Comments on: Cricoarytenoid Arthritis in Rheumatoid Arthritis, Part 3

By: Joe

Joe — Sun, 05 Feb 2012 22:40:25 +0000

I have been dealing with this for years and didn’t know it. I have been misdiagnosed with several breathing disorders and currently have a trach in my neck. I have been diagnosed RA for 20 years, but didn’t know how my shortness of breath was related. I have also been (correctly)diagnosed with COPD.

Most recently I was kept in a medical coma for over a week while they had me intubated and pumped me full of steroids. When they pulled the tube at the end of the week, there was no improvement. They put in the trach, and called in an ENT. He recognized it immediately. He is working with a vocal chord specialist on developing a plan to keep it from blocking my airway.

By: Turtlemom3

Turtlemom3 — Sun, 14 Aug 2011 15:32:58 +0000

Paula, Your story is so similar to mine. My voice problems came on very gradually, and mostly involved my voice getting “tired” more and more frequently and after a shorter and shorter time. I was one of the lead singers in our choir [Russian Orthodox - we sing the entire service] – had a wide-range alto going from 2nd Tenor up too low first soprano. My high C deserted me, and my lower range began to “flatten out.” Finally I was left with less than an octave. But singing made my neck tired for hours afterward. About that time, my husband had a heart attack (he was our choir director) and we both had to quit the choir. He never totally recovered from the heart problems (has had 3 more heart attacks since then) and my voice never recovered, either. I’m not exactly hoarse, just talk more in a monotone. I tried to make some tapes of nursery rhymes and fairy tales for some of the grandchildren, but my voice would get too tired to continue after only about 15 minutes, and wouldn’t recover for several days. I gave up the effort. So, I’ve down-sized my baby-grand piano (youngest son has it and his oldest son is taking piano) and my voice is permanently downsized. What next? This disease is eating up all my joys!
When I finally mentioned the hoarseness and pain in my larynx, my rheumie doc said, “Oh, you have cricoarytenoid joint involvement.” He now palpates my larynx and has me go through “aaaaaaaaa-eeeeeeeee-iiiiiiii-oooooooo-uuuuuuuu” at each visit. He recognizes the FACT of this nasty part of RA, but doesn’t realize the extent of my losses – what my inability to sing to praise God means to me, what not being able to tell stories to the grandbabies. No one does, except, perhaps my husband. NONE of the docs, no matter how knowledgeable or compassionate, understand the way this disease devastates the patient and her (or HIS!) family! But, perhaps if they did understand the devastation of the lives involved, they might become so involved they would be ineffective at treating their patients. But we, the patients, still have to live with it.

By: Paula Sterling

Paula Sterling — Fri, 29 Apr 2011 02:29:42 +0000

I am astonished at what I am reading! I have fibromyalgia as well as RA but have blamed most things on the Fibro. I have asked my doctors about my voice going hoarse for years and they just give me that “look”. I lose my voice when I get overtired – I suddenly go from talking to whispering. That is when family tells me to stop and go lie down. I also have pain when eating, sternum pain a lot of the time, water getting caught in my throat, and especially not being able to sing without pain, weakness and loss of breath. I also breathe very shallowly (I’m working on proper breathing) and use a CPAP. Seeing all these symptoms of Cricoarytenoid RA makes me ecstatic! I don’t want it but I am relieved that there may be an explanation. Time to go back to my Rheumatologist! THANK YOU!

By: Kelly Young

Kelly Young — Mon, 14 Mar 2011 18:20:12 +0000

Dear Char, I don’t know why doctors are so confused about this. It wasn’t hard w/several hours of research to see how common this is – and how many patients tell me about their experience when I bring it up. The only things I can tell you about treatment are that treating the disease itself as aggressively as possible (with medicine) is likely also treating the CA, right? And that you should seek out a good ENT who knows about CA – there are some – to see whether you have nodules or immobilization or whatever and help you keep an eye on it. The trach is a an emergency last resort of course. Another more drastic treatment is a direct steroid injection. Also sometimes surgery can restore an immobilized vocal cord. I need to see if there are other treatments that I haven’t heard of yet & write up an new page on this, but I hope that helps you.

By: char witosky

char witosky — Mon, 14 Mar 2011 00:24:36 +0000

After I had Ca of thyroid and lymphs many years ago, my vocal area had always been “fragile” and I could come down with laryngitis easily. I am an actor, artist and singer, and I was worried that I could never sing again. (“To sing is to pray twice.”) The speaking voice was there but ever since the singing voice has been very fragile.

