Sinus wg

[LaurenGoodwin]

Hi Weggies!

Im currently being treated with Methotextrate, predisone, folic acid, birth control

My inflammation is being controlled and doing great but my bacteria in my nose isn't. This is a vicious cycle I know but is anyone else being treated with something different for the bacteria in there nose?

[Alias]

Not sure what you mean by bacteria. You have a persistent or recurring bacterial infection in your nasal passages?

I'm not sure if Bactrim specifically treats sinus/nasal infections, but it is commonly prescribed to GPA patients as a preventive antibiotic. There is also a topical antibiotic ointment called Bactroban which can be swabbed into your nostrils and/or dissolved in a nasal rinse. (If you are not doing nasal rinses on a routine basis, you might want to consult your doc about it.)

[LaurenGoodwin]

Hi yes i have an overgrowth of bacteria. My understanding when you have wagerers in your nose is comes with bacteria. I've been on bactrim many times and it barely helps and seems to not be able to get rid of it. I have also used the ointment but the overgrowth of bacteria is mainly in my cheek sinus which you can't really get into by yourself. as for a nasal rinse I am not really able to do that because when I do a rinse it drains me and doesn't make me feel good AT ALL and I need to function during the day. anything else you've heard of?

[drz]

Bactroban sinus rinses can be used for severe nasal or sinus infections. I have had it prescribed once but it was very costly to make up the rinse for me so be sure your insurance will cover it first. It is made from Mupirocin and had to be kept frozen till use. Some times doctors will suggest other additives that also have some germ fighting ability. I have used peroxide and baby shampoo as additives to my sinus sinus rinse for serious persistent infections. Others have used a mild tincture of iodine. The shampoo seems to also help loosen tough crusts. Your ENT may suggest other additives but any such additive should be checked out with your ENT to be sure it is right thing for you. Some times they have to culture it to find out what will be most effective to treat an infection.

[LaurenGoodwin]

your rinse sounds interesting! i really need to try rinses again i just really need to function during the day and those rinses make me feel miserable for some reason.

[Alias]

The Bactroban I have comes in a tube and is not expensive at all, at least with insurance, but I think the full retail was not shocking either. I was instructed by my ENT to simply squeeze it into my rinse bottle and dissolve it as best I can by shaking it with the water/saline solution.

Lauren, it's not clear from what you've said that a doctor has told you that you have an infection, or what you mean by an overgrowth of bacteria. In any case I hope they get it figured out and you get some relief soon.

[LaurenGoodwin]

why do you use the rinse if you don't have bacteria in your nose? Im confused why everyone isn't going through this ha. my last culture test for the bacteria in my nose taken in november:


Gram Stain Result
Rare polymorphonucleated white blood cells
Rare red blood cells
Rare Gram positive cocci
(Performed at C.A.L.M.)



Body Site Culture
Staphylococcus aureus
Heavy
Identification performed by Mass Spectrometry( Maldi-ToF).






but they described it to me as an overgrowth of this bacteria because of my inflammation.

[Alias]

Gosh, based on a quick Google, it appears that many people carry this kind of staph in their noses, but whether it is dangerous for you or not is something a doctor would have to tell you.

For those of us with nose/sinus damage, regular (or at least occasional) rinses help to keep the area clear of debris, since our noses don't function normally anymore and take care of that business on their own.

It sounds like you really need medical advice on this, and nobody on this forum is qualified to give medical advice.

[LaurenGoodwin]

hmm thats so interesting i thought everyone had this problem! I don't even know how to go about this bacteria issue then, I've done some research and it hasn't led me anywhere. maybe ill make another thread just seeing if anyone has heard of this. i feel like once this bacteria is gone i will be able to hit remission. I've seen a ENT and a infectious disease doctor and they both seem a lil confused but also there not really addressing it bc its a "normal" bacteria in the nose. it won't be until winter til i move and get to see a more WG specialist

[MikeG-2012]

Hi Lauren!

My ENT has been pretty progressive with my disease and helping me. Here's what we've tried over the past 6 years:

-- NeilMed Sinus rinse bottles (wore out about a dozen)
-- Graduated to a waterpik and/or sinupulse machine and have had great results- it is actually more mild than the squeeze bottles
-- Each time I have an infection, he sends it out to culture to see what antibiotic works. No sense treating with antibiotics that will not work, right?
-- We've used gentamyacin rinse (commonly referred to as Wilsons Solution
-- We've used bactroban solution (bactroban ointment dissolved in sterile saline)
-- Doxyxycline oral antibiotic
-- Budesonide nebulizer solution in nasal rinse
-- Working with my ENT, he showed me how to take the tip off of one of the waterpik nasal wands and work it up into my nose to get the rinse directly on the crusts.
-- Working with my ENT, I started holding saline and antibiotic risnses into my sinuses and nose for a minute or two to coat the areas with the topical a little longer.

