Chronic Hoarseness

[nanleighh]

I've had three bouts of hoarseness in the last two months. I saw my rheumatologist yesterday and he says he doesn't know if it's related or not to the lupus. I was wondering if anybody else has had these symptoms.

[Chris21]

I often get this, occupational hazard, I work in a school classroom lol I was told mine was because of sjogrens? I have quite a few auto immune things going on and think they all overlap each other, so it is possible. I use biotene which helps and keep a bottle of water next to me because not only do I go hoarse I get a dry cough.

[EOLHPC]

Good question, nanleighh: am glad you posted it!

Yes, have been prone to this since my early 30s (am now 62). It's worst when am in a flare, but I live with it all the time, am managing it daily, and it's extra bad with any even slight exertion & stimulation.

At one point, a physio thought it might be to do with incorrect breathing (slightly hyperventilating by not breathing slowly & deeply), but her theory turned out to be completely wrong. Also, my chronic upper GI conditions caused my medics to think the hoarseness might be due to refulx etc, but this was also proven completely wrong. Basically, rest & good hydration are how I lifestyle managed my hoarseness for decades. Biotene products & artificial salivas never helped much....and seemed pricey, but sipping fresh ginger tea 24/7 did help as much as anything could

My work involved regular public speaking & lots of conference meetings etc, so my voice was a crucial tool, and the chronic hoarseness was a big prob. Unfortunately my infant onset lupus diagnosis got lost and wasn't found until 4 years ago, so no medic suspect this could be down to lupus & sjogrens until 2011 when those conditions were diagnosed, the infancy lupus diagnosis recovered, and systemic treatment begun. At that point I got the Lupus Book by Wallace from the Lupus UK website bookstore & discovered about "Lupus Voice" (hard back 2009 ed, p 123). More recently I read the Sjogrens Book by Wallace and learned how that condition also causes hoarseness. These causes of hoarseness have been corroborated by other credible authorities. My systemic treatment plan (hydroxy + myco + amitrip + pred tapers + lots of prescription topical & emulsions, eye meds etc) doesn't help my hoarseness much. Am still relying on rest, pacing use of voice, anti inflammation diet & supplements (inc high daily omegas), good hydration, fresh ginger tea 24/7 (I brew a concentration & use it like squash with hot, warm, cool or cold water). Rheumatology & opthalmology want me to try a pilocarpine trial....via eye drops.

Will follow this discussion with interest

[Dobermanndale]

Hi

Hope you are not feeling too ill this morning.... I have this regularly i also have no voice which comes and goes I have had this for a few yrs but since i was diagnosed with Lupus i have had it every few months it normally passes in about 4-5 days if I dont cough a lot. I find the coughing makes it worse but if u need to cough u gotta cough 😝

Not sure if this helps x

[ShannonB]

I have had issues with this my whole life and was diagnosed with lupus at 12 (I'm now 44). I have never connected the two but do have sjogrens so wonder if they are related.

[Hidden]

I have had hoarseness/dry sore throat getting worse steadily. I have sjogrens, thyroid probs sale not sure which one does it. Use to come and go. Stays now.

[lovelyredhead]

Hi Nanleighh,

I get like that all the time ,it's normally when iv got something coming on ,like a cold ,but I also get it when I'm tired or lack of sleep, and if iv been chatting on the phone longer then 10mins.

Is so annoying ,iv got a under active Thyroid ,I don't know if its connected to that .

All the best.

JACQUI

[Shann07]

I have this chronically & get so fed up with people asking me if i have a sore throat or 'sip lemon & honey'! I am prone to sore throats though but the hoarseness is there alot. Rheummy referred me to ENT & all good! Rheummy thinks its inflammation of vocal cords although since i started steroids hoarseness is not as bad x.

