Chronic sinus infections, bronchitis, and nasal rinses.

[drz]

Chronic sinus infections and bronchitis are very common among us Weggies due to our suppressed immune system, damage to our sinuses from the Wegs and the excess mucous resulting from the damage and our inability of our body to adequately flush our sinuses and nasal passages naturally.

I had several sinus infections before i even got Wegs which my Weg expert said probably contributed to my getting Wegs in the first place but I have had a lot more since my weg diagnosis.

The problem is these sinus infections and bronchitis tend to become chronic as the bacteria may develop a resistance to the antibiotics used. These areas are already often inflamed and damaged by the Wegs and the infections just compound the problems and make them worse. And these infections can also be caused by fungus or a virus and our suppressed immune system and damaged tissue in these areas just increase our risk of developing more such infections. Taking antibiotics for chronic infections becomes problematic if the infections are not caused by a bacteria since they will be ineffective and the antibiotics may well lose their effectives from continual usage. The only way to determine the type of infection is to try culture it which is expensive and also time consuming which may actually delay the needed treatment.

I found out there is no all purpose way to deal with chronic sinus infections apart from general chemicals used to sterilize a hospital roon or OR equipment and these are not suitable for internal use. I found reference to a couple additives for nasal rinses that claimed to be multipurpose but they also seemed very expensive with little evidence to indicate their efficacy.

The most promising info I found was a person who flooded his sinuses periodically with a strong hydrogen peroxide and saline solution and claimed it cured his infections repeatedly. Alkolol was another nasal additive that was widely promoted as a good solvent to help clean nasal passages. Adding some baby shampoo was also mentioned several times. Adding Betadine to a saline solution was also mentioned to kill any infections. The problem for me was that there was little info on how much to use or how effective these additives would be.

I also found some suggestion that too much nasal rinsing could be counter productive and actually increase the risk of certain types of infections by removing too much of the protective layers lining the sinus cavities and nasal passages. My local ENT doctor had once told me you can not over do nasal rinsing but he could be wrong.

I sought some helpful info from my local pharmacist. He told me he was unaware of any commercial product that would do what I wanted, kill off any chronic infections. He also agreed that chronic overuse of antibiotics presented potential problems.

He said Betadine would work but would be messy. He said hydrogen peroxide seemed to be the safest and easiest one to try and cheapest one too. He thought a fairly high percentage of peroxide to saline water would be safe, up to 50% but this might also be quite uncomfortable.

He agreed that Alkolol would help with cleaning the passages and had no opinion about baby shampoo as a solvent. He agreed that inhaling steam for several minutes before a nasal rinse should greatly increase its effectiveness.

So I started experimenting. I would make a regular saline mixture which probably equaled three commercial packets to one 8 oz NeilMed bottle, add a squirt of peroxide, a drop of Johnson Baby shampoo, and rinse away. I usually got lot of blood clots and mucous gunk and some fresh blood on the first rinse and through half of the second bottle of rinse. The third bottle was generally clear so I would then add some Alkolol to end with a clean fresh feeling.

I think the stuff suggesting a sinus infections has decreased some but i was also taking Azithromycin antibiotic at the same time so that might have also caused any improvement. I found I only add a small squirt of peroxide since more than that seems irritating but the solution is probably not strong enough to really do much antiseptic work in a quick rinse. I think flooding the sinuses with a stronger solution would be much more effective but also much more uncomfortable. I think the baby shampoo does help remove gunk and it only takes a drop or two to really suds up. It doesn't seem to irritate either at a low level.

Taking a lot Guaifenesin seems to help thin the mucus and reduce the post nasal drip a bit but one needs to generally take the max suggested every day for this to be very effective. I am not aware of any research suggesting continual use is dangerous and I had ENT doctors prescribe it for me for several years on a daily basis for allergies.

I find drinking a tea with added honey usually help reduces coughing fits for awhile. Of course there are many cough drops on the market too which help as do some hard mint candies.

Inhaling steam for several minutes seem very helpful especially if done between rinses but it can also be another time consuming procedure. I have a small portable machine that uses distilled water and I set it on a small chair in the shower stall with a towel covering my head to help direct the steam into my nose.

I find the chronic coughing from the mucus dripping down my throat very exhausting and annoying. As well as the congestion that comes from sinus infections. I think these two symptoms probably are the most common among anyone with Wegs since most people do end up with Wegs attacking the sinuses.

I would love to hear any techniques people have found to help relieve these annoying symptoms.

[mrtmeo]

Hi drz,
If you are worried about iodine being messy, you can add some ascorbic acid to the iodine water and it will become clear.
Iodine is also, good for healing scar tissue.
http://www.thyroidscience.com/cases/Derry.Iodine.Regen.6.7.08.pdf

The problems with infection are that we kill off all our good bacteria with antibiotics.
There are some that use a probiotic in their nasal rinse to put back some good flora.
Not sure if that is something you would like to try or not, but I have not tried for anything, yet.
Natural and Effective Sinus Infection Remedy | The Healthy Home Economist (http://www.thehealthyhomeeconomist.com/heal-sinus-infections-with-no-antibiotics-really/)

[im so blessed]

Maybe i need to post this elsewhere...but i use to use the nielmed rinse until it went into my inner ear and caused a very painful ear infection. It felt like swimmers ear when it happened..but got very painful so i dont use them anymore.

[lag713]

Drz - I can't provide much advice but I'm glad you shared your considerations and trials with us. I have used the Neilmed rinse a few times but it always feels like I'm drowning. I guess it reminds me of the feeling of being hit by a wave unexpectedly. I'm on nasonex to help with nasal inflammation and it makes a huge difference for me. I'm always nervous about putting anything into my sinuses that may make a greater issue. I know that with anything moderation is key. We should wash our hands but if you wash your hands constantly then they can dry out and crack leaving you more exposed than if you washed less frequently. I think the same rules probably apply to sinus rinses.

As you said, "I also found some suggestion that too much nasal rinsing could be counter productive and actually increase the risk of certain types of infections by removing too much of the protective layers lining the sinus cavities and nasal passages. My local ENT doctor had once told me you can not over do nasal rinsing but he could be wrong."

I've had chronic sinus infections before dx so I don't think it bothers me too much except I also have a deviated septum. The combination of blocked sinus and nasal passages and a deviated septum leads to snoring which is both embarrassing for me and terrible for my partner. I need to keep experimenting to find a better solution!

[drz]

I am too concerned about doing anything that might make things worse or create new problems for me. Therefore I rule out using anything known to have a risk of causing scarring and figure anything that causes a strong burning or stinging sensation might also be damaging the tissue in the sinuses and nasal passages. That eliminates most of the things mentioned as possible antiseptics. There is no way to be sure you have a safe dosage of such stronger ingredients.

I also find running a humidifier in my bedroom at night helps reduce drying and related congestion. I try keep my bedroom temp around 66 degrees which seems comfortable for sleeping. I think if it is too warm it increases drying of nasal passages when I snore at night.

I also decided to only rinse a couple times a day plus whenever I felt I had nasal congestion that was irritating or reducing my breathing since this usually means there is a build up on dried blood clot, which often has mucus plug behind it too. My breathing might still be OK but I usually get some gunk or blood clots coming out whenever i rinse at these times.

I also will use two or three or even four NeilMed bottles at a time till the rinses look clear and the nasal passages feel open. I will use the Fluticasone Nasal spray only after the rinses. I will some times also add the NeilMed NasoGel for Dry noses when they feel dry but open.

I think the inhaling steam can be done anytime but seems most effective between rinses. I usually inhale for about 10-15 minutes.

I find that using frequent nasal rinses seems to relieve or prevent the painful feeling of sinus pressure buildup which has often been rather painful for me in the past. With my present regime I generally feel little pain in my sinuses even when they appear infected.

I still plan to see an ENT doctor soon to see if they see anything else going on that might be causing or contributing to my sinus problems.

I wish there was a good way to prevent the mucus dripping down the throat that causes the frequent coughing spells. They can be exhausting. Plus everyone thinks you are running around spreading cold germs and it is hard to explain that you don't have anything contagious.

[mrtmeo]

Hi drz,
Sometimes, post nasal drip can be due to acid reflux or the pepsin enzyme.
It can also, be caused by inflammation in the lungs and/or sinuses.
Have your lungs been checked lately?

Have tried using juice from lemons in water to drink to help alkalize your system to see if that helps with pnd?

[drz]

I do have GERD and take Protonix twice a day for it. I haven't tried using apple cider vinegar or lemon juice on a regular basis to see if it would help with the GERD. The meds usually seem to control it adequately but I still have some symptoms at times.


Hi drz,
Sometimes, post nasal drip can be due to acid reflux or the pepsin enzyme.
It can also, be caused by inflammation in the lungs and/or sinuses.
Have your lungs been checked lately?

Have tried using juice from lemons in water to drink to help alkalize your system to see if that helps with pnd?

[mrtmeo]

I do have GERD and take Protonix twice a day for it. I haven't tried using apple cider vinegar or lemon juice on a regular basis to see if it would help with the GERD. The meds usually seem to control it adequately but I still have some symptoms at times.

My mom has barrett's esophagus and she rarely gets acid reflux pain. She has the silent reflux which can also, cause pnd.
She still has some pnd sometimes and she is on nexium.

[MikeG-2012]

As many of you know, I (along with our dearly departed Phil) am an advocate of the WaterPik and/or the SinuPulse Elite devices. I've been using one or the other for over 2 years, and they have been the single best thing I did to keep my sinuses healthy.

My ENT agrees that you can not rinse too much. The argument that says it rinses off good mucus, etc. is null and void with Wegeners patients with sinus damage. Our lining has bee compromised by the disease and there is not much normal mucosa left in most of us with sinus issues.

