heaving away like I’m about to breathe my last. I’ve done it in the street, at my desk, in a meeting – so frightening, and quite embarrassing. But now I think about it, maybe it too has reduced since MTX became my worst best friend.
I cant tell you how happy I am to read this. I first lost my voice about 13 yrs ago, all I could do was whisper, it came back the first time only to go away forever a couple of months later. I saw many ENT’s with NO answer. One ENT said he saw 3 nodes on the right side vocal cord but because of my age he ruled out cancer, less than a yr later I ended up with stage 4 throat cancer. I’m not sure if those nodes were RA nodes and my being a smoker turned them cancerous, but that’s what happened. After I got the all clear from cancer ( thank God, I had been pregnant when they found the cancer and we both survived, it was truly a miracle! ) and about 1 yr later I was diagnosed with RA and Fibro, they told me I had RA for long before I was diagnosed but the Chemo from the cancer and being pregnant put me in remission. In 2010 my ENT found another node on my left vocal cord and without hesitation he sent me to surgery and took it out. I am now putting things together in my mind and wish the MANY ENT’s and drs I saw would have put this all together, I might not have lost my voice permanently like I did 🙁 Now that I know I will talk to my RA Dr about this. Thank you so much for this article. I really could just cry, I never thought I would find out what was wrong with me.
I know this one is old, but here I go. Before the RA lung issues, I would occasionally run a low grade fever, about 100, just enough to make me feel crappy. but it wasn’t often. Now, since the lungs are now involved and I’m prednisone dependent, if I go more than 10 hours without the pred, my fever comes up, and can go as high as 102 at times if I wait too long about taking the pred. For the last year, I’ve been on 10mg of pred, twice a day every 12 hours. Recently though, about a month ago, I started running fever again, every day and as much as 101 and 102. So I backed the pred from every 12 hours to every 10 hours. Bam! Fever stopped, that very day.
I also have the loss of voice and I am unable to sing anymore. My Rheumatologist said it wasn’t related to the RA but I knew in my heart it was. This confirms my belief.
I have also been having bouts of getting choked but never ever guessed it could be related to the RA. I once started coughing at Arby’s and coughed so hard, I passed out. (TMI – also wet myself and was so embarrassed). Scared my husband to death and neither of us could figure out why that happened. Since then, it has happened many times but thankfully not to the point of passing out.
Thank you Kelly for your wealth of information for sharing with all of us. You are such a blessing. I pray for you and your family and for your health. You are a precious blessing to me and so many of us.
Thank you so much Nancy. That means the world to me.
I hope your doctor will read my new book – there are studies showing this is not a rare symptom of RA / RD. It’s just not known so it’s not considered. One doctor I quoted said that CA is often mistakenly diagnosed as asthma or laryngitis.