[EOLHPC in reply to Shann07]

Wallace writes in The Lupus Book that this is mainly due to a synovially lined joint in the voice box (aka vocal cords) which is in the larynx. This joint is known as the cricoarytenoid joint. Lupus activity produces synovitis. When the cricoarytenoid joint becomes inflamed by synovitis, a hoarse voice can develop. Of course steroids, eg pred, are great for reducing synovitis....this joint can also be sprayed with steroid aerosol & /or locally injected. Apparently it can be vvvv hard to diagnose this type of synovitis clinically, eg by examination @ ENT (ENT never spotted mine, anyway). Rheumatoid arthritis patients get cricoarytenoid joint synovitis too...google this & you'll find lots of links. My feeling is: your rheumy is right👏👏👏👏👏👏apparently we should always give anaesthetists the heads up that we have the Lupus Voice, because this type of synovitis can make intubation problematic...

[nanleighh]

Thank you for all of your posts, this is very helpful. I have no other symptoms, no URI symptoms, no fever no sore throat along with the hoarseness. It's interesting that most of you also have Sjorens syndrome, that's what he thinks I have due to dry eyes as well, He wants me to try pilocarpine to see if that will help. I am reluctant to take it is you have to take the pills four times a day and I'm already taking prednisone and hydroxy. Has anybody else taking this and it's helped? The other thing is I'm a telephone triage nurse who talks on the phone all day long So I'm wondering if I have voice strain along with it. thank you all for your wonderful advice and support.

[EOLHPC in reply to nanleighh]

My consultants are saying I should try a pilocarpine trial too...they are thinking the eye drops version of pilocarpine is best in cases like mine. Have your Drs suggested the eye drops? They seem easier to take. My ophthalmologist at the NHS eye clinic said just to expect the pupil to decrease in size, which means less light gets into the eye, but she said this is not a problem for patients. I'm going to discuss this with rheumatology later this sept

As to voice strain: I tend to think that the more I talk, the more hoarse my voice is. But, after years of this problem, when my voice was hoarse even while off work sitting silent & dizzy on my sofa asleep much of the time....I decided this hoarseness wasn't just down using my voice a lot

[Musicteach]

I teach singing and had a professional career until UCTD struck. I still teach and some days are fine, but often my voice is badly affected. I have had vocal chords examined and they are fine...no nodules, so put this down to sjogrens and cricoarytenoid problems. And as I basically teach breathing for a living, I know I am sound there! I have found lemon and honey helps a bit...Biotene is not so good, but Vocalzones, (from Boots, a drug free pastille used by singers and actors) really helps. They taste a little as I imagine creosote must taste..but they do the trick for quite a long time. Hope this helps!

[littleeffie]

I have been having trouble with hoarse then squeaky voice for a few years and can't talk for more than a few minutes before voice disappears .I was told it may have been damage during thyroid cancer operations but none could be seen with camera .I do have Sle and sjogrens amongst others so having read the above will be asking rheumy about it rather than my oncology or ent .dept..So thanks for posting answers.I suppose we get so many symptoms we don't get round to all of them.

[Hidden]

Yes,I have. It was really bad around the start of my Lupus.Finally subsided after a few months,and hardly have the hoarseness anymore.

I don't know if it is related to my Lupus or not.Just know it came about soon after I was diagnosed. Hope this helps.take care

[Hidden]

Mine started after an extremely bad virus hit the muscles above my vocal chords 2 years ago. My throat nearly closed off and I thought I actually had pneumonia because I could hardly breathe. Unfortunately I was on holidays out of the country so didn't dare go to the hospital (had insurance but at the time there were nightmare stories of people ending up not being covered after the fact) and even had to delay my return flight home by 3 days.

Anyhoo, after I returned home to Vancouver, I had to wait 4 months to see an ENT who explained that it's the muscles above my chords that are now "quivering" when I speak. He said it was some big long name and was common. He also suggested speech therapy (which isn't covered under MSP) or just live with it and get lots of rest and try not to get stressed or talk much. Yah, riiiiigghhhhtttt!! So - my voice is just like this permanently now :).

Just drink lots of water, stay away from smoky places, and let people tell me I have a sexy voice! lol.

Never knew it had anything to do with my Lupus, though. I'll ask my Rheumatologist next time I'm in to see her. Thanks!