As far as getting on top of the infections. First thing I've noticed that if the disease is semi contained with proper treatment, the staphylococcus aureus bacteria suddenly disappears. There is a plethora of stuff out there about the correlation between weg patients and staphylococcus aureus bacteria. The thing about staphylococcus aureus is that it does mutate. I've had to do a couple different antibiotics to get on top of it. My ENT does a nasal culture every time the infection gets worse, and gets a report from the lab about what works to kill it at that time. This last time, I was allergic to all the pill forms, so he had me dissolving bactroban ointment in saline and using it as a rinse. I've also used Gentamicin solution, commonly referred as "Wilson's Solution".

Rinsing with an antiobiotic: I've found that once again the WaterPik type device rules! I developed my own way to rinse with the antibiotic rinse. I start the stream very slow on the device, plug the exit nostril (the one without the water wand in it), and slowly let the rinse enter the nose and sinuses. I can tell when the rinse is starting to tickle the back of my throat, and then stop the flow of the WaterPik. Then, I hold it in there for a minute, or as long as I can stand it, and then blow it out all at once. The method allows the antibiotic rinse to sit in there for a while and seep into spaces that it might not get to with a fast in and out like with a NeilMed bottle. My ENT noticed significant improvement when I started doing this. At one point during a visit, he pushed his chair back, looked at me and said, "OK, tell me what you are doing again. I want to know how this has progressed like this." I believe that he is recommending to other patients to do this now too.

Since holding in the antibiotic worked so good, I started doing the above as part of my daily routine. I fill my sinuses, let the rinse sit in there for a while, then hard blow it out. I repeat that with an entire basin of water (1 liter). The action of the saline sitting in the nose and sinuses loosens and softens up the hard crusting and allows it to come out with a hard blow out of the saline.

I've tried a couple of the things DrZ mentioned, baby shampoo and Alkalol. I haven't tried the iodine and/or the peroxide. I do like the baby shampoo, especially when there is a flare up going on. It soothes pretty nice. I used a 1% solution, which was 1 teaspoon with 1 liter of water. One thing that DrZ did not mention is that I had one ENT that prescribed steroid vials, used in nebulizers, to mix in with 8 ounces of saline.

As far as the WaterPik vs. NeilMed bottle: I really believe that the WaterPik and and/or any powered pulsating device is better because it emits a constant steady stream of water over a longer period of time. It is also gentle enough not to flood your eustachian tubes and flood the middle ear. I used to do that all the time with the squeeze bottles. I don't have that drowning sensation that comes from the all at once flood from the bottles either. I can say that I do like the SinuPulse Elite the best between it and a WaterPik. Here's the WaterPik device that I use (click here (https://www.waterpik.com/oral-health/products/dental-water-flosser/WP-60/)). Here's a link to the SinuPulse Elite machine (click here (http://www.sinupulse.com/index.php?p=3_1)). Here is the page of nasal wands (http://www.sinupulse.com/index.php?p=3_3) and the model numbers of WaterPik devices they are compatible with are listed in the description. The only advantage of the WaterPik is that it is available locally, and you can get another one right away when one wears out. I've also bought one at a thrift store and sanitized it with bleach, soapy water, etc. before using it. Cost from the thrift store was $3.00!! I now have one at my office by a wash sink in my department!

One more thing before I end this... (-8 Working with my ENT in the office, I've been instructed on how to put a want without the protective tip into my nose. One side, I can insert eh entire 3.5 inches of the wand into my nose and get water directly into the maxillary sinus cavity. Since I have been doing this, the crusting is under control, and the sinus linings (mucosa) has started to recover. My two ethmoid sinuses actually have grown back normal linings. My main sinuses have started to scar over, and get to what my ENT calls a "typical Wegeners nose".

Oh, I lied--I'm not done yet. Another part of Mike's sinus journey is that I installed a three stage antibacterial water filter under my kitchen sink, connected to a drinking water faucet. This is not in and of itself the cool part. What I did next is. I worked with my plumber and installed a hot/cold "mix valve" under the sink that feeds the filter system. So what I do is set the temperature on the mix valve to how hot I want my rinse water to be. Every morning, I put in my 3 liter pitcher my pre-mixed saline and baking soda mixture (found a good use for all those mini containers that come in the multi-packs of storage containers), prime hot water to teh kitchen sink, flip the drinking water faucet on and fill the pitcher with filtered water that is, as Goldylocks once said, "Just Right". Some will say that distilled water is the only kind to use in the sinuses, but my ENT said tap water is fine; so that makes my filtered water even more "fine."

OK, time to get back to work. Lunch is over!

[Thinker]

For those of you that get a flooding feeling when using the Neilmed bottle, try humming while using it to irrigate your sinuses. If I forget, I too get the flooding feeling. I think I watched an instructional video on the NeilMed website or youtube, and they suggested that idea.

[drz]

Mike's post has a lot of good info. I wonder about flooding the sinus cavities by blocking the exit so the saline solution builds up inside. The flooding technique has been used by others and seems likely to improve the cleaning of a rinse but wouldn't it also increase the risk of forcing liquid into the Eustachian tubes and middle ear where it could do a lot of damage. Some people have had this experience from the squeeze bottles as noted in earlier posts.

I did try my Grossan powered rinser today
Amazon.com: Grossan Hydro Pulse Nasal and Sinus Irrigation System with the Original Grossan Sinus Tip: Health & Personal Care (http://www.amazon.com/Grossan-Hydro-Irrigation-System-Original/dp/B000H84D2G/ref=sr_1_1?s=hpc&ie=UTF8&qid=1421982808&sr=1-1&keywords=grossan+hydro+pulse+nasal)
and experimented with settings. Even at the highest setting it is still very slow when compared to a NeilMed squeeze bottle. I did note though that because of it's slower flow that the solution stays in the nasal and sinus areas longer which might help with cleaning things out. It also takes a lot longer to empty the reservoir of solution and the process of holding the nasal irrigator tip against the nostril is a lot more uncomfortable that using a squeeze bottle in a few second intervals. The pulsing action though is suppose to assist with the cleaning of the sinuses and since one filling on the Grossan equals two squeeze bottles of solution, it seemed as effective as two rinses with a squeeze bottle which can be done quicker with more force. But the NeilMed squeeze bottle seems too forceful for some people and they might find the slower and more gentle power machines more comfortable for them to use.

The addition of a steroid additive sounds real promising to help stop the continual bleeding i now have in the sinuses and I will seek out some ENT doctors to inquire about such an additive.

The idea of getting each infection cultured is also great idea but I found I only was able to get that done routinely when an inpatient. Maybe if I find a good ENT doctor I might be able to get this done when needed.

I also like the idea of making an antibiotic solution by dissolving Bactroban in saline. I never considered such a possibility but have read about people dissolving antibiotic pills in their rinse solutions.

I wonder about post nasal drip being caused by GERD. I have had it for years, probably long before my GERD was diagnosed. Has anyone found taking some additive like lemon juice or apple cider vinegar to help reduce post nasal drip or even the GERD. I guess these additives would be safe to try and rather easy to do so might be worth a trial.

[mrtmeo]

Hi drz,
As far as GERD, they have found it is the pepsin enzyme that lives in the upper throat and upper respiratory tract that attacks tissues and lowering their ph stops there attack. There was a study showing alkaline water at a ph of 8.8 irreversibly stopped the pepsin enzyme.
However, I tried a nasal rinse with alkaline water on my mom and it didn't stop her cough. I didn't do it daily for a week to see if it would help. I should try it for longer to see if her nasal issues stop.

Potential benefits of pH 8.8 alkaline drinking water as an adjunct ... - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/22844861)

Lemon juice and ACV can alkalize the throat and digestive tract.

[annekat]

Maybe i need to post this elsewhere...but i use to use the nielmed rinse until it went into my inner ear and caused a very painful ear infection. It felt like swimmers ear when it happened..but got very painful so i dont use them anymore. You do need to be careful of that.... use a gentler squeeze. One way to get a gentler flow is to loosen the cap of the NeilMed bottle a bit. i wouldn't give up on sinus rinsing. Maybe find another device that allows you to control the strength of the flow. I don't know if the Water Pik is adjustable in that way. I do know there is a nasal attachment you can get for it. And I've seen some pulsating rinse systems online or in stores, as long as you could control the pulse. I've gotten water in my ear a few times without it causing an infection. But I'm sorry that happened to you, and maybe you have eustachian tubes that are too open, instead of the more common case with WG of them being too closed, which can also cause ear infections.

[annekat]

Drz, that's a good summary of ways people deal with this. I'll just echo a couple of them that have worked for me. Inhaling steam is great before a sinus rinse to loosen things up, and I think works better than a hot shower, which also helps. I use peppermint in a bowl of steaming water and it is pleasant. It is time consuming and I rarely do it now that my nasal problems are a lot better. Also, I've used the baby shampoo and the Alkalol successfully. At this point, with less severe problems, I'd go for the Alkalol, since it has a pleasant and soothing effect. I agree with the need to be careful and not use too strong a solution... I would not follow the instructions on the bottle that imply you can use it full strength. In the NeilMed bottle, I only use a little splash of it, maybe a half a teaspoon, maybe more; experimenting is important. Also, I agree that if you are doing a few rinses in one sitting, save the Alkalol for last, for the nice, refreshing feeling!

[drz]

There was discussion on these issues on other threads too and I will try copy some of the better ones to add here when I find them.

I saw an ENT doctor who knew something about GPA. I was her second such patient that day. Most of the ones I have seen have never seen a GPA case before.

She did a culture on my nasal area and said it was OK but also prescribe some Mupirocin (Bactroban ) solution for a rinse daily for a month and then return. The Mupirocin solution has to be made special at their pharmacy and I have not received it yet. They take the ointment and shake it up till it is a liquid that will get into the sinuses where it can do some good. I used Mupirocin for my infection around my BAHA site last year. I think it is treatment of first choice for staph or MRSA infections but it requires some work to get it as only a few pharmacies have the equipment to make the solution.

