Author Topic: Excess Mucus  (Read 16942 times)

kellijo73

  • Guest
Excess Mucus
« on: January 24, 2011, 07:51:19 AM »
Hey, all!  I am new on here, and could use a little support.  I was diagnosed with sjogrens a little over three yrs ago when the doc removed a large mass from my right cheek.  Thought it was lymphoma, but turned out it was "borderline" lymphoma - not enough B cells for a dx but too many for the doc's liking.  Anyway, biopsy showed SjS.  Been on plaquenil, and now methotrexate for RA.  If the dry mouth, eyes, and nose were not bad enough, now I am having HUGE problems with all this nasty mucus that forms in the back of my throat.  I find myself actually vomiting every day in order for it to clear out. (I know, TMI, sorry!)  Just wondered if anyone else has this problem.  I'm about at my wit's end.  I use my neti pot daily (except right now, my nasal passages are so raw that it burns to use it.)  Any suggestions?
Thanks.

quietdynamics

  • Hero Member
  • *****
  • Posts: 2399
Re: Excess Mucus
« Reply #1 on: January 24, 2011, 09:23:08 AM »
Sorry about your distress. I would go see the Dr. you might need antibiotics. And it sound (from the burning) that you have inflammation.
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

schika

  • Newbie
  • *
  • Posts: 12
Re: Excess Mucus
« Reply #2 on: January 24, 2011, 09:53:15 AM »
kellijo73!
What you described is exactly what was happening to me 2 years ago. I tried giving up gluten, and the excessive mucus that was making me vomit stopped immediately that day. After months of avoiding gluten, I tried a small bite of bread, and immediately the yucky problem was back. Everyone is different. Good luck!

Crymeariver

  • Guest
Re: Excess Mucus
« Reply #3 on: January 24, 2011, 10:12:12 AM »
I had a horrible mucous problem several years ago.  It was so bad I was choking at night like I had sleep apnea. It was gobs of mucous.  I even did an over night sleep study but since it wasn't true apnea they couldn't help me.  At the time I really wish I had gone to an Ear, Nose & Throat doctor.  I think mine was an infection or irritation of the adenoids.  I have to admit it wasn't green like it was infected but it was copious.  As my oral surgeon would say: get thee to an ENT.  It lasted 6 months to a year.

Your can try somethings to ease production. They say milk products causes excessive mucous too.  Try a humidifer because dryness irritates and can cause mucous.   

I was just dx'ed with lymphoma in my lacrimal gland.  How is your doc following up with your parotid? 

Wishing you luck!  Let me know what it turns out to be if you get it figured out.  I'm still really curious what caused the mucous 5 years later. 

Catilee2

  • Guest
Re: Excess Mucus
« Reply #4 on: January 24, 2011, 11:10:44 AM »
Hi,
    I have something similar with the mucous in the throat/upper chest region.  I drink extra liquids, stay away from cheeses and other fatty dairy products. I also now drink lactose-free, low-fat or nonfat milk.  I also take mucinex (sp?)  when it gets really bad.  If it goes yellow or green and I get a cough, I go to the Dr. to get checked for an infection(sorry,TMI).  Winter with the drier air has always aggravated it.  I hope you can get rid of it so you don't feel nauseous all the time.

Catilee 2

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13460
Re: Excess Mucus
« Reply #5 on: January 24, 2011, 01:01:04 PM »
I have had a lot of mucus for about 11 years now which really confused the docs for a long time. I have been irrigating 2-6 times a day---actually, around 2 times now after getting diagnosed with other stuff.

I found a good ENT and the key to a lot of this stuff is having the throat and mucus cultured. I have had infections for years and many of them. I was finally diagnosed with low t-cells in 2006 which is why I had all the infections. The other thing is that people with sjogrens make weird mucus that doesn't support the growth of the normal oral bacteria. This, in turn makes us high risk for infection. It is really a vicious circle.

I just finished one year of nasal instillation's of Bacitracin powder mixed with saline. I had to put 5 cc's in each nostril with a syringe two times a day. At first it keep the infections down but after a few months they started in again. I had been just about desperate this last couple of months. I was on clarithromycin 500 mgm once a day for 60 days and still had infections.

I finally asked for a referral for a second opinion and that doc put me on a nasal nebulizer twice a day. I mix 2-5 cc ampules of sterile saline with a premixed packet of Mupiricin (liquid bactroban as in ointment put in nose for MRSA) and this has been interesting. It feels so good. Doesn't go in as a liquid but as a mist. I do have to irrigate once a day yet with the saline/soda mix to keep the nasal passages softened up. I do this in the morning before the first nasal neb.

