Hi just wondering, dose anyone else suffer with loosing there voice? I loose my voice about 3 to 4 times a week .

[wanderer72]

sometimes just for a couple of hours but often it's gone all day,I have had a camera to look at vocal chords but they never found anything and put it down to my asthma.

[Barnclown]

Yes: I've never had asthma diagnosed, but for years I've had this recurring hoarse and often whispery voice thing, and I am not a smoker or a drinker.

About 7 years ago my lifelong upper GI conditions flared up badly (gastroparesis/oesophagitis & gastritis) and when I lost my voice during this (no voice for weeks and then very weak & hoarse for several years) I could hardly even talk on the phone. Drs looked at cords etc and tools me everything was fine. They said it could be reflux from stomach, but they did that 24 hour sensor own your gullet into stomach and told me my reflux was normal. So ended up on nexium & domperidone for 6 years. Gradually my voice got a bit stronger, but it is very unreliable, and chatting for any length of time makes it go softer and hoarse.

When I was diagnosed with MCTD and SLE early 2011, I did some reading up and was glad to discover this voice thing is something that happens to some of us, and is often related to upper GI issues

If you're like me, maybe you'll try to spot a pattern in when your voice goes...I know mine goes when I'm in a weary, tired way, which of course is always more or less....

Other than the resting up, the only things that help me are honey in my tea (manuka is best) and sticking to very weak tea and decaff coffee and basically talking as little as poss...

Good luck with figuring your version of this out: hope you'll pass on any tips you come up with

Take care & happy new year

[Gillyg in reply to Barnclown]

This is exactly what happens to me. I find it is the first sign of being very tired and my lupus flaring. Lots of investigations but no real reason for it. So have adjusted to it being a sign. Good to hear I am not alone. Keep well.

[NeeNaw]

This happens to me too and at first I was treated with endless supplies of antibiotics and was diagnosed with an infection of the trachea ...... I had only gone to the doctor through family pressure as although it sounded bad I was in no pain at all in the throat. I gave up on the antibiotics as I had no results from them at all and about 18months later I went to my check up with the rheumatologist and it was a locum that I saw and she said "Oh dear you're in a bad way, I can see you are in pain, you've got the malar rash and the lupus voice" ..... whoa back up ... lupus voice??? There are some who are in this school of thought, I am one!!! It's annoying and it does go away ...... but to me ..... I am stuck with it as long as I have lupus. Apart from being annoying when you answer the phone or in conversation with anyone and you spend more time convincing them that you are ok

[Barnclown]

wow neenaw!

this is amazing: lupus voice has gotta be the best way to look at this

thanks so much for telling us about this!

really helps me put up with loosing my voice!

[LynnHall]

Hi. I'm new to this site; in fact, this is my very first post! I've had problems with my voice since the early 1990's, but that was very much to do with nodules on the vocal chords. My voice was gone for three months and I had to have speech therapy - nothing to do with lupus.

I was diagnosed with lupus on Christmas Eve 2002 (what did Santa bring you?)

Yes, I have had a "throat condition" on and off, but I have never thought that it may be related to lupus. It feels constricted around my throat, like hands squeezing. For the past two years, I have been seeing a homeopath and she prescribed

something for it,which really helps to alleviate the symptoms. I can even sing again! You might like to consider searching on Google for a homeopath near you. I can highly recommend the help I've been given by my practitioner. Since seeing her, the condition has only reoccured twice.