She said my homemade solution of saline water, baking soda, baby shampoo and peroxide was OK as long as the peroxide concentration was very low since if it was too strong it might do some damage to the skin and then cause more bleeding. Generally she supported my idea that anything that stings or burns during the rinses might be doing more harm than good. One exception would be plain tap water that is not buffered with salt or baking soda.

I still have some bleeding and blood clots at times from my rinses but generally after using the Grossan Hydro Pulse frequently I notice my nose works more like it is supposed to work with mucous naturally working its way out my nose so I often have to blow my nose again which I had not done for years.

The sinus infections and bronchitis seem either gone or much improved. Coughing is no longer a problem right now and fatigue is also reduced.. My labs also suggest the infections are either gone or not very prominent now. My Sed rate is still very high but the CRP is back to normal range so hope the SED will follow soon as I am having labs now every two weeks till I am deemed back in a good drug induced remission. My joints still have more pain than I would like but it is much less now than a month or two ago.

[drz]

Other links to info on these issues:

Nose pain (http://www.wegeners-granulomatosis.com/forum/general-wg-chat/4641-nose-pain.html)
Could MRSA be responsible for AAV? (http://www.wegeners-granulomatosis.com/forum/general-wg-chat/4328-could-mrsa-responsible-aav.html)
Thinking about Rituxan (http://www.wegeners-granulomatosis.com/forum/medication/4113-thinking-about-rituxan-2.html)

[mrtmeo]

it sounds like some good news drz!
Praying the sed rate comes down and u r back in remission soon!

[me2]

Well, since the MRSA- AAV thread was closed for some reason I will continue here with where I left off in that discussion. I would prefer to continue the discussion in the original thread but I can't.
I apologize to others here if this thread is closed for the same reason- whatever that is.
All I have seen is people trying to help themselves, people they care about and each other.

When I was last talking to Blake we were talking about the use of iodine and Ponaris - which contains iodine.
I had an appointment with my ENT the next day and while I was waiting in "the chair" to get scoped I saw a notice on his office wall about a study they were doing comparing just plain saline rinse, with saline and iodine solution and with saline and mupiricin solution. I didn't even have to approach him from the angle of the discussion we were having here on the forum I just asked about the study.

They are studying the compared effectiveness of these different solutions in the control of staph in the sinuses. The concentration of the iodine solution is close to the same as the one Blake outlined. The form of iodine they are using is Povidone. Betadine is equal to 10% povidone-iodine. The direction is to put 2.5 ml in a Neil med bottle that is 240ml.
This makes an approximate 1% iodine solution.

The saline for all the options is to be made with previously boiled or distilled water. (I currently just use well water. So this would be different for me) . The rinse for all the options is to be done twice daily. The doc said I could do more if I wanted to and also suggested that if I did more that I could do the medicated rinse as the last rinse.

My sinus was cultured as part of my visit and if I am found to have staph still in my sinus then I will participate in this study. I will report my experience and the results of their study here.

I think it carries some real significance because of the unique problem that staph presents for us weggies. The doctor agreed.

Part of the protocol for all of the options is to shower every other day with the same soap they use before surgeries. Chlorhexidine gluconate 4% . The thinking is that because staph is present on the exterior of our bodies we might significantly reduce colonizing our sinuses by extra exterior hygiene.

How interesting that my docs were concurrently working on the same idea Blake and I were exploring right here. Think about the consequences of the pursuit of knowledge and sharing of information being censored and discouraged here on this forum.

Of course I'm hoping I don't have staph right now but if I do - I'm part of the study and will learn more than by not trying anything.

I had a long chat with the doctor doing the study and she was very interested the discussion we had been having here.
Good doctors LOVE informed and interested patients who are making efforts on their own behalf. Bad doctors want to treat you like an animal that should never have a thought or opinion.

Insist on having a good doctor. Don't settle for a doctor that should have become a veterinarian. Good doctors enjoy and embrace the fact that they have fellow humans for patients. They do not look down on them as if they are somehow superior.

I feel very blessed that I have such great doctors right now supporting me on this journey. It has not always been this way. I have suffered suppression and neglect under the 'care' of arrogant vet-shoulda-beens. This is a wildly out-dated model of the doctor/patient relationship.

[me2]

Hi drz,
As far as GERD, they have found it is the pepsin enzyme that lives in the upper throat and upper respiratory tract that attacks tissues and lowering their ph stops there attack. There was a study showing alkaline water at a ph of 8.8 irreversibly stopped the pepsin enzyme.
However, I tried a nasal rinse with alkaline water on my mom and it didn't stop her cough. I didn't do it daily for a week to see if it would help. I should try it for longer to see if her nasal issues stop.

Potential benefits of pH 8.8 alkaline drinking water as an adjunct ... - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/22844861)

Lemon juice and ACV can alkalize the throat and digestive tract.

This is very interesting. Thanks for sharing this. I have been on protonix for a LONG time due to GERD issues. I am currently working with my gastro doc to reduce my protonix dose. One large factor that the doc pointed out to me was that caffeine relaxes the muscles in the throat and contributes to GERD. So, for now I am stopping.

Also, I have read that benzodiazapines can do the same thing. I think your mom used these too Blake? Unfortunately I have only been able to cut back on my use at this time. I use them for neurological damage caused by wg. I have hope that in time I can completely stop the benzo and hopefully lead to stopping protonix. Baby steps. LOL

[MikeG-2012]

Good doctors LOVE informed and interested patients who are making efforts on their own behalf. Bad doctors want to treat you like an animal that should never have a thought or opinion.

Insist on having a good doctor. Don't settle for a doctor that should have become a veterinarian. Good doctors enjoy and embrace the fact that they have fellow humans for patients. They do not look down on them as if they are somehow superior.

I feel very blessed that I have such great doctors right now supporting me on this journey. It has not always been this way. I have suffered suppression and neglect under the 'care' of arrogant vet-shoulda-beens. This is a wildly out-dated model of the doctor/patient relationship.

What more can I say to this other than a hearty "AMEN SISTER!!" Well said. Well said!!

[annekat]

What more can I say to this other than a hearty "AMEN SISTER!!" Well said. Well said!! Only thing I would change here, is that it should be "AMEN BROTHER"! since me2 is Kirk, my relative neighbor geographically, as Weggies go, and one of the three Weggies I have met in person.

I would also suggest that the type of arrogant doctor Kirk describes should probably not have been vets, either. Although arrogance in docs does appear to surface more when dealing with humans than when dealing with animals, who cannot attempt to offer ideas or explanations of their symptoms or how they are feeling. I suppose some vets could be that way with the human owners of these animals.

[mrtmeo]

Well, since the MRSA- AAV thread was closed for some reason I will continue here with where I left off in that discussion. I would prefer to continue the discussion in the original thread but I can't.
I apologize to others here if this thread is closed for the same reason- whatever that is.
All I have seen is people trying to help themselves, people they care about and each other.

When I was last talking to Blake we were talking about the use of iodine and Ponaris - which contains iodine.
I had an appointment with my ENT the next day and while I was waiting in "the chair" to get scoped I saw a notice on his office wall about a study they were doing comparing just plain saline rinse, with saline and iodine solution and with saline and mupiricin solution. I didn't even have to approach him from the angle of the discussion we were having here on the forum I just asked about the study.

They are studying the compared effectiveness of these different solutions in the control of staph in the sinuses. The concentration of the iodine solution is close to the same as the one Blake outlined. The form of iodine they are using is Povidone. Betadine is equal to 10% povidone-iodine. The direction is to put 2.5 ml in a Neil med bottle that is 240ml.
This makes an approximate 1% iodine solution.

The saline for all the options is to be made with previously boiled or distilled water. (I currently just use well water. So this would be different for me) . The rinse for all the options is to be done twice daily. The doc said I could do more if I wanted to and also suggested that if I did more that I could do the medicated rinse as the last rinse.

My sinus was cultured as part of my visit and if I am found to have staph still in my sinus then I will participate in this study. I will report my experience and the results of their study here.

I think it carries some real significance because of the unique problem that staph presents for us weggies. The doctor agreed.

Part of the protocol for all of the options is to shower every other day with the same soap they use before surgeries. Chlorhexidine gluconate 4% . The thinking is that because staph is present on the exterior of our bodies we might significantly reduce colonizing our sinuses by extra exterior hygiene.

How interesting that my docs were concurrently working on the same idea Blake and I were exploring right here. Think about the consequences of the pursuit of knowledge and sharing of information being censored and discouraged here on this forum.

Of course I'm hoping I don't have staph right now but if I do - I'm part of the study and will learn more than by not trying anything.

I had a long chat with the doctor doing the study and she was very interested the discussion we had been having here.
Good doctors LOVE informed and interested patients who are making efforts on their own behalf. Bad doctors want to treat you like an animal that should never have a thought or opinion.

Insist on having a good doctor. Don't settle for a doctor that should have become a veterinarian. Good doctors enjoy and embrace the fact that they have fellow humans for patients. They do not look down on them as if they are somehow superior.

I feel very blessed that I have such great doctors right now supporting me on this journey. It has not always been this way. I have suffered suppression and neglect under the 'care' of arrogant vet-shoulda-beens. This is a wildly out-dated model of the doctor/patient relationship.

Thank you me2.
I thought I would post the original study that convinced me to try iodine on my mom's mrsa.

AbstractVarious commonly used antiseptics were tested against three strains of methicillin-resistant Staphylococcus aureus (MRSA) at stock strength and in serial 10-fold dilutions. The stock solutions of 4% chlorhexidine gluconate-alcohol (Hibiclens), 1% p-chloro-m-xylenol (Acute-Kare), and 3% hexachlorophene (Phisohex) produced 2-log reductions of MRSA after a 15-s exposure, but even after 240 s, these solutions failed to kill all the MRSA. Povidone-iodine (Betadine) solution was maximally effective at the 1:100 dilution, killing all the MRSA within 15 s; other dilutions were less effective, though each killed the MRSA within 120 s. Similar results were obtained with three different strains of methicillin-susceptible S. aureus. Thus, of the four most commonly used antiseptics, povidone-iodine, when diluted 1:100, was the most rapidly bactericidal against both MRSA and methicillin-susceptible S. aureus.



