Is my RA heading for the jugular?

stickywicket
stickywicket Member Posts: 26,271
Hi there,

Do you have any info on RA affecting the larynx or vocal chords cos it’s looking like mine might have ventured forth into new territory?

I had an interesting first-and-hopefully-last visit to resus last October, following a cold gone wrong and what a nurse described as ‘horrendous stridor’. I was given a large cocktail of anti-inflammatories, steroids, painkillers and antibiotics (I believe its technical name is Kill or Cure) and once I’d decided to live and was breathing again, 2 cameras failed to detect a reason for it. The diagnosis was Laryngeal Spasm.

My rheumatologist (I'm on MTX & Hydroxychloroquine - no problems) thinks it might be the RA that caused it. She did a neck x-ray (nice rockery material but nothing to account for my lack of ability to suck air in) and said if nothing much showed up she’d go to an MRI. Meanwhile my GP’s made me an appointment with ENT as I have an increased tendency to choke and/or lose my voice. (Some regard the latter as a blessing in disguise. Yes, you guessed it – my beloved husband.)

I’d never heard of RA going for the throat before. What can I expect, is there any treatment or should I just start making my peace with the rest of the forum before the cold & flu season starts up again?
"The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran

Comments

  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    Hi, have you done a search through the forum archives? When I was a member before, someone else was suffering from this. I think his username was colin or colineone? He had a dog as his avatar, he had the RA affect the voicebox, I had never heard of it before.


    Sorry not to be of more help.
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Thanks very much for this, suzygirl. I've found him and PMd him so maybe some useful info soon. That's fantastic!
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hey Sticky - re your trip to resus :shock: :shock: :shock: !

    Never had that, thank goodness but my RA does affect my vocal chords. Apparently it's called cryocarotenid (sp?) arthritis or somesuch. I've had problems with hoarse voice for years but assumed it was down to the Sjogrens dry mouth but consultant said recently he thought it was the RA. Gets better when I am on a higher dose of pred so seems to make sense (although when Infliximab and Humira were doing great things for my joints generally, voice didn't improve). When I upped the pred about a year ago, my Mum commented that it was the first time she had heard my proper voice for about 10 years. And I get sooo fed up with people asking me if I have a cold or a sore throat :roll: . Apparently it isn't actually that uncommon but, I don't think there is any treatment other than the usual RA stuff. I am glad you have been referred to ENT though cos you seem to have a really bad time with it. To coin one of DD's phrases - damn pestilence!!!

    Will be interested to see what others have to say.

    Love Tilly xxx
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    Hi Sticky

    I googled it and as Tilly says it is due to the arthritis involvement of the cricoarytenoid joints. I also read that up to 30% of RA sufferers may develop hoarseness.

    They can also affect breathing if the joints become immobilized. An evaluation by an ENT specialist was suggested to confirm that it is RA connected and not for any other reason. I see you have been referred by your gp so that it reassuring.

    I must say you have had a really scary time a short while ago and I am sorry.

    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Many thanks, both Tilly and Elna.

    Tilly - please don't worry that you, too, could partake of the delights of resus. I'd had an exceptionally bad cold, totally lost my voice, been sleeping sitting up for 2 days as once I lay down I stopped breathing - in all, you are most unlikely to be as stupid as I was, even if mine is due to the RA which, at this point, I don't know.

    Elna - I didn't even know I possessed any cricoarytenoid joints until now. Maybe, in time, I'll even learn how to pronounce them. (And write them without checking the spelling every 3 letters.). I'm just a bit puzzled that I'm back to ENT after the 3 ENT surgeons in resus could find no reason for the laryngeal spasm even with 2 photo shoots - one then, one next day.

    Resus wasn't too scary as I'd to put everything into getting another breath in so no time to be scared. I even left Mr SW to list my medication. (He hasn't a clue. The only one he can ever remember is the Tamoxifen I had after breast cancer about 20 years ago.) I do recall thinking that if I couldn't get the next breath in it'd hardly matter what medication I was on.

    Ah well, onwards and upwards. Thanks again, all. Much appreciated.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    Aw Sticky,

    You have such a good sense of humour although you have these problems. It certainly does help though, doesn't it? Yes, as you say, if you have already been seen by ENT before it is strange as I presume your gp is aware that you did. Still worth going perhaps, because this time you may have more questions to ask now that you are aware that RA may have caused the symptoms you had and now that you know that you have 'cricoarytenoid joints'. :roll: Yes, we all have these, amazing what you can learn by googling. :wink: Perhaps you could ask them in ENT how you pronounce the word.

    Chin up, Sticky and I wish to let you know that you are a real asset on the forum, so helpful and understanding.

    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • helpline_team
    helpline_team Posts: 2,275
    edited 30. Nov -1, 00:00
    Hi Stickywicket,

    I am sorry to hear of the difficulties you are experiencing with your throat. Unfortunately we do not have information on RA affecting the throat but it can affect the parts of the body in different ways.

    You could also try to contact The National Rheumatoid arthritis society (NRAS) To see whether they have any further information on this http://www.nras.org.uk/

    It does mention that a sore throat can be a possible side effect of taking various biologics/dmards: http://www.arthritisresearchuk.org/home/search_results.aspx?as_q=medications+and++sore+throat&site=default_collection&num=15&start=0).

    As you mention that your rheumatologist has said that it could be your RA that is causing this, it may be worth asking if your arthritis IS under control, is there anything that can manage this.

    Best Wishes
    Adele
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Thanks, Adele,

    I'll have a look on the NRAS website & take it from there.

    I don't think it's the MTX causing it - well, my rheumatologist didn't when I asked and my RA was very good in October/November when all this kicked off.

    I'll see what ENT come up with, and try to avoid colds in the meantime.

    Elna - I'm blushing! I'll show your kind remarks to my family - they like a good laugh.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    Elna - I'm blushing! I'll show your kind remarks to my family - they like a good laugh.

    :wink::smile: Your family may well laugh, but they know you are one of the very best :smile:

    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.