I don't understand it, I saw the swab and it was yellow. Now what? Anyone have any ideas here? Tuesday was the last day of my Z pack, which I guess did no good anyway since there was no bacteria. My ears are unblocked and my lungs seem to be OK, but I still have horrendously thick drainage running down the back of my throat. If I let up on the regimen below, the productive cough fires up again...

The ENT Nurse Practioneer said she felt it might be related to Sjogren's... Great. Isn't there anything else I can do to relieve this? Or are you just stuck with it if you have Sjogren's? This is really miserable.

Here is what I am currently on for this stuff:

Nebulizer w/Pulmicort and Xopenex 2 X daily
20 mg Prednisone
Mucinex
Irrigation-3, sometimes 4 times daily-Using Sinus Rinse and a couple of drops of peroxide (I even broke down and used Alkalol, which burns like fire)
Singular-Pulmonary doc ok'd starting today

Thanks,
Cathie

Cathie,
The Sjogren's website for the forum is www.sjogrensworld.org.

Mucus is one of the products of Sjogren's. The body produces mucus on a daily basis and with Sjogren's sometimes the mucus gets really thick and gross. The ragweed, pollen, mold thing is really bad in Texas right now and it makes the mucus even worse because the body tries to produce more mucus to deal with the allergens. The only thing I'm finding that does any good is lavage and something to moisten like the Saline Spray. Even then it's still bad, ..but my sed rate is still up so I'm not sure what to tell you. You might try stopping the household scents, perfumes, perfumed bath washes, perfumed soap, etc. (thought you already did but wasn't sure).

Wish I could help more. And no, you don't ever get really used to it.

Billye

Thanks Billye... I have about lavaged myself to death tonight. I did try the Alkalol, although at first, the odor bothered me.

Boy, it sure cleared out the mucus. Trouble is, after a while, it comes back. I cannot imagine how in the world I am going to cut my steroid dose like this. Cutting the dose usually results in some sort of flareup, and it looks like the lungs/sinuses, etc. are the draw of the month...

Cathie

Do you know if they were just looking for bacteria, or did they also try to culture viral and/or fungal pssibilities?

Many people who start out with infection in that area from one type of minature pathogen wind up with oppotunistic secondary infections that take over and crowd out the original . . .and can be really hard to get rid of . . .

You know when you get an upper respiratory thing/infection, it is typical for the cells to keep producing mucus long after the infection is over. This can be for 2-4 weeks.

I have some misgivings about OVER use of the Netti pots. Basically tears and other secretions contain natural antibiotic substances, and washing them away with chemicals seems rather harsh and non productive to me.

Certainly if you get a snoot full of dust/ or other chemicals from the environment, a netti may be helpful. But 4 times a day? The burning side effect, I would pay attention to..and avoid whatever burns. I think Cathie you could be overdoing things. just my opinion.

Cathie,
I agree with Mrs. D,
I only use my sinus wash maybe once a day or sometimes every other day. I know the mucus is hard to bear but overwashing will make the nasal passages too dry. The body produces mucus for a reason. I'd listen to your body. Course, that's just my opinion too.

Billye

I'm a Sjogren's gimp (mine is severe, systemic, and accompanied by a slew of other autoimmune issues) with 3 years of med school behind my broken back, so... this is just my opinion as a med geek but even moreso as a sufferer that has had all kinds of Sjogren's problems.

I agree that you definitely don't want to overdo the sprays... rhinocort, pulmicort, etc... if you use too much for very long, your body gets tolerant and stops producing its own corticosteroids, so... careful and conservative with that and prednisone!! Even the nasal spray will deliver some to your bloodstream, just like injections of it at the joints (which I've had)...

Mucinex=good stuff. If you have Sjogren's, I recommend taking it every day-it is good preventative medicine for Sjogren's, allergies, and even smoke exposure (first or second hand) as it keeps the mucous thin and less likely to get infected... depending on how much you're already taking, 4 a day of them is perfectly normal, and honestly, you can go really high for it-they give megadoses for fibromyalgia, for example, with very few people having side effects aside from a runny drippy nose, which you'd probably kiss the ground in New York City to have right now.

Try Theratears nutrition--it's a supplement made by the same people whose eye drops my eye docs swear by (and they're big on the supplement, too)-very highly controlled marine lipid oil, flaxseed oil, vitamin E... good for eyes, nose, throat... BUT only take 1 a day, not the 3-you don't want to overdo the vitamin E in particular.

If you are taking supplements by means of vitamins, they could be causing problems... even Vitamin C pills are a big bad no-no (I teach college Nutrition classes... while vitamin C in JUICE is great-it's an antioxidant etc-in pill form, it's actually a pro-oxidant that can do a lot of harm). Folic acid, on the other hand, I would recommend...

If you have Sjogren's (I can't tell from this post whether you do or whether it's just a possibility), a couple more things could help: Plaquenil (an antimalarial DMARD) and Evoxac (which stimulates the parasympathetic glands, causing spit and to lesser extents tears and mucous to be produced in better levels). If the prednisone is chronic, please, for your bones' sake, taper the level down. If it's just a dosepack, 20mg is alright. You don't want to stay on that for long at all if you can help it, though 5mg/day is an okay amount in the long run to prevent more problems...

Sorry this is so disjointed; I'm having a bad flare-up and very distracted by my digestive tract being kind of ... upset... today, so I'm typing in a hurry so I can race to the bathroom in case it (again) catches me off guard.

Feel free to email me if you have questions about anything related to autoimmune illnesses.

Oh yeah, I'd also be really interested in knowing the kind of full span of your issues-do you have vertigo type things going on along with this? Reason being my sister went to a fabulous ENT that made her realize her own sinus and ear issues were from 2 different things-one she takes rhinocort for, the other she has to do exercises for to shift these yucky granules in her ears around until they get flushed out. With Sjogren's, the granule type things is a common side problem, so I thought I'd see what is going on in your head besides just this little snippet my google alert linked me to!

Hope you feel better pronto!!