Bactericidal activity of antiseptics against methicillin-resistant Staphylococcus aureus. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC271835/)

[mrtmeo]

This is very interesting. Thanks for sharing this. I have been on protonix for a LONG time due to GERD issues. I am currently working with my gastro doc to reduce my protonix dose. One large factor that the doc pointed out to me was that caffeine relaxes the muscles in the throat and contributes to GERD. So, for now I am stopping.

Also, I have read that benzodiazapines can do the same thing. I think your mom used these too Blake? Unfortunately I have only been able to cut back on my use at this time. I use them for neurological damage caused by wg. I have hope that in time I can completely stop the benzo and hopefully lead to stopping protonix. Baby steps. LOL

Hi me2,
Tapering ppi's may be very difficult due to the rebound reflux caused by them.
I will ask her dr when she is off pred if he has tapering schedule to get her off them if her GI scope comes out okay.

Yes, my mom is still tapering valium. She had to cross over to valium from Ativan because Ativan is way too short acting.
She has been tapering for 20 months and hopefully, be off by July of this year.
Dr Heather Ashton is the world's foremost authority on benzo withdrawal and compiled a manual here
benzo.org.uk : Benzodiazepines: How They Work & How to Withdraw, Prof C H Ashton DM, FRCP, 2002 (http://www.benzo.org.uk/manual/)

[vdub]

I apologize to others here if this thread is closed for the same reason- whatever that is.
The MRSA thread was closed because there was too much "doctoring" going on and suggestions or recommendations of treatments that could be harmful if attempted without consultation with a medical professional. You simply can not tell people that they should be putting iodine, boron, silver, plain tap water, peroxide, or whatever into their sinuses. Some people could be desperate enough or dumb enough to actually attempt the procedure without consulting their doctor first and could cause permanent damage, aka, the young lady who got the nasal rinse into her inner ear and caused an infection. Don't we have enough difficulties with this disease without trying home remedies or "stuff we read on the internet"? The internet is a good resource, but some people tend to get carried away and then it becomes damaging and harmful. Forum members need to temper what suggestions are made and how strongly they recommend a treatment unless you are a doctor and have a medical degree.

[im so blessed]

Hey guys :) I am "the young lady" referred to in vdubs post. Altho i was prescribed the neil med rinse by my ENT, i do agree we have to be careful. It didnt do me much good. But i know some of you get relief from it. We definitely have to keep our heads together and make good decisions when it comes to this disease. I am so happy to be able to bounce things here. Peace everyone :)

[drz]

Thank you me2.
I thought I would post the original study that convinced me to try iodine on my mom's mrsa.

Abstract

Various commonly used antiseptics were tested against three strains of methicillin-resistant Staphylococcus aureus (MRSA) at stock strength and in serial 10-fold dilutions. The stock solutions of 4% chlorhexidine gluconate-alcohol (Hibiclens), 1% p-chloro-m-xylenol (Acute-Kare), and 3% hexachlorophene (Phisohex) produced 2-log reductions of MRSA after a 15-s exposure, but even after 240 s, these solutions failed to kill all the MRSA. Povidone-iodine (Betadine) solution was maximally effective at the 1:100 dilution, killing all the MRSA within 15 s; other dilutions were less effective, though each killed the MRSA within 120 s. Similar results were obtained with three different strains of methicillin-susceptible S. aureus. Thus, of the four most commonly used antiseptics, povidone-iodine, when diluted 1:100, was the most rapidly bactericidal against both MRSA and methicillin-susceptible S. aureus.



Bactericidal activity of antiseptics against methicillin-resistant Staphylococcus aureus. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC271835/)

As long as the solution kills the bad bacteria does it matter if it takes two minutes or 1/4 of a minute. I think studies will be most helpful if helps identify what treatment is most effective in preventing future infections or re-infections. These bacteria constantly evolve to become resistant to antibiotic treatment and what happens if they become resistant to the above chemicals too. That will be a real nightmare! we are at high risk as this article states.

Should I Talk to My Doctor about MRSA Symptoms? (http://socialchoice.com/g/MRSA/?trk=mrsa+fact+sheet%3As&lpid=115763&network=s&gclid=CJaPtcjS_sMCFeJj7AodpyYAZQ)

MRSA skin rashes are spread through the resistant bacteria entering the body. While the bacteria known as staph is common and generally not harmful when on the surface of the skin, it can cause infection when it gets into the bloodstream through a cut in the skin. This form of bacteria has evolved as humans have overused antibiotics to treat colds, flu and viruses. Even when antibiotics are appropriately used to treat bacterial infections, they cause bacteria to adjust, making them more resistant. MRSA constantly changes, making it difficult for researchers to keep developing antibiotics that will effectively fight it.


MRSA symptoms include areas of the skin that are painful to the touch, red, and swollen. MRSA skin infections can also look like spider bites or pimples and are filled with pus. If left untreated, infection can spread to the blood. As the infected blood travels through the human body, infection of the bones, joints, heart valves, lungs, and blood can occur, eventually leading to organ failure. Additional MRSA symptoms can include chills, a persistent cough, and a fever. Patients with compromised immune systems are at a particular risk for developing a MRSA infection, along with individuals who live and work in care centers, such as day care centers, jails, and retirement homes.

[andrew]

The MRSA thread was closed because there was too much "doctoring" going on and suggestions or recommendations of treatments that could be harmful if attempted without consultation with a medical professional. You simply can not tell people that they should be putting iodine, boron, silver, plain tap water, peroxide, or whatever into their sinuses. Some people could be desperate enough or dumb enough to actually attempt the procedure without consulting their doctor first and could cause permanent damage, aka, the young lady who got the nasal rinse into her inner ear and caused an infection. Don't we have enough difficulties with this disease without trying home remedies or "stuff we read on the internet"? The internet is a good resource, but some people tend to get carried away and then it becomes damaging and harmful. Forum members need to temper what suggestions are made and how strongly they recommend a treatment unless you are a doctor and have a medical degree.

Yep I would have to agree. There will be closer monitoring and moderating of people and threads for the foreseeable future.

[annekat]

Hey guys :) I am "the young lady" referred to in vdubs post. Altho i was prescribed the neil med rinse by my ENT, i do agree we have to be careful. It didnt do me much good. But i know some of you get relief from it. We definitely have to keep our heads together and make good decisions when it comes to this disease. I am so happy to be able to bounce things here. Peace everyone :) I don't think by using the NeilMed rinse, as recommended by pretty much all our doctors if we have sinus involvement, that you are in the same category with those who will put anything up their nose without consulting a doctor first. That you happened to get some in your ear, and it caused an infection, is an unusual occurrence. You were following a doctor's orders when this happened, as you said.

[mrtmeo]

As long as the solution kills the bad bacteria does it matter if it takes two minutes or 1/4 of a minute. I think studies will be most helpful if helps identify what treatment is most effective in preventing future infections or re-infections. These bacteria constantly evolve to become resistant to antibiotic treatment and what happens if they become resistant to the above chemicals too. That will be a real nightmare! we are at high risk as this article states..

This is why iodine has been brought back as a treatment method against antibiotic resistant pathogens.
Pathogens have not, to date, become resistant to the pathogens it kills.
Iodine is not genetically engineered.

[me2]

I got a call from my doc. I have staph and have been admitted into the study. I will be one of the people using the special soap in the shower and saline only rinse. I wish I had been in the iodine group but hey- this is science. You gotta be willing to make sacrifices.

[drz]

I don't think by using the NeilMed rinse, as recommended by pretty much all our doctors if we have sinus involvement, that you are in the same category with those who will put anything up their nose without consulting a doctor first. That you happened to get some in your ear, and it caused an infection, is an unusual occurrence. You were following a doctor's orders when this happened, as you said.

One of the advertising points for Grossan Hyro Pulse is that it can be regulated easier than the squeeze bottles and is a lot more gentle even at the highest settings than the squeeze bottles so it might be less likely to cause the problem of getting water into the Eustachian tubes. The directions on the squeeze bottle also advise not rinsing when nostrils are plugged since this is more likely to force water into the tubes. I have learned though how to barely squeeze the NeilMed bottles to get a very gentle force when my nasal passages feel plugged or partly plugged. It seems easier then to clear them by blowing after I get some water up the nose.

[drz]

This is why iodine has been brought back as a treatment method against antibiotic resistant pathogens.
Pathogens have not, to date, become resistant to the pathogens it kills.
Iodine is not genetically engineered.

Let us hope it never happens though since Betadine and iodine are usually used for surgical procedures to try avoid infections. But pathogenic bacteria seems at the top of evolutionary scale for any living organism and can evolve a new strain in a matter of a few hours. The fact they are so wide spread is proof of their amazing ability to evolve and adapt to apparently almost any environment.

[mrtmeo]

Let us hope it never happens though since Betadine and iodine are usually used for surgical procedures to try avoid infections. But pathogenic bacteria seems at the top of evolutionary scale for any living organism and can evolve a new strain in a matter of a few hours. The fact they are so wide spread is proof of their amazing ability to evolve and adapt to apparently almost any environment.

There is a reason for all of this antibiotic resistance.
One theory is that the genetically engineering process in foods shoots a GMO (Genetically Engineered Organism), a gmo bacteria which is resistant to a large quantity of deadly antibiotics, a viral promoter that doesn't shut off and a foreign gene which expresses the trait they want in the seeds of a totally different species.

After shooting this stuff into the seed cells of the plant, they throw deadly antibiotics at the seeds.
The seeds that die, didn't take the process and the ones that live did.

