Comments on: Cricoarytenoid Arthritis in Rheumatoid Arthritis, Part 1

By: Becky

Becky — Wed, 18 Apr 2012 12:56:28 +0000

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.

By: meliann

meliann — Wed, 18 Apr 2012 03:37:20 +0000

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….

By: Kelly Young

Kelly Young — Tue, 17 Apr 2012 17:26:19 +0000

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.

By: Jamielynn

Jamielynn — Tue, 17 Apr 2012 16:25:53 +0000

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.

By: Kelly Young

Kelly Young — Tue, 17 Apr 2012 15:56:27 +0000

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.

By: Jamielynn

Jamielynn — Tue, 17 Apr 2012 15:38:48 +0000

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.

By: Bharam

Bharam — Thu, 15 Mar 2012 05:24:01 +0000

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

By: Kathy

Kathy — Mon, 20 Feb 2012 16:53:58 +0000

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.

By: Kathy

Kathy — Mon, 20 Feb 2012 16:45:28 +0000

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.

By: Kelly Young

Kelly Young — Mon, 20 Feb 2012 14:16:28 +0000

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.