By far, the two things that I would recommend is to have the culture done each time you have an infection, to make sure that you get the proper treatment each time.

Rinse, rinse, rinse, RINSE! Nasal rinsing has been the single best thing I have done to conquer this stupid disease in my sinuses. At one point, I was running 6-9 liters of saline through my nose a day (3 liters each at morning, noon and night).

If you have any more questions, please let me know. I will be glad to answer any you may have.

[LaurenGoodwin]

how did you like the nebulizer?! i think i really wanna try that next?

[MikeG-2012]

Helped my LUNGS in the nebulizer, but what I said is that we used the little steroid vials used for nebulizer inside the Neil-med bottles to get steroids into the nose and sinus topically.

[Alias]

I continue to use the NeilMed bottles, with the provided saline packets, distilled or purified water, and sometimes Bactroban dissolved in the water. It doesn't really completely dissolve, but it gets where it needs to go. I also have a prescription for Budesonide, but have not used it in a while. It comes in little 2ml plastic vials, and gets added to the rinse solution. This drug is a corticosteroid developed for treatment of asthma, I believe, but is effective for treating nasal inflammation.

Again Lauren, it's not clear from what you said that a doctor has diagnosed an infection. You might consider seeing a doctor sooner rather than later if you have signs of infection, or even if you don't, so you can discuss measures (like rinsing) to make you more comfortable.

[annekat]

Lauren, from my point of view, we do the rinses to prevent too much build up of mucus in the sinuses, nasal passages, and nasal cavity, because the excess mucus we get with WG, which tends to be crusty and hard to remove, will block up any openings so things can't flow out freely, which will promote buildup of any bacteria, whether harmful or not, and will promote infections along with the tissue damage that occurs from damaged blood vessels and lack of oxygen with this disease. I was doing the rinses for 2.5 years before dx, when I was simply thought to be prone to allergies and sinus infections. Once I was found to have Wegs, things fell into place and I got treated, but by that time, my septum had collapsed and I had saddle nose. If you want to avoid that, you'd do well to rinse diligently, and maybe you could do it at night instead of during the day. Also, have your ENT periodically remove the built up gunk in your sinuses. They use a vacuum system to help, and they are good at it. You'll be surprised at what comes out of there by either method. Getting the gunk out will leave a lot less place for any excess bacteria to grow, and that along with your Wegs meds will be reducing the inflammation that can cause permanent damage. You may get to the point where you enjoy seeing that stuff come out, and it will become less as you recover. Good luck.

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[Bing505z]

Bactroban sinus rinses can be used for severe nasal or sinus infections. I have had it prescribed once but it was very costly to make up the rinse for me so be sure your insurance will cover it first. It is made from Mupirocin and had to be kept frozen till use. Some times doctors will suggest other additives that also have some germ fighting ability. I have used peroxide and baby shampoo as additives to my sinus sinus rinse for serious persistent infections. Others have used a mild tincture of iodine. The shampoo seems to also help loosen tough crusts. Your ENT may suggest other additives but any such additive should be checked out with your ENT to be sure it is right thing for you. Some times they have to culture it to find out what will be most effective to treat an infection.


Sinus rinse is a must…daily…weekly… also Bactroban is a must also…My ENT had me use Mupirocin, google it …

[LaurenGoodwin]

I guess my main confusion in all this is way the bacteria in my nose grows so quickly. i get debridements (a doctor cleans out my sinuses) pretty frequently i get them done even 2 weeks! but I've noticed that after i get a debridement done my nose will fill up (in my cheek) within hours! like its almost an everyday thing that i have to clean out my nose (with tweezers)! I've been on multiple antibiotics and it helps but doesn't help enough. and although everyone is saying rinse its not really helping in my case. for example say i get a debridement my nose is completely clear and i start rinsing to keep it clean. as soon as i stop rinsing or go to sleep and wake up the next morning my sinuses are filled again. its very frustrating. I've never tried shampoo or anything so i will bring that up the next time i go to the doctors maybe that will help break it up. but the other thing is that i need to be functioning during the day and when i do a rinse it drains me and i don't feel good the rest of the day i don't understand it or why that is. but i recently just looked up a nebulizer which might be better? since I'm sniffing it in rather than having solution pour through my sinuses? i have no clue ugh. but thank you guys for responding! I'm going to bring up all this with the doctors when i go. i need to switch doctors but I'm military and tricare has not been making it easy for me. so i was trying to wait til i move in september.

[annekat]

I think as Mike said or implied, that nebulizers are designed for the lungs and breathing through the mouth. I don't know if there's anything comparable for nose breathing. But you could try inhaling warm steam from a bowl of water, towel over head, to loosen things up and get them flowing. I don't know if it would help to add meds to the steamy water, but water by itself is harsh, so you can add soothing and therapeutic herbs such as peppermint or eucalyptus, or even salt, to make the steam more mild. I used this method a lot early in my Wegs, both for my lungs and sinuses. And I would wait until after this to do my sinus rinse.

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[annekat]

You could also ask about using a steroid nasal spray such as Flonase or Nasocort, if you aren't already, to reduce inflammation in the nose and sinuses. These are now available OTC.

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[LaurenGoodwin]

I've seen a sinus nebulizer that has an attachment just for your sinus. and that you add steroids to the nebulizer to inhale. its an alternative kind of method than a rinse. i have used flonase before! and i defiently want to get a diffuser for those essential oils!

[MikeG-2012]

I too had recurring crusting, even after the doctor cleaned them out. In less than a day, I would crust right back up. It was explained to me that removing the crusts was like picking a scab off of an infected wound. Once removed, the scab is gone, but the wound is still infected, and will scab over again. Treating the infection after the scab is removed, is really the best way to treat it.

If your ENT is not culturing the bacteria (probably a strain of staph) and prescribing the right antibiotic for it, you will never be able to get on top of the infection. I do believe you need to have the right oral antibiotic as well as a liquid one that you can rinse into your nose and sinuses to get ahead of these infections.

In my case, just rinsing with a single squeeze bottle (even 2-3 times a day) was not nearly enough to keep my nose clear. I too was in the ENT office weekly to have crusting removed.

Like I said, I was running 3L (a gallon) of saline through my nose two times a day, sometimes THREE times a day. That was the only way for me to stay clear. My ENT says this is probably the single best thing that could have been done to help get my nose and sinuses back under control.

Now that we have the staph infection under control, I am down to rinsing about every 2-3 days. I still do the 3 Liters though.

Does that help?

[LaurenGoodwin]

yay! thank you I'm finally not alone with this awful crust! what are some of the antibiotics you use? do you get any pain when you rinse? idk if this is true for you but my inflammation is only on one side of my face so in my right nostril and i can feel it sometimes above my right eyebrow. when i do rinses its a lil painful...it drains me so I'm exhausted afterwards and makes my eyes feel weird and sometimes shoots pain up to the area on my forehead. I'm going to try and really do these rinses now i just hate how they make me feel.

[mishb]

yay! thank you I'm finally not alone with this awful crust! what are some of the antibiotics you use? do you get any pain when you rinse? idk if this is true for you but my inflammation is only on one side of my face so in my right nostril and i can feel it sometimes above my right eyebrow. when i do rinses its a lil painful...it drains me so I'm exhausted afterwards and makes my eyes feel weird and sometimes shoots pain up to the area on my forehead. I'm going to try and really do these rinses now i just hate how they make me feel.

Hi Lauren, and welcome to you, from me, in Australia.

My nose is clear for a good hour after rinsing, and then I can feel it crusting over again. I can't rinse every hour, so unfortunately, it just crusts until I can do it again.
Like Mike, Anne and the others have said, you really need to rinse a couple of times a day, to get the infection under control.

It has been 7 years for me with crusting, and a further 18 months (pre diagnosis) with large tiger slugs being pulled out of my nostrils (that's all I can liken the big slimy things to) The sinuses and the nose slugs do get better, with treatment and rinsing or very hot steamy showers if you really can't rinse.

With the rinsing, make sure the water is the same temperature as your blood (basically). If its too cold, it really can hurt and give you a cold icecream headache. Too hot, and well, that's not a god thing either. Please make sure that you are not using tap water.

Please give it another try, and hopefully you will see less of the slugs, and therefore less of your ENT nose picking sessions (I found that these hurt more than the rinses, unless the ENT used the special numbing spray - I love that spray, it makes everything stop hurting).

Take care, and know, that it does get easier

[Pete]

Hi Lauren,

Some of the folks on here use a special WaterPik to get deeper into their sinuses. Perhaps one of them will chime in with more info.

[MikeG-2012]

yay! thank you I'm finally not alone with this awful crust! what are some of the antibiotics you use?

See earlier post where I list them all. Really doesn't matter which one I used. You need the ones that WORK FOR YOU!! Have your doctor culture the bacteria and it will come back with pathology that has a list of drugs that are effective in treating that strain of bacteria. You wouldn't put antifreeze in your oil fill in your car would you? (-8


do you get any pain when you rinse?

