Chronic sinus infections, bronchitis, and nasal rinses.

[Bing505z]

Update three years later.

Since i started this thread over three years ago things seem better with my sinuses. I hate to risk waking the Weg dogs but wish to comment that things slowly got better. The last two years I have manage to to get through the winter with no sinus infections or bronchitis.

I think the keys for me are using a Sinus Pulse machine to rinse every day and taking generic Muccinex two times a day to keep mucous thin which reduces the problems caused by post nasal drip. If the symptoms get worse I will increase both. I find this also helps reduce problems from blocked Eustachian tube that reduce hearing in the one ear that still has some hearing with a BTE aid. I can't tell if the tube is blocked in my deaf ear and remember only one infection in it when the ear drum ruptured and drained.

Since Wegs caused permanent damage to the sinuses I will always have some problems from the extra post nasal drip and high risk of infections but I found that frequent rinses with some additives I mentioned in the first post and some use of antibiotics seemed to help things slowly get better. In hindsight I am not sure if the antibiotics were necessary as I developed allergies to a couple of them. My current infectious specialist advised me to wait and see when my BAHA site appeared infected again since it had blood and liquid drainage a couple days so I just continued with my regular daily cleaning of site with MicroKlenz and it seemed to heal up OK.

I am now looking at the Sinus Pulse, since the squeeze bottle type I was using proved to be too aggresive - I would have liquid dripping from my left tear duct for several days after and became annoying. It would stop dripping, and then right after I would rinse again it would start back up. I do not take bactrim (I did when vasculitis first hit, and I will if I have a major upset in the future) but over use of this I fear will prove fatal in the future with an infection which I would no longer be able to fight. Daily, weekly use of antibiotic will prove to be fatal..not an "if" deal..but when. My ENT gave me a tube of Mupirocin, and after a rinse, I take those long tip applicator and dab a little on there and apply it deep into the sinus. No pain, tickles a bit, and along with QNasl, all my check ups look good. I only use QNasl and Muccinex when I start to feel a little bit of a build up. I started using Aurisorb for keeping my ears good and clean, along with Debrox ear drops for debris removal. You can find Aurisorb here: https://www.aurisorb.com/

Here is a good read also:

Granulomatosis with Polyangiitis: To Know the Nose

https://consultqd.clevelandclinic.or...tis-know-nose/

[drz]

Thanks for the good report, drz. You might also try NAC, aka N-ACETYL-L-CYSTEINE, an OTC amino acid that, for me, works better than Mucinex to thin the mucus, so I'm more easily able to dislodge and cough up the post nasal drip that goes into my windpipe. I take 600mg twice a day in tablet form, though I think some take it in inhalers or nebulizers. My new pulmy, whom I like very much, approves of it. It might take a couple of weeks to start working. It is less readily available than Mucinex or its generics, but may be found online or at supplement stores. However, if generic Mucinex is working for you, great! This may be helpful to others, too.


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I will ask my treatment team about it. We are reluctant to make many changes in my meds when things seem to be going along OK. Their idea is don't rock the boat and if it ain't broke don't try fix it.

[annekat]

I will ask my treatment team about it. We are reluctant to make many changes in my meds when things seem to be going along OK. Their idea is don't rock the boat and if it ain't broke don't try fix it.

My new rheumy had not heard of NAC. My new pulmy, had, and approved it. These two are the replacements for my old GPA-treating doc, a pulmy whom I really never liked and who has since retired...yay! However, I think the new pulmy, although younger, seems a little sharper and more GPA savvy than the rheumy. I first read about NAC on the forum and know our friend Jacquie (Booknut) likes it for her non-GPA lung and breathing issues. But I agree, if it ain't broke you needn't necessarily fix it.... I just find that I don't cough nearly as much, and if I don't take it, I feel that stuff building up in my windpipe again. If Mucinex does that well for you, no problem, and for awhile I was taking the liquid guaifenisen, same med as in Mucinex, which I thought worked a little better, but was more expensive and I had to make sure it was marked as Expectorant without any dextromethorphan (DM) added to it as a lot if cough syrups do. I think if you drink plenty of water with your Mucinex it will work best, and that may be what you do and I didn't do.

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[BookNut]

I had forgotten about baby shampoo. Will start that again. The one thing I might suggest is NAC by NOW Foods from Amazon. I take two 600mg capsules a day. Thins my mucus nicely and doesn’t give me heart palpitations like Mucinex.


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[annekat]

I had forgotten about baby shampoo. Will start that again. The one thing I might suggest is NAC by NOW Foods from Amazon. I take two 600mg capsules a day. Thins my mucus nicely and doesn’t give me heart palpitations like Mucinex.


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I take the same amount of NAC as you, daily, and really notice if I forget. But my new pulmy's nurse, when writing up a list of my meds and supplements, wrote it up as being in some sort of inhaled form. So I'll have to ask next time I'm there. I am just the last few days having more trouble with seasonal allergies than usual, seeing as I have my two usual inhalers, one a steroid and the other albuterol as a rescue inhaler. I think it is partly stress from evicting a tenant and not eating right. My new pulmy agrees that stress can trigger asthma, and also doesn't go along with my last pulmy's theory that a Weggie shouldn't be having asthma or allergy symptoms because of all the immunosuppressants we take. I like my new pulmy.




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[BookNut]

I take the same amount of NAC as you, daily, and really notice if I forget. But my new pulmy's nurse, when writing up a list of my meds and supplements, wrote it up as being in some sort of inhaled form. So I'll have to ask next time I'm there. I am just the last few days having more trouble with seasonal allergies than usual, seeing as I have my two usual inhalers, one a steroid and the other albuterol as a rescue inhaler. I think it is partly stress from evicting a tenant and not eating right. My new pulmy agrees that stress can trigger asthma, and also doesn't go along with my last pulmy's theory that a Weggie shouldn't be having asthma or allergy symptoms because of all the immunosuppressants we take. I like my new pulmy.




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I have heard that the inhaled version of NAC has been discontinued. Many folks on the bronchiectasis fb groups are upset about it. I hope your stress goes away and you will improve soon. Glad you like your new pulmy.


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[Helen]

Helen, the ENT you are seeing sounds sadly mistaken and stubborn, and I think you need to find another one. Check the Vasculitis Foundation website to see if there are any specialists listed that you could travel to see, or tell us your general area and maybe someone can suggest one....

Dear Annekat- it took me some time to reply, as my ENT appt. was truly horrible, placing me into a slump that you would not believe. The Dr. would not share the video of the painful nasalscope that he streamed to his computer - to who? where? what? His staff said they do not provide copies to patients. I am disallowed to see, nor a copy, regardless he claimed (after the fact) that he was just a "Generalist dr." and not really an ENT!? which made NO sense as his billing showed all the ENT procedures he performs. SO, why does he need to keep my expensive streamed video then?... that Im disallowed to give to another ENT?
He also denied me a nasal biopsy as well, to get this simply checked because he claimed Wegeners only have massive GREEN crusting and not bleeding, obstruction blood crusts (that I have). I also have a hole in my septum, but he quickly assumed it to be from prior surgeries regardless he never read any of my prior history or reviewed past CT or MRI imaging (reports).
What is the harm to even do a biopsy? I don't get it. Just why not? I had a basic nasal swab 2 yrs ago that had signs of staphylococcus (STILL no one did anything).
Did you have an actual sinus biopsy cut out, or a nasal swab? Was it painful?

The Dr's behaviors in my care have been demoralizing.... I just do not know what to do anymore, because now the (ignorant) ENT's report went into the computer medical portal system. Therefore my PCP claims, "I cannot refer you to any rheumatologist because the ENT did not dx you". (Regardless i've become deafened with blood occasionally coming from nose, anosmia, elevated wbc, arthritis in joints etc.)
Are they waiting for me to become blind next? My issues are so obvious that needs to be evaluated - This is NOT normal. What MORE is required to be listened to?

SO - back to square one, to not do anything until my symptoms require hospitalization again, I suppose? There were other members here who said to just go make a Rheumatologist appt. yourself through the Vasculitis site. I need to stress, that I TRIED!! but the Schedulers disallowed it, by stating their OWN dx of my issue over the phone!- assuming "Allergies". After asking me for "Name and Date of Birth" to look up my file in the portal computer system, to deny me an appt. with the Rheumatologist! I was stunned from the total inappropriate, unbelievable situation of having unknown receptionists denying me an appt. just by using their own dx/assumption about my issues without knowing me. I have private $$$ health insurance and can't use it. It's bizarre.
Is my explanation on this clear or confusing? Input from others would be helpful. I'm so desperate to know if I can get better.
Thx for patience to reading. - H.

[annekat]

Dear Annekat- it took me some time to reply, as my ENT appt. was truly horrible, placing me into a slump that you would not believe. The Dr. would not share the video of the painful nasalscope that he streamed to his computer - to who? where? what? His staff said they do not provide copies to patients. I am disallowed to see, nor a copy, regardless he claimed (after the fact) that he was just a "Generalist dr." and not really an ENT!? which made NO sense as his billing showed all the ENT procedures he performs. SO, why does he need to keep my expensive streamed video then?... that Im disallowed to give to another ENT?
He also denied me a nasal biopsy as well, to get this simply checked because he claimed Wegeners only have massive GREEN crusting and not bleeding, obstruction blood crusts (that I have). I also have a hole in my septum, but he quickly assumed it to be from prior surgeries regardless he never read any of my prior history or reviewed past CT or MRI imaging (reports).
What is the harm to even do a biopsy? I don't get it. Just why not? I had a basic nasal swab 2 yrs ago that had signs of staphylococcus (STILL no one did anything).
Did you have an actual sinus biopsy cut out, or a nasal swab? Was it painful?

The Dr's behaviors in my care have been demoralizing.... I just do not know what to do anymore, because now the (ignorant) ENT's report went into the computer medical portal system. Therefore my PCP claims, "I cannot refer you to any rheumatologist because the ENT did not dx you". (Regardless i've become deafened with blood occasionally coming from nose, anosmia, elevated wbc, arthritis in joints etc.)
Are they waiting for me to become blind next? My issues are so obvious that needs to be evaluated - This is NOT normal. What MORE is required to be listened to?

SO - back to square one, to not do anything until my symptoms require hospitalization again, I suppose? There were other members here who said to just go make a Rheumatologist appt. yourself through the Vasculitis site. I need to stress, that I TRIED!! but the Schedulers disallowed it, by stating their OWN dx of my issue over the phone!- assuming "Allergies". After asking me for "Name and Date of Birth" to look up my file in the portal computer system, to deny me an appt. with the Rheumatologist! I was stunned from the total inappropriate, unbelievable situation of having unknown receptionists denying me an appt. just by using their own dx/assumption about my issues without knowing me. I have private $$$ health insurance and can't use it. It's bizarre.
Is my explanation on this clear or confusing? Input from others would be helpful. I'm so desperate to know if I can get better.
Thx for patience to reading. - H.

Helen, it just really seems you need to get out of whatever medical system or network you are in and into another one. I can't imagine a worse ENT and you should be able to get a better one just about anywhere, whether listed on the VF site or not. If you live near a university teaching hospital or medical center, they are known for having good doctors who schedule appointments with outpatients and will have plenty of other doctors available in the other specialties that apply to your case, from which a "team" may be formed. I don't do this myself, just know people who do, and have heard the suggestion many times. I don't understand your not being able to use your expensive insurance to have better choices of whom to see. Do you need a new PCP who is more willing to make new referrals? I don't think it is necessary to already be diagnosed in order to see a rheumatologist with WG experience, who knows how to interpret your symptoms, read your blood tests, and can refer you to a good ENT, pulmonologist, or whatever you need. Your ENTs statement about the red or green crusts should be a huge red flag to anyone with WG knowledge. I would not even bother going to this guy again. And the inability to have access to your images is a travesty that I don't understand.