[wanderer72]

First of all apologies for the delay in answering, all this bad weather knocked out our phone-line so I couldn't get on-line. Thank you for all your reply's I have been suffering with this for a couple of years, but since this summer it has been getting a lot worse I was sent to A&E twice this year as they thought it was asthma (I was diagnosed with asthma just before the Lupus came into the picture and they keep telling me it's not typical asthma) and although it is not painful I do get a feeling of pressure in my chest whenever it happens. I have a hospital check this week so I will see if I can get any further with it (I wont hold my breath, it feels like I sit and say "this is what is happening" and they say "that's interesting we will see how things go") It is great to have such a wide community that I can now ask, and hopefully I will also be able to help someone else with there query's. Thanks again

[Barnclown]

good luck wanderer72

sounds as if asthma is significant to your voice problem, but i'm no expert

for what it's worth, since my last reply to your ?, i have been reading up a bit on this subject in The Lupus Book by Dr D J Wallace (i bought it recently from LUPUS UK book shop). on p123 he writes about hoarse raspy voice developing when a joint in the voice box gets synovitis (inflammation) due to active lupus. he practices in the USA, and says they treat this with anti-inflammatory medications, and sometimes spray the joint with a steroid aerosol or locally injected steroids. it would be interesting to see what UK specialists say about this. anyway, sounds like "lupus voice" to me!

take care

[wanderer72]

Hi, saw my rheumy today, he agree's that my voice problems could be related to Lupus and also that the dizzy spells are all connected. He was very good and told me that I have to be firm with my G.P. and make sure that all my problems are investigated individually (e.g. having palpitations and chest pain recently) and that only after other causes are investigated that I can put it down to lupus. He says this is the only safe way to proceed because otherwise they may miss something important by assuming it is the lupus. It looks like I will be paying yet another visit to the doctors, I'm sure they must cringe when they see my name

[MaryF]

Lots or people with autoimmune disorders some times over time develop thyroid related conditions which can cause this!

[Melinda]

My voice has on occaisions disappeared. The last time was a couple of years ago after i had the swine flu. Although my voice returned, it sounded different. My daughters say i sometimes sound like Marge Simpson. Strangely enough, i find i can no longer sing along with songs on the radio.

[LucyLocket]

I was so interested to see this thread as I was going to ask my own question about whether this very condition could be lupus-related.

I was diagnosed in June of last year with laryngopharyngeal reflux after an endoscopy by an ENT consultant which showed up inflammation. I had been getting problems initially with laryngeal spasm and then hoarseness, lots of mucus, sensation of something stuck in the throat and being generally very constricted etc for the past couple of years or so following a prolonged cough which lasted about 4 months. I've never knowingly suffered from reflux or heartburn, not even in pregnancy so I was surprised to say the least. I was wondering if the prolonged inflamed reaction could be something to do with an auto-immune response but this was 'poo-pooed' by the consultant. She prescribed omeprazole to control acid and I had a course of speech therapy to learn basically how to cope with the condition. However, I really hate having to deal with this and would like to find out if it is possible to cure!

Does anyone know of any research which does link this problem to lupus or auto-immunity?

[pirate-yaker]

I have asthma, regularly loose my voice and have just been diagnosed with Bronchiectasis - this answers a lot of questions.

thanx

Malcolm

[NeeNaw]

Just to add to this apparently the school of thought is that due to the fatigue of the muscles during a lupus flare then obviously the vocal chords are affected too

[aberbrothock]

Hello Wanderer72. Yes I experience what you do. I am 72 yrs. of age and have had all my stomach removed due to a cancerous tumour. I no longer produce acid but it's reckoned I produce bile gas which could affect the oesophagus and possibly the voice box. Medication does not work for me due to the poor absorption for me now. It's difficult to suggest how your problem can be treated as different medications work differently for different people. Sorry I cannot help you.

[Herb]

Yes.

It was particularly bad when I had to talk a lot as part of my work.

Drs suggested it could be related to the general dryness (I have dry eyes fairly badly) and I had trials of various sprays such as glandosane. I also saw a speech therapist. I don't have asthma. Do you have to talk a lot? Even talking on the phone or singing can bring it on for me.

[Snowdragon]

A few years back I was told I had fungus on my vocal cords and had a 3 week course of anti fungal tablets.I also suffer with skin fungus,could all be lupus related