This is a costly thing for me as medicare doesn't pay anthing towards it. I told hubby I will just have to make adjustments in our financial planning---something that is getting more common all the time.

I am finding that I am having less mucus---only thing I can figure is that either the mupiricin is killing off bacteria that are hiding in my passages or I make more mucus when I irrigate more with the saline/soda as they can irritate. Who knows, but I will be happy if this continues to work out.

Another thing I want to mention is the fact that I have a swallowing problem associated with my myasthenia gravis. The docs have finally decided that my inability to propel or move the mucus normally due to poor muscle strength in my palate and tongue. Also, the thick sjogrens mucus adds to the problem. People with sjogrens can also have some neurological problems which can affect their swallowing ability.

Whenever a person has an autoimmune disease along with way too much mucus that is interfering with their life, they should ask their doc to do an acid fast culture. This is a culture that is looking for the weird bacteria like TB or other associated infections caused by mycobacterium. I had a form of TB called Mycobacterium kansasii that was not a contagious disease and was a second cousin to the more virulent/dangerous TB.

The docs were dumbfounded that I had this because it is usually found in people with immune deficiencies or HIV. I had to be on 3 different antibiotics-8 pills a day-- for one year. It was after this that I was diagnosed with the low t-cells which are related to the autoimmune disease. We can have Sjogrens, but we can also have a lot of other stuff that tags along. We have to keep digging and finding the docs who can help us. Don't be afraid to ask about different testing.

Knowing what I know now I would advise anyone with autoimmune disease who is having a lot of infections to ask to have blood drawn for immune deficiencies. This involves testing the IgG levels, and the white cell counts broken down into the b cells/t-cells,etc. If your doc won't do it maybe try finding a hematologist who will listen to you and work with you. Good luck. Sorry this was so long. Irish ;D

chelle

  • Guest
Re: Excess Mucus
« Reply #6 on: January 24, 2011, 01:17:48 PM »
When the mucous in my throat gets so thick it feels like it's choking me at night I take bisolvon (bromhexine hydrochloride) which is a cough mixture for chesty coughs. It's aim is to thin mucous. Takes a day or 2 to become really effective.

kellijo73

  • Guest
Re: Excess Mucus
« Reply #7 on: January 24, 2011, 01:28:07 PM »
Wow, I actually want to cry when I read that others have had the same problem!  I had a baby a year ago (my 4th) and throughout the whole pregnancy I was seeing an ENT who was cleaning out my sinuses once a week because I couldn't breath through my nose at all!  He did a CT of my sinuses but never did a culture the whole time I was seeing him.  I finally quit going because I just could not afford it and the neti pot seemed to do the trick for a while.  I think I will see about getting a culture and some more blood work.  I am due for my six month work up from my PCP anyway, so I will see if we can add a few more.  Sometimes I think my husband thinks I am crazy when I am crying because of "snot" and it is so frustrating!    I was diagnosed with sleep apnea and started sleeping with a mast a few nights ago and this has made it harder to breathe when my throat is so clogged up.

As far as my parotid goes, i had a 4.5 cm mass 3 years ago.  They went in and did a parotidectomy but could not remove the whole tumor because it was entangled in the nerves above my eye.  Right after surgery, the ENT who did the surgery said it was MALT lymphoma.  We were prepared to start Chemo and radiation.  Even went to the surgeon to have a port put in.  (In the mean time I had every person I know praying for me and people I didn't know, too!)  The oncologist called me back a week later and said that the final path report came back negative.  Said that there was a very large colony of B cells and if there had been just a few more, he would have called it + for Lymphoma.  Instead, they were just calling it sjogrens and wanted me to keep an eye on things.  That was three years ago and because I moved and insurance changed, I have not been tested for it again. Makes me a little nervous.  I have now also been diagnosed with rheumatoid arthritis, along my my thyroid problem of 17 yrs an dmy sleep apnea.  This is not fun.  I am a full time nurse with kids from 1 yr - 19 yrs old.....I am plum worn out. 

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13460
Re: Excess Mucus
« Reply #8 on: January 24, 2011, 09:39:45 PM »
keelijo, Welcome to our boards. You sure sound like a typical autoimmune sjoggie--whatever that is.lol

You are very typical in one aspect. You have other autoimmune disease besides the sjogrens. You have the RA and I would bet a nickel that if they would check your thyroperoxidase levels and other levels you would be diagnosed as Hashimotos or the autoimmune thyroid. I had the hypothyroid for many years before I was diagnosed with the Hashimotos. My immunologist says that people will get the thyroid disease (either hypo or hyper) and if they aren't Hashimotos right at the beginning they will convert to Hashimotos down the road.

I am another RN who worked with this stuff. I have probably had the sjogrens, myasthenia gravis since I was around 20 years old. I think the thyroid started in my late 30's and the Bullous pemphigoid came in my 50's. I also have severely low t-cells related to autoimmune issues that started in my early 30's and got progressively worse over the years and wasn't diagnosed until 2006.

I don't know how you are managing to work full time with a family and especially with a baby. I was never able to work full time as I would get so exhausted and then I would get sick or go into a flare. Something I did not realize until much later in life. I usually worked around 7-8 days a pay period. Sometimes I would pick up extra days. Although, I did teach nursing assistants and would work an eight + hour day and then teach the 5 hour class. Made my days 6:30AM til 9PM. Those days were terrible. Sometimes I don't know how I managed to drive home I was so exhausted.

I will recommend that you ask your doc about the plaquenil if you are not already on it. Also, you sure need to get checked for the Malt again to make sure that you are still in the negative range. I know that it is a hard row to hoe, but if you manage your time and with the use of medications you might be able to continue working this much.

I would assume that you have some help from your kids as some of them must be older. I know that it is difficult, but if you are able to cut back on your hours now you may be able to prolong the length of time you can work. I worked until I was 60 but it was beyond hard. I was working longer hours for a couple of years in a job that was a lot of walking. One day I got up and told hubby that I couldn't do it anymore. I quit that day. I thought I would be able to go back, but that has never happened and never will at my age. I miss it.

The main thing is that you need to have your rest plus you need to avoid stress. Avoiding stress is so hard in this day and age. If you turn on the TV in the morning you will find stress.

Now, tell your hubby that I can relate to the mucus stuff. I have not slept good for 11 years---since the mucus issues started. I have spent a lot of time with my head hanging in the sink coughing and "garping" as I call it. Many infections including much MRSA, klebsiella and other pathogens and then a whole bunch of infections from normal flora that overgrow and make me ill. Tell hubby that I have called myself "pus bucket" for many years due to the many infections I have had. As I sit here at the computer I have spent a lot of time after supper trying to clear out my airway. Irrigating, gargling, rinsing mouth, using steroid nasal spray, etc. It gets to be a full time job sometimes.

I have been up til 2-4 AM for many years with my mucus. Seems to get worse at night. Probably because I drink a lot of fluids and it starts to loosen up later in the day. Also, I probably have more muscle weakness later in the day. By the way, you can buy a generic guiassifen tablet 400 mgm's in pharmacies, Walmarts, etc much cheaper than the Mucinex. This is what I have used some and it seems to help.

Hang in there! There is strength in numbers and people are here to encourage you and listen when you want to rant and rave. I maintain that this site has saved a lot of marriages!!! 8) 8) Irish ;D

warmwaters

  • Hero Member
  • *****
  • Posts: 1872
  • Just keep swimming - Dora
Re: Excess Mucus
« Reply #9 on: January 25, 2011, 02:05:32 PM »
My problem occurs in the morning. I get up, and if I do anything where I bend over from the waist (like putting things in the dishwasher, brush my teeth), I start getting waves of mucus going down my throat. I start coughing to clear it, and can't stop. If it's a bad day, it least to what I call "hair balls" - cough the mucous into the sink, or vomiting.

Really unpleasant way to start the day.
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13460
Re: Excess Mucus
« Reply #10 on: January 25, 2011, 11:03:56 PM »
warmwaters, I think it might be wise to try irrigating your nasal passages right after you get up. This could keep you from having so many mucus issues. If you clear that stuff out right after you get up the morning might go better. If you haven't used a neti pot youo might want to buy one and use it. Cleaning out the nasal passages and sinus areas cuts down on the bacteria which in turn cuts down on infections. Irish ;D

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13460
Re: Excess Mucus
« Reply #11 on: January 25, 2011, 11:05:42 PM »
kelli, I don't know what you irrigate your nose with buy you might want to try cutting down ont eh saline/soda amount that you use in the rinse. I find that I just can't take a whole packet every time as it dryes out my mucus membranes and burns more as time goes on. Irish ;D