Sjorgrens

[donnabrain]

Am using a mouthspray,but lately getting food stuck in throat a lot more frequently,and throat becoming very sore because of this.

Any tips please

[barbdockeray]

hi I use gel before I eat helps me ..it seems to make eating easier .

[weathervane]

I find taking small sips of water helps when eating especially if dry food. My saliva has got very thick and catches in throat so have to cough alot can cause sore throat. Does that happen you as well??

[donnabrain in reply to weathervane]

yes,this happens also

[LuckyJC]

May not be related at all but along with my 'possible lupus and sjogrens' I have been diagnosed with eosinophilic oesophagitis, a rare allergic condition that causes among other things swallowing problems and food getting stuck in your throat or oesophagus. Just wanted to mention as almost no one has heard of this disease and my gastro swears the diseases are not related but I don't believe him!

[Hidden in reply to LuckyJC]

I have Sjogrens and have this too. Sometimes my oesophogus shuts right down like a hammer and I have to keep calm when this happens, breathe slowly and sip little bits of water until it eases. My tip is to mainly to eat sloppy moist foods now and have a large glass of water close by to keep things manageable. This seems to work okay for me. The gp says this and hoarse voice plus dry cough are all part of Sjogrens and I know this. But I think I have reflux/ GERD and that's the real problem rather than lack of saliva. Although, like Weathervane, my saliva is always thick and salty these days, so maybe it's about quality with SS rather than quantity? I've heard there are meds that help with moisture production. I plan to ask the rheum about trying one because I'm starting to feel like the Sahara desert!

Ps never heard of eosinophilic oesophagitis but very interested to learn more thanks for telling us. How did you find out - gastroscope?

[weathervane in reply to Hidden]

What meds do they suggest for saliva? Have googled and i seem some suggested also used for mucus cough, i have tried these with little success😩

[Cas70 in reply to weathervane]

Please see my reply to donnabrain - also I bought XYLIMELTS from TheMouthUlcerShop on line - pop one on my gum and it keeps me from dry mouth all night. Found that in Sjogrens Society magazine. Good luck

[donnabrain in reply to Cas70]

thanks,I shall give them a try

[notoverthehill in reply to Hidden]

I take Esomeprazol fo reflux and this keeps my swallow moist and less sticky food and choking. I only found out that it does work

Not overthe hill Jean

[Hidden in reply to notoverthehill]

That's good to know - I was just wondering about restarting Lansoperzole or Ranitidine. I stopped because I wasn't getting any gastritis pain really but have recently made the connection between reflux and dry cough, hoarse voice abc trouble swallowing. Thanks.

[LuckyJC in reply to Hidden]

Yes, I went to gastro after having 6 months of bronchitis and pneumonia and a cough which wouldn't go away. I think that was probably the start of the 'possible lupus' but the hugely patronising gastro said 'I think it's all in your head and you should see a psychiatrist, however we'll do an upper endoscopy just to humour you'. It looked normal visually but they took biopsies and that showed the eosinophilia. Treatment varies in the UK as it's so rare or at least not recognised and even the specialists don't agree on diagnostic criteria (GPs have never heard of it). I was first tried on a swallowed steroid which didn't work, and then moved onto an elimination diet with the help of dietitian at Guys Hospital. Eosinophilic Oesophagitis is thought to be a food allergy but doesn't present/show up in regular allergy testing usually. So the elimination diet is a process of trial and error until you find the problem food. My symptoms have greatly improved since I started the diet, but when I reintroduce dairy I expect that will be the culprit xx

[donnabrain in reply to LuckyJC]

What an arrogant so and so, hope you are receiving better treatment now

[LuckyJC in reply to donnabrain]

I am thank you, I'm now seeing specialists in it and the dietitian has been brilliant. It's amazing the damage that overly confident consultants can do...

[donnabrain in reply to LuckyJC]

had never heard of this,but have now googled it, think I may have this and I bet you are right, I bet they are related

[Hidden in reply to donnabrain]

Me too! I've had upper digestive issues all my life and allergies to just about everything over my 53 years - including three RA drugs. The surgeon who conducted my gastroscope last year didn't pass any comment about the reflux at all on my notes or to me in person. But the theatre nurse did and showed photos of staining which she said would be stored on my notes. But they are nowhere to be seen. My gag reflux was so bad that I passed blood clots in my mouth for th first week afterwards.

[donnabrain in reply to Hidden]

Ooh poor you x, sounds like they didnt give you enough sedation

I have had three with various degrees of sedation and one was pretty awful,one not too bad,and one I have no recollection of at all

[Hidden in reply to donnabrain]

I was an inpatient at the time but surgeon refused to sedate me. I fought like mad for it with support from nurses and hospital doctors and he finally agreed - saying he would be forcing a great big camera down my throat ha ha! The ward sister showed me photos of reflux staining but implied he couldn't get that far down because even sedated I struggled. Asked various GPs if it showed this reflux but he hasn't mentioned and photos "not available". Wrote to hospital much later to complain and they spoke to surgeon who said reflux staining such a common finding that he wouldn't have bothered mentioning. I wrote back to pals saying that for some connective tissue diseases GORD is on the listed diagnostic criteria so of course it matters!

[Fennella02]

I'm not diagnosed with Sjogrens but I do struggle with my swallowing. I choke a lot too so was referred to SALT for assessment. I have been given a list of 'danger foods' which I must avoid. It's a bit restrictive for a vegetarian such as me but it does help -

[Cas70]

I had most awful coughing fits and difficulty with my throat. I was recommended to take Turmeric (or to have an inhaler!?) I chose the Turmeric. My coughing decreased that day and every day until after 10 days I don't cough. Before anyone posts the "check with your Docs" it was my Doc that suggested it. Used all the time in cooking, this is the best way to take it. I heat 2 parts Turmeric to 4 parts water. When it is simmering it thickens, add honey or coconut oil. Keep in fridge for over a week. I mix it with milk which makes a lovely drink or over cereal. H & Barrett sells capsules of the powder do not take tablets - not pure Turmeric.

[weathervane]

I was doing some googling and its is suggested that Guaifenesin which is used for a mucus cough helps with thick saliva. It needs to be used at a higher dose than is in cough medicine. I have tried the cough medicine without success but i will discuss it with GP to see if can get it in tablet form . I constantly have to clear my throat which is annoying, i take omeprazole so i dont think its reflux

[donnabrain in reply to weathervane]

interesting