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Behçet's UK
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Has anyone experienced issues with losing their voice?

it's been happening on and off for months. This past week however you would swear I have a bad case of laryngitis. I have seen an ENT specialist, twice who was at a loss. States inflammation around the vocal chords, chords themselves are ok. I suggested it was inflamation caused by BD. He said not likely-you must have heartburn. Even though I am a nurse, I entertained his grasping at straws and took very $ meds for heartburn × 2 months. No change-go figure. Never got that referral to the voice disorders specialist. Thought I would check it out with y'all? Please let me know if this has occurred for any of you. As mentioned before in previous posts, I have been having a flare for past 10 mos. Currently on enbrel, plaquenil, anti inflammatory and pain meds, domperidone.

15 Replies

Hi can't help with voice probs, but........I suffered for years with my scalp, burning, itchy, spots, etc. Told by all to change my shampoo, donts use gels etc. and lots of other do's and don'ts. Then just last week saw my Prof with photos and an actual spot and guess what....now they decide it is BD.....only took 5 years!!!!! Who knows we just gotta keep on trying to help ourselves. Good Luck

Hugs and S,iles




J'ai également eu un problème de voix qui ont duré plus de 1 année. Après examens laryngoscopique le médecin oto-rhino-laryngologue a conclu a des petits signes indirects de reflux gastro-pharyngien (RGO) qui seraient dû au traitement anti-inflammatoire (AINS). Il m'a prescrit du Pantoprazole que j'ai pris pendant plus de 6 mois, au début 2x40mg/jour, puis 2x20mg/jour. Cela a nettement améliorée ma voix. Je n'ai que de temps en temps, lorsque je suis très fatiguée, la voix qui devient "lache". Je suis en ce moment en train d'arrêter progressivement, sur 3 semaines, le médicament, j'en suis à 20mg 1x tous les 2 jours et pour le moment ça va. La suite au prochain numéro. Bon courage à tous et très bon week end


hi hun I too loose my voice on numerous occasions to where only a rasp of air is heard it can last anything from day to weeks I usualy have mouth ulcers when this happens but always a very dry throat,docs have ran tests took swabs ,the best they can come up with is either acid reflux or possibility of ulcers too low down in throat or near voice box...reflux meds don't seem to help it much they tend to give me things to produce more saliva or steroid dissolvable ones that may help u ..I also choke daily on nothing its really annoying n the dry throat really gets sore ,hope you find a reason behind it n get it treated xx cant really offer too much advice im afraid in same boat really xx


Hi kbod,

Just an fyi after having my throat scoped through my nostril-ugh!! The specialist decides that I have tight muscles in my neck causing the hoarsness and loss of voice-ok...what?? I have been recommended to group speech therapy. They say if I can learn to speak in a higher pitch it should resolve. I don't want to sound like a smart ass but my voice is like that of a 5 year old girl already!! Should I walk around talking like minnie mouse?? Really! I am confident it is inflammation- they don't even bother looking up BD before seeing me. I'm no genius but if I were getting consult to assess a patient with a disease I've never heard of before- I'd be looking that up before I see her and not while she is there or after she's gone! Good luck at your end! Yes I suck on lozenges and drink cold liquids ++, it does help more than anything else;)



Been seeing my rheumatologist for 3 1/2 years now. They're not sure of my diagnosis yet but I've been told that if my symptoms persist then they would probably give me the diagnosis of behcets.

For the past year I have been suffering with recurrent laryngitis and loss of voice. In the past 6 months I have had it 5 times. Went to my GP today and she was concerned. Wants to wait til I've seen my consultant again (9th April) then wants me to see her again. She wants me to ask them if it could be linked to my disorder and if they don't refer me then she will refer me onto an ENT consultant to have it checked out.

Will let you know what my rheumatologist says about a possible link.

All the best xx


Hi again,

Since seeing my consultant and asking him about the possible connection with my condition, I am maybe a liitle clearer on things.

He said that there is no relation to loss of voice and reactive arthritis/ behcets but that the immunosuppressive drugs MA be causing my recurrent loss of voice (laryngitis).

Hope this helps.

All the best xx


Hi there....mine said the same-no connection. However, I've done my own research and there are articles/studies on this subject, just that I'm not to clear on how BD has an impact on voice. It still comes and goes for me. At times I've noticed ulcers at the back of my throat, other times-nothing back there. Google behcet's and hoarseness or loss of voice, you'll see what I mean. What's MA? Type of med?



I have another condition that comes with Behects called sjogrens and that gives you a dry mouth, throat, eyes, nose etc.

I lose my voice a lot and also have inflammation down the throat, along with ulcers sometimes and other times without the ulcers.


It could be neurological Nurse Ratchet.


Well, who really knows what exactly happens down there in my throat? Interesting Andrea, because the first ENT I saw said he could see inflammation all around the vocal chords. The 2nd ENT I was referred on to-THE voice specialist ENT (the singers go see him)- he said that he saw nothing. He said my muscles were tight in my throat.Well, DUH! You're jamming a scope up my nose and down my throat!! Right after his "diagnosis", he is Google' ing Behcet's right in front of me and asking me what I've read about this disease affecting the voice. As a health professional...that was unprofessional. Don't waste my time and your time-do your research in advance, S.V.P! He recommended speech therapy , and so I thought I would give it a shot-even though I thought it was a bunch of bunk!

After 6 weeks of speech therapy, the recommendation was that I speak in a higher pitch so that I sound less raspy/hoarse. Well, at the best of times, I have such a "little girl's voice" that if I made it any higher, I sound ridiculous! My family doctor concurs! ! So, I just try to rest it when it acts up, drink cold slushy drinks, etc. And that's life! Could be way worse! Gives me an excuse to not talk sometimes, that's all;)

Take care girls!

Nurse Ratchet


Hmm had to chuckle.....I use marshmallow tea [or capsules] which works wonders on the throat and digestive system. Also helps wheezing/coughs due to dryness of the whole tract right down to the bottom end so great for regulating.....definitely worth a try and so much more comfortable than shoving a scope down your throat :D


Do you buy this tea at a health food store? It's simply called, 'marshmallow tea'? And you say it regulates you?? I need ALL the help I can get in that dept. It's honestly a full time job trying to keep on top of that:probiotics, all bran, restolax, senna tablets, herbal laxatives ...EVERYDAY and all day long! All of it I take and I'm lucky to go once a week:(

I shall run to the store tomorrow to get some! Thanks Andrea;)


Yes it is called Marshmallow leaf tea and I get mine online. Some have other herbs but I only use the marshmallow tea with nothing added. The same with the capsules and I also buy them online, but I have purchased the capsules before in Holland and Barratt.

It puts and layer of slime all the way down the digestive tract which protects it and naturally helps food etc slide down.

I would recommend the capsules for the bowel and take on an empty stomach, with lots of water about half an hour or so before meals. It seems to work pretty quickly and you can then take it less once it starts working. Haven't needed anything else to make me go for sometime now, which is a miracle.

Don't take any other tablets at the same time as this and try taking them an hour or so either side of the marshmallow.

Also noticed you take domperidone which is supposed to help with the stomach emptying [motility] I too have tried this in the past.

Ginger is also good for this and I too either drink ginger tea or have a capsule before meals....great for stomachs and nausea and also as an anti - inflammatory.

Hope this all helps


Thanks for the tips Andrea;) I will go on the hunt for that product today! I did try domperidone over the summer due to terrible bloating and nausea I was having. It did work initially , but after a few months it lost its effect, although I get a lot less nausea than before which is great. I've struggled with horrible constipation since childhood, always trying to find that magic potion that will work good for me. I'll keep u posted on my hunt for it! Thanks again so much:)


good luck with that...it does help with bloating as well so any problems finding it....just Private message me and I will help.


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