For at least the past 10 years I have complained that my voice has become much more raspy- almost having a hiss at one pitch and another deep voice, deeper than my own by several notes, underneath. It came and went rather on its own, often during or after stressful times, and would leave me with no voice for a week or two.

Then after having several scares with swollen ankles and elbows, I was finally diagnosed with RA. I don’t exhibit the RA blood factor.

An endocrinologist I was sent to after complaining of extreme lack of energy and hair falling out asked me if my voice had “always sounded like this”. Lowered my synthroid but never said a word that RA could be the cause of the voice hoarseness.

My RA doctor has never said a word about CA in RA. I only recently discovered this and am amazed that doctors do not mention this possibility!!

But most importantly, I see my RA progressing: my balance is worse, I fall more. My ankles are swollen every day- they wake up achy and stiff and if I sit for any time at all they get stiff again. I can no longer arch my back; arthritis has moved into my lower lumbars. I can no longer play piano to make music, only noise- my husband now thinks we can downsize it! I am having to retire from teaching, which I love, because I cannot physically keep up with all that I have to do. And my voice has decided never again to sound like my voice used to; it remains mostly a raspy old woman sound if I speak above a whisper. Saddest of all is that I can no longer sing. I have had several sessions where I felt like someone was choking me (a lot like my Ca did when it wrapped around the vocal cords, only it never relented) Is there any RA treatment that is helpful? Besides not talking. And doing a trach. I am on Plaquenil. I believe my RA specialist is being conservative because I have many allergies to drugs.

By: Kelly Young

Kelly Young — Thu, 21 Oct 2010 19:58:02 +0000

Nina, I’m not sure why most rheum docs don’t / won’t discuss this common issue with RA. If you need to send him a link, use the links that I use as references (in part 1 or 2 of this series, the links are the underlined blue text) since they are from medical sites and the doc would take them more seriously. Good luck to you.

By: Nina Wikstrom Aguilar

Nina Wikstrom Aguilar — Thu, 21 Oct 2010 18:55:08 +0000

This is fantastic information! I had no idea…..
I have had chostocondritis, inflammation of the breast bone…actually think it is hurting a bit today. But I never thought to mention about difficulty swallowing; OR, I just thought it was the thyroid nodules that I have (4 of them). I will email my RD right now and mention this…

thanks for all you do!!

By: Michelle

Michelle — Mon, 08 Feb 2010 15:15:15 +0000

Interesting information and at least I can understand why my voice disappears for about 6 weeks at a time every year. I am a singer who is very frustrated when this happens, because it is the one thing that brings me total joy and makes me feel good and the energy it brings me when I sing literally lifts me up. I have been lucky in that my fiancee is a recording engineer and musician/songwriter and I have been able to record a couple of songs so my 81 year old mother can hear me before she succumbs to liver cancer. She also has diabetes and RA but is very stoic about all of it and I guess I get my fighting spirit from her. I will never give up striving for quality of life and neither should anyone.

By: Viesta

Viesta — Thu, 12 Nov 2009 09:30:52 +0000

Kelly, O M G I thought I was nuts when I told the hospital that my breast bone was inflamed and killing me, I actually thought I was having a heart attack that day, I had a EMT to come get me, my breast bone was so tender to the touch, I was throwing up because the pain was so bad, no one said it was related to the RA, but I have learned so much since then…… thanks again for all your info Kelly- it helps with each read…. one day at a time I say~

By: Kelly Young

Kelly Young — Wed, 11 Nov 2009 16:35:53 +0000

Steph! In my humble opinion: you are lucky to be alive and should never go off your treatment again – (read my disclaimer at page footer, folks. I am not her dr. and she knows that…)

I don’t talk about the choking w/my docs either so far. I don’t want them to think I’m nuts in case they don’t know about it choking sensation of CA. But I will confess to the hoarseness (cant’ hide it usually) since I know that is less likely to get me labeled “nutcase.” Talk about “defensive medicine” – this is “defensive patient syndrome” ???

OK: the breastbone pain: there are tiny joints where the ribs join the sternum (called?) and I’ve had it hurt bad too. I actually cried when I watched a YouTube RA video where a woman described this breastbone pain. I felt validated. Then last month, when I met my new RD, the doc pressed there and asked if those “tiny” joints hurt me? I said, “yes, you are the first doc who believed it possible.” My new dr is much smarter than previous… :evilgrin: