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mrtmeo
10-06-2014, 12:23 PM
Sorry if this is gross, but my mom has been coughing up a mucus blob a medium yellow color daily with guaifensin.
Am wondering if this is the color of the mucus coughed up from tracheal stenosis or sinus issue due to vasculitis?

She used to have the post nasal drip, but it has turned into a thick glue like mucus instead.

annekat
10-06-2014, 03:32 PM
Sorry if this is gross, but my mom has been coughing up a mucus blob a medium yellow color daily with guaifensin.
Am wondering if this is the color of the mucus coughed up from tracheal stenosis or sinus issue due to vasculitis?

She used to have the post nasal drip, but it has turned into a thick glue like mucus instead. I'm not sure that the color would indicate whether the mucus is originating in the lungs, bronchii, trachea, or sinuses. All I can say is that the mucus that I cough up or that comes out in my nasal rinses is a variety of colors. Medium yellow is pretty typical. In my case, I'm pretty sure the mucus originates in the sinuses, or nasal cavity really, since I don't have any sinuses left. It drips down the back of the throat and collects down in my bronchial tubes. Guaifenesin has helped me to cough this up many times, when it got to be too thick and stuck in there, making me sound at times like I had a horrible wheeze or asthma. The good news is that I no longer need to take guaifenesin, because the mucus has become thinner on its own and much easier to cough up. It can still vary in color from medium yellow to greenish yellow, and I still think it comes from the nasal cavity. I had a breathing function test the other day and it didn't indicate anything abnormal as in the case of stenosis. It took a long time for this coughing situation to improve, and may with your mom, too. I hope that is all it is, and not stenosis or lung issues. If she keeps with the guaifenesin and stays well hydrated, she may get the improvement over time that I have. Having said all this, there are days when I'm stressed or run down from life's activities, lack of sleep, or whatever, and the coughing gets a little worse again. That is par for the course with Wegs.

annekat
10-06-2014, 03:37 PM
If you were asking whether the color was due to vasculitis, that is a little hard for me to answer. Pre-Wegs, I always thought yellow or green mucus meant an infection. Now I know that Wegs mimics infections, which is why so many docs think we have sinus infections when it is actually Wegs. There may still be some infection involved, which is why antibiotics can help some before we are dx'ed. But it seems that Wegs itself can produce that same yellowish or greenish color in the mucus, and I can't give an explanation for that.

mrtmeo
10-06-2014, 05:53 PM
If you were asking whether the color was due to vasculitis, that is a little hard for me to answer. Pre-Wegs, I always thought yellow or green mucus meant an infection. Now I know that Wegs mimics infections, which is why so many docs think we have sinus infections when it is actually Wegs. There may still be some infection involved, which is why antibiotics can help some before we are dx'ed. But it seems that Wegs itself can produce that same yellowish or greenish color in the mucus, and I can't give an explanation for that.

Hi Anne,
Your explanation really helps.
Even tho my mom was diagnosed with MPA, she could still have a similar symptom like with wegs.
Her first vasculitis symptom was of the nose and ears.
I know the mucus is not coming from her lungs but from her sinuses.
It has just gotten worse and now, she isn't sleeping.
At least before, the guaifesin worked, but it is like glue behind her soft palate and not in her bronchial tubes.
It is not in sinuses where she can blow it out either.
I believe you are right that the vasculitis is an infection, but an infection that has hijacked our immune system.

annekat
10-07-2014, 02:40 AM
I wouldn't say that the vasculitis is an infection, but that infections can occur along with it, as when the ears get blocked and fluids can't be released from the middle ear via the e-tubes as usual, or when sinuses become infected because of all the inflammation, mucus and resulting blockage there. Many of us take Bactrim, which is aimed at our lungs, but may also keep other infections at bay. And there is also the commonly held theory that infections are one of the things that can trigger the immune system to start acting up, as in WG or MPA. But I do think vasculitis and bacterial infection are two different things, though it may be hard to tell them apart from symptoms sometimes. I think most on here would agree. And I'm still not sure the mucus color in vasculitis means infection, though others can chime in.

I think I had a lot of thick mucus around the back of the soft palate and the larynx at one time, before dx. It just stuck there and made my voice terrible and even my ENT couldn't figure it out. I do remember trying to cough it out and not being able to. He put a scope in there and didn't see anything wrong with the opening. I sounded like I had asthma but I didn't think so, and he sent me to a pulmy, who didn't come up with much, either. Between the two of them, I was on steroid inhalers, which helped some, and was also taking 1200mg. Mucinex pills twice a day. Diligent sinus rinses helped, too. I still don't know what was going on, and a bit later, things shifted around and that mostly cleared up, and things got bad in my lungs, which led to my dx.

In your mom's case, her docs should be looking at this and see if anything serious is going on. Or maybe, as it could have been in my case, the mucus just got thick enough to collect there and not go down into the bronchii so much. It is strange how there are so many different symptoms in both these diseases and they keep shifting around. I hope she get some relief from that problem and soon improves in general. Best to you both.

mrtmeo
10-07-2014, 03:10 AM
Hi Anne,
What I meant about weg's being a pathogenic process like an infection.
Thanks for your detailed explanation.

It doesn't make sense that the ENT would look down your nose and not find the mucus behind the soft palate.
I wonder if mucus starts in the e-tube and causes this mucus build up just above the soft palate because the ears have inflammation too?

Years ago, my mom had a similar problem when she went to several ENT's who were not able to find any pathology for her plugged ears and nose sensation.
This is why I scheduled an appt with a Laryngologist to see if he can find the problem.
ENT's only work in the sinus, Laryngologists only work on the upper larynx and pulmonologist deals with the lungs.
If only all of these people could work together.
You mentioned that it took a long time to go away, so maybe that will be the case for my mom, but I do want to make sure she doesn't have any stenosis going on too.

annekat
10-07-2014, 03:57 AM
Hi Anne,
What I meant about weg's being a pathogenic process like an infection.
Thanks for your detailed explanation.

It doesn't make sense that the ENT would look down your nose and not find the mucus behind the soft palate.
I wonder if mucus starts in the e-tube and causes this mucus build up just above the soft palate because the ears have inflammation too?

Years ago, my mom had a similar problem when she went to several ENT's who were not able to find any pathology for her plugged ears and nose sensation.
This is why I scheduled an appt with a Laryngologist to see if he can find the problem.
ENT's only work in the sinus, Laryngologists only work on the upper larynx and pulmonologist deals with the lungs.
If only all of these people could work together.
You mentioned that it took a long time to go away, so maybe that will be the case for my mom, but I do want to make sure she doesn't have any stenosis going on too. Oh, I see, and that makes sense, your view of it being like an infection.

Oh, I think my ENT saw the mucus, and I'm not sure exactly how it was located or concentrated, as I need to brush up on the anatomy of that area. It was more than three years ago and I may not be remembering it accurately. But I know that it affected my voice and made my breathing sound loud, if through my mouth, but no so much when through my nose. What I meant by him not seeing anything was he didn't see a narrowing of the tracheal area, which would indicate stenosis. I think he would be looking for that even though he didn't know I had WG, since people without vasculitis do get TS. He just hadn't seen this exact scenario much and didn't know why the mucus was thickening and hardening in that area so much. I still know the feeling of mucus collecting back there and it being hard to dislodge in any way, including swallowing. But it is just not severe like it was then for awhile. And that part of my symptoms didn't last all that long, maybe a couple of months.... it is more the coughing in general, from the bronchial area, that has taken a long time to get better, with the help of liquid guaifenesin.

There may be specialist laryngologists, but ENT stands for Ear, Nose, and Throat, and ENTs do deal with the throat and tracheal and laryngeal areas. My ENT did surgery on a friend to remove a cancer in her thyroid, because that is located around the throat and he is very experienced in the anatomy of that area, as well as being known locally as a good surgeon. So that is part of his specialty, even though it has nothing to do with mucus or any connection to the sinuses.

As for mucus coming from the e-tubes to collect behind the soft palate, I suppose that is possible as long as the mucus can even get through the tubes or that there is room in them for it to collect. For many of us, it seems the tubes get blocked by the inflammation and things don't pass through them. But some of us have e-tubes that are stuck in the open position, or at least aren't stuck closed, which would allow mucus and fluids to pass. Thinking about the location of the soft palate, I'm not at all sure that my mucus collection was there and think it was more around the larynx. But still need to look at some anatomy pictures. In any case, it sounds like your mom's docs need to look at all this in a little more detail.

mrtmeo
10-07-2014, 07:44 AM
Hi Anne,
My mom did have the hoarse voice and then the wheezing for awhile, but eventually it turned into post nasal drip coughing.
The coughing gradually became all the time until now, where she only has the mucus blob causing her to cough.
The guaifensin eventually gets some out, but just comes back.
I will post an update after she see's the laryngologist.
Thanks for your help.

annekat
10-07-2014, 07:49 AM
It sounds like the laryngologist is a good idea, since he is a little more specialized than an ENT. Good luck to your mom, and I look forward to hearing how it goes.

Dirty Don
10-07-2014, 09:07 AM
Mucous and metaphors...is that mixed...sighs, reaches for coffee, blows nose...green, yellow and a wee bit o' purple would do me just fine...yikes!

loisann11
10-07-2014, 03:04 PM
I had similar problems and went to an ENT. He claimed I had GERD. Said that GERD actually causes more of what looks like sinus issues than real issues. He did give me Prilosec and a Z-Pak since I figured I had an infection. I did get better still have some of the mucus but not as bad. I don't think I really had any GERD but for some of you others ..... oh I din't take more than a couple days of the Prilosec... too many drugs already, didn't need another. Best of luck.

mrtmeo
10-08-2014, 02:11 AM
This is interesting.
Last night I decided not to give my mom any guaifenesin and have given her extra vitamin D and she didn't cough all night and slept.
She coughed some in the morning, but I didn't hear any mucus in her throat.
I haven't worked out yet how much prednisone reduces her vitamin D levels, so will have to test her again and see.
She see's the laryngologist tomorrow and will update after that.

daystarr8
10-08-2014, 04:14 AM
Does vitamin d help with the sticky mucus in the throat/ airway?

mrtmeo
10-08-2014, 06:26 AM
Does vitamin d help with the sticky mucus in the throat/ airway?

Not sure, yet.
will know when I find out what her D levels are at or if it goes away.

daystarr8
10-08-2014, 06:51 AM
Well I have been in remission for 11 years but lately I'm coughing and so dry. I never knew about the vitamin D deficiency but I was extremely low. I started it last week and yesterday I noticed I was breathing much better. Today I feel dry again. I took second dose this morning so I'm hoping I'm better by tomorrow. I sure hope your mom feels better soon.

mrtmeo
10-08-2014, 09:07 AM
Well I have been in remission for 11 years but lately I'm coughing and so dry. I never knew about the vitamin D deficiency but I was extremely low. I started it last week and yesterday I noticed I was breathing much better. Today I feel dry again. I took second dose this morning so I'm hoping I'm better by tomorrow. I sure hope your mom feels better soon.

I hope you get better too, thanks!
Vitamin D3 is the best form to take.
Sept thru April is when D levels go down the most because we no longer get the D from the sun.

daystarr8
10-08-2014, 03:05 PM
Thanks for the info

mrtmeo
10-09-2014, 10:01 AM
ok, went to see the laryngologist who apparently has seen someone with wegener's.
He scoped her throat and there was no stenosis, thank God.
He only heard her cough once and said he thinks it is coming from her lungs, but I listened with a stethescope and could hear it coming from her throat.
He didn't even listen to her lungs nor did he recommend she see an ENT.
He has done studies on acid reflux and the pepsin enzyme, but had nothing to say about whether her post nasal drip is from GERD or not.
I was not impressed.

daystarr8
10-09-2014, 11:49 AM
Move on she is too precious to stay with an unconcerned doctor

mrtmeo
10-09-2014, 01:28 PM
Move on she is too precious to stay with an unconcerned doctor

Yeah, I know, but she is on oxygen and in a wheel chair, so seeing drs is process and I hate wasting time.
However, at least I know she doesn't have tracheal stenosis.

Psyborg
10-12-2014, 11:36 PM
mrtmeo,

Bronchial stenosis sounds A LOT like it'c coming from your throat. They though all my problems were in my throat, until I healed enough that the only place I still had issues was in my chest. See if she can get to a Pulmonologist for a Bronchoscopy or at least a consultation.

mrtmeo
10-13-2014, 03:14 AM
Hi Bob,
I have not been impressed with any pulmonologist she has seen and they know nothing about vasculitis.
She has the post nasal drip, so not sure if it is a sinus issue from the lungs or from the GERD.
If it is from the lungs, she is starting the mofetil and is almost 4 months from the first rtx treatment, so maybe the mofetil will stop the vasculitis attacks.
She has some kind of internal bleed they can't find, too, so will see if the mofetil helps stop the flaring.
She was in a constant flare the 2 months from starting rtx and waiting for the rtx to start working.
I know it can take 3-6 months to bring her into remission and even when the anca ab's come down, we can have symptoms.
I keep her vitamin D levels into the optimum range of 60-80 ng/mL which has kept her from lung infections several years.