These gmo's are resistant to many deadly antibiotics and we eat this in foods because there is no labeling.
The animals we eat are fed gmo's except for organic.
Organic foods cannot contain gmo's.
Animals we eat are also, injected with gmo antibiotics.

Put this all in our body's and we can make pathogens resistant to what ever antiobiotics were used in the gmo process.
If you want an explaination on the gmo process, you watch the video here
https://vimeo.com/6575475

[mrtmeo]

One of the advertising points for Grossan Hyro Pulse is that it can be regulated easier than the squeeze bottles and is a lot more gentle even at the highest settings than the squeeze bottles so it might be less likely to cause the problem of getting water into the Eustachian tubes. The directions on the squeeze bottle also advise not rinsing when nostrils are plugged since this is more likely to force water into the tubes. I have learned though how to barely squeeze the NeilMed bottles to get a very gentle force when my nasal passages feel plugged or partly plugged. It seems easier then to clear them by blowing after I get some water up the nose.

There is a new product with a study proving its efficacy that might be available from the dr and covered by insurance that can get the water out of the inner tube and open up Eustachian tube dysfunction.
It's called the Ear Popper.
https://www.youtube.com/watch?v=kZrl5cuarJQ

Ear-Clearing Device May Replace Surgery and Drugs in Draining Middle-Ear Fluid [NIDCD Inside] (http://www.nidcd.nih.gov/health/inside/sum06/pages/pg5.aspx)

Here is a device called the otovent which is under $20.
https://www.youtube.com/watch?v=oi6DdairDIo

[isi14]

Hi
I have some disturbs this days,and i think that i have problems of sinuses.i have read on internet but i didnt found nothing helpful.Can someone told me which are the signs of this problem?
Thank you[emoji4]


Inviato dal mio iPhone utilizzando Tapatalk

[jakekell]

I went to a new ENT and he told me to get Ponaris Nasal Emollient (http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=3&cad=rja&uact=8&ved=0CDsQFjAC&url=http%3A%2F%2Fwww.ponaris.net%2F&ei=mtjzVPXHHoflsASU3IDABQ&usg=AFQjCNFBjeGZZDKRsWX8UC2ktRrVouooNQ&sig2=p0_yWuS6zMfPrq7INj4NbQ&bvm=bv.87269000,d.cWc) I put a couple of drops in each side of my nose at night. I put some in the morning if needed and I have never had anything help me through this mess like this. I was doing every thing you mentioned drz and it is exhausting was so sick of it! I can't tell you how much better my sinus is. I am always worried about reacting to new things so tried it a little at a time, no problem. I would ask your ENT if you should use it, read a lot of good reviews on the product. I ordered mine on Amazon as I use prime

Jakekell-Mary

[annekat]

Hi
I have some disturbs this days,and i think that i have problems of sinuses.i have read on internet but i didnt found nothing helpful.Can someone told me which are the signs of this problem?
Thank you[emoji4]


Inviato dal mio iPhone utilizzando Tapatalk Isi, it's a little hard to distinguish the sinus problems of Wegs from the general problems that a lot of the population has in that area from allergies, deviated septums, etc. With Wegs, there is extra inflammation and granulomas, which further impede and obstruct the natural flow of mucus. More will get trapped in the sinuses, where it can cause blockages and infections. The granulomas are masses of affected blood cells which can no longer pass enough oxygen to the different areas, so tissue death and erosion of sinus bones and the nasal septum can occur. Symptoms are typically a lot of crusting and greenish mucus or large clumps of mucus that eventually work their way out, and they may be tinged with blood. People may have headaches or facial pain from all the congestion, or a very full feeling in the ears, with possible pain, ear infections, and hearing loss, from the eustachian tubes becoming inflamed and no longer allowing efficient drainage of fluid from the ears. It is all related to sinus involvement with Wegs, though people's symptoms may vary. Using some form of nasal irrigation such as the NeilMed squeeze bottle system will help a lot, as well as taking hot showers and inhaling steam from a bowl of water. There is probably a lot in the archives on sinus symptoms with Wegs, which you can find by using the search box above.

BTW, anyone can correct me in my description of granulomas and the affected blood cells, or anything else, as some of it is still pretty mysterious to me.

[drz]

We Weggies some times become reluctant to post good news some times cause it seems to often result in the Weg dog waking up and attacking with a vengeance to let us know it is still around. But maybe I can sneak this one by.

Early this year I had flu which I thought was bronchitis since I was coughing to point of being very exhausted. I also had sinus infections as evidenced by gunk in sinus rinses. My inflammation markers increased to abnormal and I had lots of blood clots and fresh blood in my sinus rinses. I got antibiotics twice and Tamiflu for the flu symptoms. The meds seemed to help some but I was rinsing several times a day to try keep nasal passages open enough to breathe OK and often added baby shampoo and dash of peroxide into the rinses along with using two or three times normal saline packets. I used the squeeze bottle at first but then later started using my Grossan HydroPulse more. I finally saw an ENT who prescribed some Bactroban (Mupirocin) antibiotic solution to use as a rinse too but they took so long to mail it to me than my sinuses and nasal rinse seemed cleared up by time it arrived so it was never used.

I think it was the frequent rinses and the reduction in my inflammation markers back to normal range that accounted for return to clear nasal rinses. I am back to rinsing only a couple times a day most days and have no blood or trophy buggers in my rinses lately.The nasal passages seem open and breathing is easy again.

I did use some extra Fluticasone nasal spray at times but other wise no changes were made to my maintenance meds of 5 mg pred and 175 mg of azathioprine. When my inflammation markers were elevated it felt like a flare to me since joint pain and fatigue also increased. I made arangements to see my Weg expert at Mayo because of concern of maybe having a the start of a serious flare but by the time I saw him things seemed back in a drug induced remission except my ANCA scores had increased from negative to borderline range. The hope is they will return to negative range and these will be checked at my quarterly reviews with my treating doctor or sooner if Weg symptoms increase again. The hope is to remain in a drug induced remission again for a long time but the Weg symptoms have increased each winter along with infections that seem to come some time between Thanksgiving and Valentine Day.

[me2]

That sounds great drz. What a story. It really illustrates the delicate balance that we live with and the shifting sands of our understanding.
I talked on the phone for quite a while to the doc that is doing the sinus study I am in. I actually wanted out of the study because I was basically stuck in the control group. Like I told the doc , that may not seem like a big deal that somebody has sinus trouble but for a wg patient it could be what triggers my next flare. Its not just sinus trouble to me.

The doc then made a compelling point that we really don't know the effect of these simple treatments vs the fancier ones (like the Mupirocin) .

I agreed that I would stay in the control group but I would bail on the very day that I thought something else might be more appropriate. I'm not staying sick so they can study it. I've been the guinea pig my fair share of times.
In one case I spent 17 thousand dollars of my own money on a treatment that was later proven to be totally ineffective for wg.

So, I'm glad you are on the upswing drz, so am I. In fact , it looks as though I will make it through their study without changing any of my treatment. I go for my final evaluation visit next week . The study will be over and we shall see what they find out in their comparison of different sinus treatments. They are comparing plain saline rinse (which is what I am doing and for the purposes of a wg patient this is the control group) , mupirocin, and finally iodine like Blake was talking about. I asked about peroxide. She said they might consider that in a future study.

I asked about baby shampoo. She said only if you have a baby. Ok, she didn't say that and I didn't ask- I still think its funny. Happy Easter everyone

[drz]

I am now just using the regular strength saline solution with rinses two times a day. It is actually the best my sinuses have been in five years.

[annekat]

Drz and Kirk, I'm glad you are BOTH on the upswing. Drz, I also have an increase in WG symptoms in between Thanksgiving and Valentine's day. I think the colder weather and the stress factor are both involved. Even though it's not nearly as cold here as there. I've had mild to moderate flares which were helped by increasing meds but took some time. This year was a little better and I'm not calling it a flare, as my inflammation levels are pretty normal, but I've taken a little extra pred anyway, just in case. I got a few flu-like or cold-like symptoms; I don't know if anyone gets mild cases of the flu. Whatever it was, it took some time to go away. Otherwise, I've avoided any infections of any seriousness, nothing like your bronchitis. I used to have a lot of bronchitis as a kid. Kirk, that's an interesting study you are in and I'll be interested to hear the results for the things you aren't using, like iodine and mupirocin. It's great you are getting better with just your regular routine.

[jakekell]

Anne,

I think your so right about the cold. When we retired I found myself not going out as it was so cold my sinus couldn't stand it never felt good. We bought a place in Naples and spend from Dec to mid-May here now. We went back to early last year and my sinus didn't like it at all.

Mary

[Il_Randyb]

First I am not on this board much lately and I have not read all of this thread so if this has been stated already then I apologize. My wegs is in remission, it started somewhere I think around 4 or 5 years ago with what I thought at the time was adult on-set of allergies. A little over two years ago it took a quick turn to my kidneys and reduced them to 15%. I am on a kidney transplant list now and doing peritineal dialysis and getting along very well. I still get sinus problems and from what I have been able to figure out they are all infection related. What I found is that a good dose of Bactrim for 7 to 10 days takes care of it. WIthout that I am left with a constant infection. When I was on a constant low dosage of bactrim (also immune suppressants) I never had a sinus infection. I recently had a sinus infection that lasted six weeks and finally went away once I was started on bactrim.

Now as a general rule I do nasal flushes as needed. I tried netti-pot, I tried the squeeze bottle but I did not like either of them. What I settled on and what I really like is the saline solution nasal spray in a can. It is gentle and easy to use. It is a lot less messy then I found the other rinses to be and if done correctly very effective. I use it to loosen things up and then I gently blow out the "stuff". It takes several sprays and blows to get it all out and over time I have learned an effective strategy and I have also learned when it is all out and when there is still some in there. It is most effective if I use it at the end of a long hot shower since that process loosens things up from the steam.