No, a nasal biopsy is not that big of a deal, mine was done right on the spot, unscheduled, in the doctor's chair, after I made my own appointment with the ENT I'd been seeing, prompted by the sudden appearance of my saddle nose, and having just been in the hospital overnight with new lung issues which suggested WG. He and his nurse stayed late to get the procedure done, a local and/or topical anesthetic was used, it was not without pain and there was bleeding, and I think there was a small cut made for a sample as well as scrapings from the hole in the bony part of my collapsed septum. People will say nasal biopsies are unreliable and inconclusive, but it got me a dx, and the discomfort and moderate amount of pain was well worth it. It sure can't hurt to try. I ended up being treated by my pulmonologist/internist, not a WG specialist but knew what the treatments were, and they worked. I never even had a rheumy until recently when my pulmy retired, and I got a new pulmy, too. Still see the old ENT occasionally, mainly for hearing issues and vertigo. So, though it is best to have a knowledgeable rheumy to oversee your care, not everyone does, if they have other good docs who are able to dx and willing to treat. Also, it's not unheard of for a very knowledgeable rheumy to go ahead and treat based on your symptoms and blood work alone. I don't understand docs who are so resistant to helping you get second opinions and a dx and treatment. Good luck. I hope others have some input here.

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[Alysia]

Dear Annekat- it took me some time to reply, as my ENT appt. was truly horrible, placing me into a slump that you would not believe. The Dr. would not share the video of the painful nasalscope that he streamed to his computer - to who? where? what? His staff said they do not provide copies to patients. I am disallowed to see, nor a copy, regardless he claimed (after the fact) that he was just a "Generalist dr." and not really an ENT!? which made NO sense as his billing showed all the ENT procedures he performs. SO, why does he need to keep my expensive streamed video then?... that Im disallowed to give to another ENT?
He also denied me a nasal biopsy as well, to get this simply checked because he claimed Wegeners only have massive GREEN crusting and not bleeding, obstruction blood crusts (that I have). I also have a hole in my septum, but he quickly assumed it to be from prior surgeries regardless he never read any of my prior history or reviewed past CT or MRI imaging (reports).
What is the harm to even do a biopsy? I don't get it. Just why not? I had a basic nasal swab 2 yrs ago that had signs of staphylococcus (STILL no one did anything).
Did you have an actual sinus biopsy cut out, or a nasal swab? Was it painful?

The Dr's behaviors in my care have been demoralizing.... I just do not know what to do anymore, because now the (ignorant) ENT's report went into the computer medical portal system. Therefore my PCP claims, "I cannot refer you to any rheumatologist because the ENT did not dx you". (Regardless i've become deafened with blood occasionally coming from nose, anosmia, elevated wbc, arthritis in joints etc.)
Are they waiting for me to become blind next? My issues are so obvious that needs to be evaluated - This is NOT normal. What MORE is required to be listened to?

SO - back to square one, to not do anything until my symptoms require hospitalization again, I suppose? There were other members here who said to just go make a Rheumatologist appt. yourself through the Vasculitis site. I need to stress, that I TRIED!! but the Schedulers disallowed it, by stating their OWN dx of my issue over the phone!- assuming "Allergies". After asking me for "Name and Date of Birth" to look up my file in the portal computer system, to deny me an appt. with the Rheumatologist! I was stunned from the total inappropriate, unbelievable situation of having unknown receptionists denying me an appt. just by using their own dx/assumption about my issues without knowing me. I have private $$$ health insurance and can't use it. It's bizarre.
Is my explanation on this clear or confusing? Input from others would be helpful. I'm so desperate to know if I can get better.
Thx for patience to reading. - H.

It makes me mad to hear about this kind of docs. Can you write a complaint letter about this ENT to an ombudsman or to someone above him ? It is a shameful total ignorance to say that in wg the nose productions are green and not bloody. The most stupid thing we have heard here from a dr. You can also complain about not giving you a copy of YOUR video. I would think it is illegal.
Hang in there Helen. Dont give up. You have our support. Sending prayers.

[drz]

i agree you need to find a better doctor ASAP. I would also check out if they have any person that handles complaints about poor care or a state regulatory agency that over sees licensure since most professional organizations try to regulate their worst actors.