Cricoarytenoid Arthritis in Rheumatoid Arthritis, Part 1
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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…
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~
[...] “complications” of RA that aren’t actually “complications” at all. Yesterday’s and today’s posts are about cricoarytenoid RA. I’m in [...]
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.