One strategy I will mention is to spray and hold it for a while, pulling into the sinuses. Blow lightly but then wait - go lay down or do something else. Over a little time that wetness will work in favor for you and suddenly things will want to come out.

Anyway I don't think my nasal problems are still wegs problems directly but I do think wegs had a big influence on them. I thing wegs potentially was influenced by my sinus issues and I have heard one theory for wegs is a result of an over active immune system in response to allergies. who knows, all I know is if I effectively manage my sinus infections life is a lot better for me!

[vdub]

Good post, Randy! Good info... Thanks!

[annekat]

Anyway I don't think my nasal problems are still wegs problems directly but I do think wegs had a big influence on them. I thing wegs potentially was influenced by my sinus issues and I have heard one theory for wegs is a result of an over active immune system in response to allergies. who knows, all I know is if I effectively manage my sinus infections life is a lot better for me! I enjoyed your post and am interested in this theory of allergies, which are of course an immune system malfunction or over-reaction, being part of the puzzle of who gets Wegs, for some people, anyway.... It makes sense to me. I was the one in my family with the most allergy problems and I'm the one who ended up getting Wegs!

[jakekell]

I enjoyed your post and am interested in this theory of allergies, which are of course an immune system malfunction or over-reaction, being part of the puzzle of who gets Wegs, for some people, anyway.... It makes sense to me. I was the one in my family with the most allergy problems and I'm the one who ended up getting Wegs!


I have also heard that and as with you I was the one in the family with the allergy issues.

[Il_Randyb]

I cannot remember where I had heard about the possible link to allergies but I do read frequently that wegs is thought to be triggered by an "initial inflammation causing event" which of sounds like it could be allergies or an infection.

[annekat]

I cannot remember where I had heard about the possible link to allergies but I do read frequently that wegs is thought to be triggered by an "initial inflammation causing event" which of sounds like it could be allergies or an infection. Sounds reasonable to me, and sort of obvious, in a way. If they could control allergies better early on, with shots or whatever, maybe it could help prevent some people from getting Wegs. I did not get good treatment for allergies as a child and didn't get the shots until I was an adult and already had Wegs, though no one knew it.

[drz]

One thing I have noticed when doing nasal rinses with my Grossan Hydro Pulse is that if I move my head around, tilting it up and down and sideways, i can feel the different sinus cavities filling with water so i make sure all six get filled and rinsed. I can't do that with my squeeze bottle. I used the Hydro Pulse most mornings and the squeeze bottle in evening or during the day if i need a quick rinse. It took a lot of rinses for a few months but they now seem generally clean and the rinses are pretty clear lately. Some mild crusting in morning but very little blood or trophy boogers or congestion. There is still excess mucus running down the back of my throat at times which causes some symptoms like coughing or sore throat but it is much less than five months ago.

[MikeG-2012]

One thing I have noticed when doing nasal rinses with my Grossan Hydro Pulse is that if I move my head around, tilting it up and down and sideways, i can feel the different sinus cavities filling with water so i make sure all six get filled and rinsed.

I do the same, but put my rinser (Waterpik) on a lower setting, close off one nostril and gently fill the sinuses. I then blow hard or gently, depending on how I'm doing at he moment.
I started doing this with an antibiotic rinse, and let the rinse sit in there a while before letting it out. I can feel when the water starts to tickle the back of my throat now, and it's really nothing to do now that I've done it a LOT.

[drz]

My Grossan Hydro Pulse machine died this summer so I went back to the squeeze bottle till I got a new Sinus Pulse machine which is similar in function. One difference i noticed is the Sinus Pulse holds a bit more water but empties quicker and is more just like a steady stream. The Hydro Pulse had a stronger pulse and rinses lasted a bit longer. But they both do similar things of running water up your nose and through the sinus areas.

I had not noticed a big problems in my sinus rinses this summer but when i went to my dentist about pain on top right side while chewing, he informed me I had a sinus inflammation. Nothing in the rinses looked like the gunk i had early this year when I knew i had infection in my sinuses so I was skeptical about taking the Clindamycin antibiotic but decided to take it after consulting with my pharmacist and the pain went away rather quickly. An ENT doctor said the antibiotic sometimes help settle down an irritation or inflammation. I had no other pain in my sinus areas, just when I chewed or put pressure on the top back teeth.

The ironic thing is that while searching for a problem in my teeth the dentist did discover a problem that required a new crown even though it was not causing any pain or problem for me yet.

So now my nasal passages seem to still be open most of the time after my morning rinse to clean out the gunk from the night sleep. Usually there is no blood or big boogers, just mucous. I rinse every morning and some times in evening too if sense any blockage.

Summer is ending and cooler weather will bring on the dry winter season. I have had sinus infections and bronchitis every winter for the past four years. They usually last from a few weeks to a few months and are probably related to low humidity and the increased indoor activities to help spread colds and infections around. But maybe I will get lucky this year and not have the usual problems. Last winter I also developed an allergy to my go to med of Azithromycin which might make treatment more difficult.

[drz]

My Sinus Pulse machine also died after a few months. The reviews indicate both the Sinus Pulse and Hydro Pulse have both records for durability and aren't real cheap either at 80$ each so i wonder if there is any better made sinus rinse machines on the market that might last longer than a few months. I think the machines do a a better job than the squeeze bottles so I would prefer them but hate to have to replace them every 4 or 5 months. My old Grossan Hydro Pulse lasted several years but it wasn't made in China and cost a lot more when I bought it.

[vdub]

Have either of you had any surgery on your sinuses to open the air channels? Mike or drz?

[drz]

Have either of you had any surgery on your sinuses to open the air channels? Mike or drz?

NO, I haven't. Just the usual probes to peek up the nose. Some MRI's to check for infections also suggested probable infections in the sinus areas.

I was looking at buying a new sinus rinse machine and noticed they listed a two year warranty on the Sinus Pulse. I checked an mine was delivered Aug 6th so I contacted the company by internet message and they called me back in a few hours. It was some one who was involved with Water PIk machines when they came up with the idea to build a special machine for sinus rinses and then they developed the Grossan Hydro Pulse. later some problems developed for them working with Grossan's family, he is still alive and in his 90's, so they started developing the Sinus Pulse machines. The have made some improvements over the years.

I found out by doing the tests he suggested that my machine might still be working but maybe my GFI protection outlet in the bathroom is defective so I will get that replaced since it worked on outlets in other rooms but I can't used it in the hall way very easily, but can use an extension cord to use it in the bathroom till I get a new outlet. If the machine malfunctions again, they will replace it.

I also learned what the atomizer extension is for, like spraying an antibiotic into the nasal areas. He said Johnson Baby Shampoo also seems to have some properties to retard bacteria and fungus. There are other solutions one can buy to add to the rinse container to help stop infections. He said only 3 or 4 oz is needed for this purpose. Some holistic alternatives are often used too by users. This was good information to learn. I hope by adding these to my rinse routine that I might get through a winter without getting bronchitis and sinus infections.

What have others found helpful?

[Debbie C]

Drz, Did he say to put baby shampoo in your machine ???? Wouldn't you be blowing out bubbles :smile:
I am the same way now with the furnace running, my nose is real dry.I have a tube of saline nasal cream that keeps it moist but haven't used it yet.Wasn't Mike and Phil using the water pik thing for rinses? I don't think I would be wanting to use to much antibiotics in my nose but I am against those unless ABSOLUTELY needed.
I say all of us should go rent a big house in Fl. for the winter and and get out of this crap.

[Birdie]

I say all of us should go rent a big house in Fl. for the winter and and get out of this crap.

Only a crazy person would leave Arizona for Florida.

[Pete]

Only a crazy person would leave Arizona for Florida.

Then you need to get your strength up so you can play golf with Dirty Don. :)

[drz]

Drz, Did he say to put baby shampoo in your machine ???? Wouldn't you be blowing out bubbles :smile:
I am the same way now with the furnace running, my nose is real dry.I have a tube of saline nasal cream that keeps it moist but haven't used it yet.Wasn't Mike and Phil using the water pik thing for rinses? I don't think I would be wanting to use to much antibiotics in my nose but I am against those unless ABSOLUTELY needed.
I say all of us should go rent a big house in Fl. for the winter and and get out of this crap.

Nice thought. We could get together for a warm weather break from winter. We have our first freezing days for this Fall and it is hard to adjust to the change. We know that in a month or two we would consider 15 F a nice warm day but today it feels cold.

I did use a small squirt of Baby shampoo and and a few drops of peroxide last winter in my frequent rinses and I think that is what finally cleared up my sinus infections and bloody rinses. it does bubble up when i rinse the machine afterward but it doesn't come out as bubbles during the rinses.

[Debbie C]

Only a crazy person would leave Arizona for Florida.

I forgot you were in Arizona with Don...the only thing bad about it there,is that there is no ocean. But in a pinch Arizona would work for the winter...........got in extra room for a crazy lady !!!!!

[Birdie]

I forgot you were in Arizona with Don...the only thing bad about it there,is that there is no ocean. But in a pinch Arizona would work for the winter...........got in extra room for a crazy lady !!!!!

Got three extra bedrooms, empty, no furniture, no stuff, just rooms.

[whatthewhat]

O lordy. Our daughter went to a horrid ENT when we first moved back to SoCal; 6 months after dx she had developed a weird cough and an extreme shortness of breath. The horrid ENT said no way could it be stenosis, that stenosis would have been present from birth, oh, and why don't you put a couple drops of Johnson's Baby Shampoo in your nasal rinses? Our daughter did, because she's a rock star, but I still get queasy now when I smell the stuff, because watching her do that and seeing the bubbles come out was awful*. Thankfully the next ENT, who is also the current ENT, said he thought it would not be helpful in any significant way. *and I say this as someone who used a ruler in photographs of crusties she was removing from those same wee nostrils. You'd think I can handle anything...

[annekat]

I did try Johnson's baby shampoo in my rinses when it was mentioned on here some time ago. I did find that it helped to loosen stuff up and get stuff flowing, but everyone's stuff, and their anatomy, is a little different. I'd give it a shot if I knew there was a bunch of stuff in there that was being super resistant to coming out. Now, I have a lot less mucus, because my nasal cavity is obliterated and there aren't many places for it to be manufactured or to collect. So I'm not bothering with things like the shampoo. But I do need to rinse still, because there is still stuff collecting, I think mainly around where my septum used to be, and there are still some jagged bony areas where it could get caught. I do think the water pik idea could be a really good one, if you get the proper nasal attachment... I have never tried it.

[annekat]

O lordy. Our daughter went to a horrid ENT when we first moved back to SoCal; 6 months after dx she had developed a weird cough and an extreme shortness of breath. The horrid ENT said no way could it be stenosis, that stenosis would have been present from birth, oh, and why don't you put a couple drops of Johnson's Baby Shampoo in your nasal rinses? Our daughter did, because she's a rock star, but I still get queasy now when I smell the stuff, because watching her do that and seeing the bubbles come out was awful*. Thankfully the next ENT, who is also the current ENT, said he thought it would not be helpful in any significant way. *and I say this as someone who used a ruler in photographs of crusties she was removing from those same wee nostrils. You'd think I can handle anything... Well, that horrid ENT sounds like he needs to go back to medical school, or better yet, find another career that requires less thinking. Even fairly "good" ENTs and other docs tend to be blase' about these things and will make general statements that don't seem helpful. Like they're trying to shirk the responsibility of really looking into things. I've wondered about stenosis from time to time because of breathing and coughing problems. I think I probably don't have it, because my problems come and go, and I think are caused more by mucus running down from the nasal cavity and building up in the trachea and bronchii, becoming thicker, obstructing breathing, and becoming harder to cough up. My ENT said that if I had stenosis, I would have a "stridor", or noise on exhale. I do have that sometimes from the stuff collecting in there. Maybe he meant I'd have it all the time. Typical doc-like vagueness. I did get my trachea scoped a couple of times before dx, due to all the issues I was having, such as barely being able to talk. No stenosis seen at that time, I guess, though I never heard the word until I came to this forum, just before dx. I have not had any scoping for stenosis done by either the ENT or the pulmy since dx. So I guess they don't think I have it. All I get are pulmonary function tests, which tend to go up and down. And I do have seasonal asthma, which enters into things, if I can even get the pulmy to acknowledge that I can have it while being on WG drugs, which he finally did. So I finally have inhalers to help me breathe, and it seems to me they help with the WG coughing and wheezing, too, not only asthma. Some may say otherwise.

[Birdie]

Typical doc-like vagueness.

I think they're so pressed for time that even the best doctor can't do well on every point. I try to push hard on the most critical issues, things I can't or shouldn't research on my own.

[annekat]

I think they're so pressed for time that even the best doctor can't do well on every point. I try to push hard on the most critical issues, things I can't or shouldn't research on my own. I think that is true, but they also tend to be overly dismissive when answering peoples questions or concerns. I've had docs that weren't that way. My PA is more attentive to questions, as was a former GP whom I had to quit because his group had decided not to take my low-paying state-sponsored insurance anymore.

[jlove]

My ENT also recommended Baby Shampoo in the nasal rinses but I don't think it makes too much of a difference for me as opposed to saline without the shampoo. One thing that's very helpful for me is using lanolin in my nose to keep it from getting too dry. I use Q-tips to coat the inside of my nostrils with it, which was recommended to me by a colleague of my ENT's. Especially as I head into winter where I live, dryness in my nose can make crusting worse or, at the very least, it makes it harder for me to remove the crusts. I think the lanolin prevents the crust from taking the walls of my nose with it on its way out. I use it at least 5 times a day. The only downside for me, is having to explain to my friends why I carry around "soothing relief for sore nipples" or maybe being caught occasionally sticking a Q-tip up my nose. Otherwise, I'm a big fan!

[drz]

My ENT also recommended Baby Shampoo in the nasal rinses but I don't think it makes too much of a difference for me as opposed to saline without the shampoo. One thing that's very helpful for me is using lanolin in my nose to keep it from getting too dry. I use Q-tips to coat the inside of my nostrils with it, which was recommended to me by a colleague of my ENT's. Especially as I head into winter where I live, dryness in my nose can make crusting worse or, at the very least, it makes it harder for me to remove the crusts. I think the lanolin prevents the crust from taking the walls of my nose with it on its way out. I use it at least 5 times a day. The only downside for me, is having to explain to my friends why I carry around "soothing relief for sore nipples" or maybe being caught occasionally sticking a Q-tip up my nose. Otherwise, I'm a big fan!

Another alternative to prevent crusting and keep the nasal area moist is to use the commercial nasal gels. I like the ones by Ayr and Neil-Med. Neil Med comes in a spray bottle so it is easy to apply. Ayr is a tube sort of like those used for chapped lips. I was told another cheap alternative is to apply common K-Y jelly to crusts to soften them up so they rinse out easy without causing bleeding. And a dermatologist also suggested using it on dry skin to avoid itching since it has no alcohol content to dry out your skin.

So far I am having pretty good luck rinsing once or twice a day and taking generic Muccinex to keep mucous thin and and flowing to avoid the buildup. It is also essential to have adequate humidity too in the winter time here once the heating season starts.

[Realpro325]

Drz,
I have had major sinus problems my whole life. I have come up with a system that works for me. I shower every day and rinse my nose after the shower almost every other day with a netti pot of some kind with my own Alkolol solution that the pharmacist helped me with that includes essential oils and home made saline to my liking. I also use two different kinds of nasal spray daily. One is afrin of some kind and fluticasone. The main thing I try to do is rid my nose of mucus with spray each time it gets full and this will keep the infections down as long as you rinse when you feel any substantive irritation from the sprays as they are the culprit. Yes many doctors will tell you not to use afrin spray but my rheumy says I can use all I want as it has worked for me even though some people can't go this route as long as you don't over shrink your nasal passages you won't have to many nose bleeds. I also use nasal strips at night to help me through until the morning. Only buy the good strips as those cheap clear strips are not working for me anyway. I hope this helps you. Let me know. Be blessed.

Merry Christmas,
James

[Titus3:2]

This thread is the reason I popped back in,but it took me a while to find it.The baby shampoo really works.I have been irrigating my nasal cavity two to three times a day since the nineteen eighties.GPA has not been active there for a while.My ENT scoped me through my nose ,and not long after my nasal cavity became extremely inflamed.So,I went back to my ENT thinking it was infection or GPA was back.He told me it was because there was no tissue to keep it moisturized.Well,why wasn't it so inflamed before.I could also feel crusts in there,and it was driving me nuts that I couldn't get them out.I googled nasal irrigation,baby shampoo,and found a study by Baylor.I think.Started adding a teaspoon of the shampoo to my normal mix.After three days my nose felt much better.Around day five the green crusts started coming out.I have not had crusts like that in a very long time.I think the ENT docs scope was contaminated.Thanks DRZ!

[Alysia]

This thread is the reason I popped back in,but it took me a while to find it.The baby shampoo really works.I have been irrigating my nasal cavity two to three times a day since the nineteen eighties.GPA has not been active there for a while.My ENT scoped me through my nose ,and not long after my nasal cavity became extremely inflamed.So,I went back to my ENT thinking it was infection or GPA was back.He told me it was because there was no tissue to keep it moisturized.Well,why wasn't it so inflamed before.I could also feel crusts in there,and it was driving me nuts that I couldn't get them out.I googled nasal irrigation,baby shampoo,and found a study by Baylor.I think.Started adding a teaspoon of the shampoo to my normal mix.After three days my nose felt much better.Around day five the green crusts started coming out.I have not had crusts like that in a very long time.I think the ENT docs scope was contaminated.Thanks DRZ!

Check this thread as well. Lots of good advices from my beautiful dr. Phil ♡

http://www.wegeners-granulomatosis.com/forum/general-wg-chat/114-sinus-irrigation-bottle-do-you-know-about-8.html

[Titus3:2]

Alysia,thank you.Phil was very knowledgeable,and his knowledge lives on.My next comment will be at Phil's "Mammoth Thread".

[Debbie C]

I don't know whats been going on with my nose but it will turn ice cold. So cold that it hurts. I hope it isn't on the verge of collapsing. Has anyone else's done this and then ended up with saddle nose or something else ?

[debra]

Deb, hi, again... Deb, I had this, and although its changed a little, no it hasn't saddled... Yet!!! This of coarse would not surprise me, but no, not going there to making myself sick, the way I did in the past! Deb, there's no longer any real sensation there anymore, and don't know what to make of that. A bee could land on my nose, sting me, and book, and I wouldn't even know it... But its been four years May, no treatment, and still my nose, just slightly different, but to me, its a bigger deal of coarse... Good luck, Deb... Debra...

[Alysia]

I don't know whats been going on with my nose but it will turn ice cold. So cold that it hurts. I hope it isn't on the verge of collapsing. Has anyone else's done this and then ended up with saddle nose or something else ?

I never felt cold nose. Only warm. My saddle nose is the result of many years of nose bleeding and crusting. Anyway, if it continue please ask a dr. It is common among those with scleroderma.

[debra]

Alysia, great advice, mentioning the S word here! I did show signs of this in the beginning, for about two years... No tears ect. So this is amazing advice, I never would of even thought of... Yes Deb, like Jack used to say, just cause you have one, doesn't mean you can't have another... My endo, told me years back, once one autoimmune issue shows itself, others may follow... Not always, but... It seems the dog, wants friends in some to help with his dirty work... Debra...

