no dry eyes, excessive mucus

[emma6]

Hi everyone
just wondering if its possible to have sjogrens without dry eyes? or atypically symptoms?

i've been having major problems with large amounts of thick mucus in my throat constantly for 10 months
its sounds so petty but the amounts are so extreme it has ruined my life and can only go half an hour without coughing it up otherwise it causes me to gag, choke and throw up.

been to over 10 doctors, 2 ENTs, allergists and GI no one can help me or even find anything wrong
have tried 4 courses of antibiotics, allergy tablets, nose sprays, antacids, H2 blockers, 3 months of PPI, (although i have no reflux symptoms) lungs and breathing are normal, all allergy tests are negative.
tested negative to ANA and RF 4 months ago

some of the symptoms i have
severe joint pain knees and elbows (can no longer drive /walk up stairs)
dry nose
morning rhinitis and sneezing
sore throat
trouble swallowing
dead skin on inside on cheeks in morning
exfoliative chelitis
nerve pain legs /restless legs

seems unlikely that i have sjogrens but im so desperate to figure out whats wrong i'd like to try to rule it out.
do you think its worth pushing for testing for siogrens or other autoimmune diseases? any advice /info would be greatly appreciated
thanks so much

[Bigleyj]

Hi Emma6,

Welcome to this forum. Everyone here is so great, really helped me 2 years ago when I was first diagnosed. I'm sure you will get support and advice.

I also have mucus in my throat. I think the symptoms are different for everyone so it is very difficult. For me I had dry eyes for 2 years before onset of other symptoms and then about 8 months for diagnosis.   Sorry I don't have a solution for you but know that you are not alone 😀

I would keep going to Dr and keep telling them what's wrong.  I wasn't happy with my Dr so went to a new one which turned out to be a good thing.  I'll be hoping you get some relief soon.

Cheers,
Jo.

[Pete0211]

Welcome aboard, Emma6.

I had a similar experience before I started to get the dryness. I thought I had a sinus infection for about a month or so, then the dry mouth / sinsuses / throat started, still with the feeling of thick, post-nasal drip and a hard time swallowing, especially at night when laying down for (attempted) sleep. Over the next few months, I started experiencing more and more Sjogren's type symptoms - dry eyes, dry hands, luckily no additional joint/muscle pain nor fatigue.

So, it's possible. I'm not positive for Sjogren's yet, but the Rheumy believes that I do have Primary Sjogren's. Have you seen an rheumatologist yet?

[irish]

My thick mucus started in 2000 and continues to this day. I am still dry and have had tons of cavities and lost all my teeth because of the dryness. The mucus that we sjoggies make is not normal so we have less mucus and what we have is thicker and doesn't contain the correct amount of bacteria, etc.

I have had this problem with the mucus and it has ruined my nights as it gets worse as the day progresses and my evenings and nights are terrible. I don't hack and garp as much as I used to but my sleep is still screwed up and less than I need because of it. I do end up using Astelin nasal spray every night to dry up my nasal mucus so that it doesn't choke me off so I can sleep. Sounds stupid but that is what gives me a little rest.

Also, I ended up being diagnosed with myasthenia gravis in 2006 and the immunologist decided that some of my problem is the poor muscle tone in my soft palate and throat that impairs my ability to swallow mucus and clear it out of my throat.

As was said, Sjogrens is different in everyone but we all seem to have some symptoms that are shared by others. Good luck. Irish

[cccourt1942]

Hi Emma,
   Welcome.
   After reading posts of 100s of people on this forum, I am convinced anything is possible.  Personally, my eyes bothered me for decades before the dry mouth accelerated to the degree it did before my diagnosis.
    Just keep at it, and keep up with all your medical info.
    In the meantime:  Mucinex.  A GP told me to use this, not a rheumy or ENT.  Because it is so drying, I cut it in half (even if it is SR).  I'll take one  (half) at night, and another 1/2 in the a.m.  One must drink lots of water when you take the Mucinex.It works for me.  I do not take this drug each time I feel the thick goop. I wait until it's bad due to the above: drying and drinking lots of water with it.  Hope it will make you a bit more comfortable.
Sjoldier c3 

[emma6]

thank you so much for everyones replies i really appreciate it

unfortunately i can't find mucinex in australia i have tried a range of cough medicines with no improvemnt

forgot to mention i also have celiac disease which increases the chance of other autoimmune disease which is one reason why i feel i need further autoimmune testing but every doctor i see acts like because they have found one thing wrong there can't possibly be anything else.

hopefully i can get rhematoidologist referral this week i have asked before but was dismissed

just feels like i've been seeing doctors and specialists non stop for the last year its just getting frustrating spending so much money with no improvement.

[irish]

With all my long posting I forgot to mention that I had health issues since 1964 and was not diagnosed with Sjogrens until 2003. By then I had lost my teeth and had bad carpal tunnel in one hand. I was not diagnosed with Sjogrens until 2003 and I did not have dry eyes until about 2 months after my diagnosis. We are all different and that makes for difference in symptoms.

Have you seen a neurologist to check out the swallowing and other neuropathy? If you get a good neuro you might be lucky enough to have him put you on some meds that might help. Have you been put on Plaquenil? This med is an anti-inflammatory that could help with the inflammation in your salivary glands and help out somewhat. The drug works very well for joint pain and rheumatoid arthritis patients take it.

Plaquenil is the first drug of choice for treatment of Sjogrens and I would ask a doc about it as you sure don't need to have a Sjogrens diagnosis to get it. Good luck. Irish

[Pete0211]

thank you so much for everyones replies i really appreciate it

unfortunately i can't find mucinex in australia i have tried a range of cough medicines with no improvemnt

Hi emma6,

The generic name of Mucinex is guaifenesin. That might help

[cccourt1942]

During chest coughy syrup in AUS