[Helen]

Once again, had an ENT appt. which did not go well. I was told by Gastro. to see the ENT for my nose/ear issues and due to "policy" (that I never heard of), I was not allowed a new ENT (2nd opinion) but back to the same one I had in past who did not help then. My sinuses have been so bad over the years that I've had nearly 5 procedures ranging from polyps to fixing collapsed nasal turbinates etc. a lot of ear cartilage used to support it. Had Staph. during my only nasal culture two years ago along with elevated WBC, and the Dr. dismissed it. Radiology dx. "Chronic Sinus Disease" over many years w/ unknown reason. My corrupted sinuses affected my ears/hearing.

The ENT quickly dismissed Wegeners, even w/ hole in septum and the constant bloody crusting inside. They bleed at times and I constantly have that uncomfortable feeling in my nose requiring to pick which is always bloody crusts. He said Wegeners don't have this, they specifically have a lot of green snot crusting and eroded bone and that my modified sinuses were "likely" caused by past surgeries. Again No culture test, no catscan, just a quick look by nasal scope. Saying the polyps, bloody nasal crust, inflammation in throat is "normal". Left at that.

Again, the ENT was not interested to know WHY i had so many procedures over the years, which was caused from sinus disease! Also, my eustachian tube feels dysfunctional...it feels to unable to close, so there's lot of air ventilation feeling through the ear with roaring rushing tinnitus 24/7. I feel the muscles from sinuses to eustachian tube became fragile and just "broke" right after ear surgery. ENT claims he is unable to investigate to look. I asked him to please look into my middle ear. I don't understand how they're unable to? He said go see (once again) a Neuro-oto. instead. In past, NONE of them would evaluate the sinuses as not related to ear or hearing problems.

Do others here only have green crust snot and erosion of a bone that dx your Wegener's?
I am so frustrated and really suffering with these ongoing symptoms. I do rinses and steam helps.
What did other Wegs. have for this work-up that confirmed their diagnosis? I don't understand why i constantly have these sinus/ear issues and be told they're incapable to investigate further. -H.

[drz]

Bloody crusts and frequent bleeding caused by removal of crusts were one of my first signs of GPA and I believe the most common symptom of GPA (Wegener's).

[annekat]

Once again, had an ENT appt. which did not go well. I was told by Gastro. to see the ENT for my nose/ear issues and due to "policy" (that I never heard of), I was not allowed a new ENT (2nd opinion) but back to the same one I had in past who did not help then. My sinuses have been so bad over the years that I've had nearly 5 procedures ranging from polyps to fixing collapsed nasal turbinates etc. a lot of ear cartilage used to support it. Had Staph. during my only nasal culture two years ago along with elevated WBC, and the Dr. dismissed it. Radiology dx. "Chronic Sinus Disease" over many years w/ unknown reason. My corrupted sinuses affected my ears/hearing.

The ENT quickly dismissed Wegeners, even w/ hole in septum and the constant bloody crusting inside. They bleed at times and I constantly have that uncomfortable feeling in my nose requiring to pick which is always bloody crusts. He said Wegeners don't have this, they specifically have a lot of green snot crusting and eroded bone and that my modified sinuses were "likely" caused by past surgeries. Again No culture test, no catscan, just a quick look by nasal scope. Saying the polyps, bloody nasal crust, inflammation in throat is "normal". Left at that.

Again, the ENT was not interested to know WHY i had so many procedures over the years, which was caused from sinus disease! Also, my eustachian tube feels dysfunctional...it feels to unable to close, so there's lot of air ventilation feeling through the ear with roaring rushing tinnitus 24/7. I feel the muscles from sinuses to eustachian tube became fragile and just "broke" right after ear surgery. ENT claims he is unable to investigate to look. I asked him to please look into my middle ear. I don't understand how they're unable to? He said go see (once again) a Neuro-oto. instead. In past, NONE of them would evaluate the sinuses as not related to ear or hearing problems.

Do others here only have green crust snot and erosion of a bone that dx your Wegener's?
I am so frustrated and really suffering with these ongoing symptoms. I do rinses and steam helps.
What did other Wegs. have for this work-up that confirmed their diagnosis? I don't understand why i constantly have these sinus/ear issues and be told they're incapable to investigate further. -H.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.

Crusts and blobs of mucus with Wegs can be greenish or bloody or both. Drz is right that removal of crusts can lead to bleeding, and it's also true that blood can appear on its own, generated by the damage done to blood vessels by Wegs itself. Any unusual amount of blood, attached to crusts or free flowing, is suspect, and given the hole in your septum and all your other issues, you need to find out for sure if you have Wegs, from someone experienced, and if so, you need to get treated ASAP. Also, if your insurance will not allow you a second opinion, I think you need new insurance, or just see someone on your own if that's possible.

It makes me angry that you are going through all this with no resolution and being treated the way you are.



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[drz]

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.

[annekat]

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.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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[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.org/granulomatosis-polyangiitis-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.


Sent from my iPhone using TapatalkI 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.

[NatriceRomeo]

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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Hi Helen, I take it you have not medically been diagnosed with WG? The way these people have treated you makes me so sad & worries for you. With your insurance do you need a referral? If you do not I would go to a different health care system (where I am we have SSM, BJC, Mercy, ect) & try that route. I would also call your insurance company and make a complaint about this ENT. They have nurses & other support staff that can help you. I hope all is well! My thoughts are with you!
Natty


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[Alias]

That is an excellent article from a very credible source. I note that the doctor is generally not in favor of nasal biopsy except in very limited circumstances. I know others have different experiences, but I will say again that a biopsy is often not diagnostic and has more risk than benefit. In my case the biopsied nasal passage has irreparable damage, worsening my long term outcome, and there was no reason to do it since the serology was already convincing for a GPA diagnosis. Possibly the question to ask when considering a biopsy would be, how would my treatment differ if I had a biopsy? I wish I had asked that question, since I'm positive I still would have received the standard GPA protocol.

Regarding mupirocin (bactroban) I use it dissolved into a basic saline rinse, but only occasionally. I will have to look into the NAC, as the post nasal crap is the bane of my existence these days.

[annekat]

That is an excellent article from a very credible source. I note that the doctor is generally not in favor of nasal biopsy except in very limited circumstances. I know others have different experiences, but I will say again that a biopsy is often not diagnostic and has more risk than benefit. In my case the biopsied nasal passage has irreparable damage, worsening my long term outcome, and there was no reason to do it since the serology was already convincing for a GPA diagnosis. Possibly the question to ask when considering a biopsy would be, how would my treatment differ if I had a biopsy? I wish I had asked that question, since I'm positive I still would have received the standard GPA protocol.

Regarding mupirocin (bactroban) I use it dissolved into a basic saline rinse, but only occasionally. I will have to look into the NAC, as the post nasal crap is the bane of my existence these days.I think it's great if they can get enough info for a dx without a biopsy. In my case, I was lucky, it went well, was easy, and yielded results. Others might not be so lucky. Also, there might not be any other good spot from which to take a biopsy if nasal and sinus is the only involvement. A very experienced WG doc would be the best to judge whether a biopsy is needed for a dx, I'd think. It would be nice if biopsies became a thing of the past for diagnosing WG.

My rheumy drew a blank when I mentioned NAC but my new pulmy is in favor of it. Give it a couple weeks, maybe less, for it to noticeably help. I just get a lot less of the nagging cough from post nasal drip and less having to explain to people that I don't have a cold. And when I do cough, it is more productive.

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[drz]

I discussed NAC with my internist and he recommended I stay with the the generic Muccinex since there are risks of side effects with NAC. Read about them before you try it.

[annekat]

I discussed NAC with my internist and he recommended I stay with the the generic Muccinex since there are risks of side effects with NAC. Read about them before you try it.Always a good idea. Here's WebMD's list of uses, possible benefits, and possible risks. I haven't experienced any of the possible side effects. But this is the only place I looked.
https://www.m.webmd.com/vitamins/ai/ingredientmono-1018/n-acetyl-cysteine

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[jill1616]

I have used the Mupirocin (Bactroban )in my nasal rinse. It's easy to do it yourself. To 1 liter ( or 1 gallon) of distilled water I add first 4 packets of saline, then 1/2 tube the mupirocin. I find if you let it sit a couple of hours it dissolves on its own into the saline water. Then just shake well. I fill a clean coffee mug with the solution and warm in the microwave for 30 seconds, do the rinse. My dr. and pharmacist said the warming was fine.
Well, that worked well for me awhile, then after 6 months or so it wasn't working as well.
My ENT retired, I got a new one. After some research she had me try Gentimicin in my rinse instead. It's prescribed as an injectible. I have to pry out the little grey port and pour it in my saline bottle. I let it sit a little, and shake well. My dr. said I can use it when I need to, which I only do when I've got trouble.
The theory is that my sinuses have seldom been free of infection. I had 2 sinus surgeries 10 years apart due to sinuses being so infected they sealed shut. Latest ENT said I'm lucky that those surgeries did not cause deformities to my sinuses because of the Weg.
I've had life long sinus issues. When I was a kid the dr. would paint my sinuses with some horrible tasting stuff and put me under a heat lamp. I was the kid running around the neighborhood with a kleenex stuck up my sleeve.
Well, it's late. Time to stop.
Good night all.

[annekat]

Wegs has eroded away all the parts of my sinuses that collect mucus, and the turbinates, so that my nasal cavity is one big hole. There is still mucus produced around the top of my nose, but not as much as before. The good news is that I will never have sinus infections again, according to my ENT, because there's no place for mucus and bacteria to collect. I still do saline rinses. So it's sort of like the sinuses and turbinates did surgery on themselves, with help from Wegs. I'm not saying it's a good thing for one's sinuses to erode away, and every case is different, but it hasn't been a problem for me, except for one thing: I have double vision, and they did an MRI and think it's because of erosion into the bottom part of the eye socket, which is above the maxillary sinuses and supports the eyes. I hope to look into this some more.

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