Not any more, but I did when it was bad. Remember it is not the pressure that removes the crusts, it is the saturation of the saline that softens them up so they will come out. So more gently given, not fewer really hard squeezes. When my crusting was bad, I had four different prescription pain pills in my drawer at home. Each were for a different level of pain from the nose and sinus inflammation.


idk if this is true for you but my inflammation is only on one side of my face so in my right nostril and i can feel it sometimes above my right eyebrow. when i do rinses its a lil painful...it drains me so I'm exhausted afterwards and makes my eyes feel weird and sometimes shoots pain up to the area on my forehead.

I think you might be forcing it too much. Be gentle and repeat until it all comes out. If you feel it flood your ears, you're being too aggressive with the bottle.


I'm going to try and really do these rinses now i just hate how they make me feel.

It should get better over time, once the meds start working and the crusts start to get less frequent.

See the post HERE (http://www.wegeners-granulomatosis.com/forum/general-wg-chat/3378-warning-extreme-booger-pictures-ahead-not-safe-lunch.html) for a complete discussion (with photos) of extreme boogers! :crying: LOL!

[MikeG-2012]

Hi Lauren, Some of the folks on here use a special WaterPik to get deeper into their sinuses. Perhaps one of them will chime in with more info.

Chime!

(http://www.sinupulse.com/index.php?p=3_1nf)I started with this one. (http://www.sinupulse.com/index.php?p=3_1nf)

Then I found the tips (http://www.sinupulse.com/index.php?p=3_3) from above fit this style of WaterPik (https://www.walmart.com/ip/Waterpik-Classic-Water-Flosser/9605629). This is about $30.00 less expensive than the sinupulse elite.

The switch on the WaterPik is less likely to get wet pouring from a pitcher into the basin. Made pretty sparks and smoke one day when I poured water on the round switch on the front of the sinupulse machine. OOPS! If I were ever to buy another one, I'd cover the knob with saran wrap.

[LaurenGoodwin]

Thanks everyone! is there anyone on here who has made it through the horrible crusts and now don't have that problem anymore?

[annekat]

Mine doesn't crust much at all anymore, but there is still mucus buildup that needs to come out, though it is softer and more easily removed. It still sometimes takes me multiple times to get it loose, but there's no pain. Unfortunately, WG has caused extensive erosion and destruction to the bony structures of my sinuses and nasal cavity... The upside is there is less mucus and fewer places for it to become trapped and harbor bacteria, and thus my ENT has said I will never have sinus infections again!

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[Alias]

Yes, Lauren. Ear and nose/sinus problems were my main presenting problems when I first became sick. I am in remission (but still on maintenance meds) and at this point crusting is minimal or absent most of the time, and very manageable. Like you, one side is worse than the other when I do have problems, I guess because of more scarring/narrowing on that side. The crusting in my early months of illness was horrible, and actually the pain I experienced in my nose and sinuses was some of the worst pain I've ever experienced, because it was just so unrelenting and exhausting. I hope you and your docs get a good program going to get your symptoms under control.

[LaurenGoodwin]

thats awesome to hear! yes this is the worse pain I've ever felt before. what medications were you on that helped you go into remission? and was there anything extra you did to your nose to help with the crust. or was it just rinsing? and did you ever have a rhinoplasty done when you hit remission? my bacteria is really only in my cheek sinus. but the crusting was extremely bad. its getting better but that means it went from terrible to bad ha.

[LaurenGoodwin]

is it absolutely disgusting to share pictures in my profile of some of the pictures i took of crust that comes out of my nose during debridements? ha

[Alias]

I escaped saddle nose, I guess because I was diagnosed relatively quickly. During the first year there was some discussion of surgery to open up the scarred areas, putting stents in there, etc., but ultimately the doc said the benefit would probably be minimal.

I was on a standard program of prednisone, followed by and combined with methotrexate, eventually tapering the prednisone to nothing over the course of many months. Rinsing with Budesonide to combat inflammation, and with Bactroban, were very effective, and I still rinse fairly regularly. I think just the passage of time has helped a lot too, i.e. since I have not had any active disease in a while my nose has had a chance to heal, even though there is some permanent damage and I have fluctuations in ear/nose symptoms, as well as minor side effects from medications. In my case, methotrexate was effective in bringing about remission, and I've had no serious flares, so I know I'm lucky.

There are many ups and downs with this, as you know, so hang in there.

[LaurenGoodwin]

oh wow your so lucky you didn't get saddle nose! I'm excited to know you went in remission with methotextrate i feel like not to many patients are on that. I'm on 20mg methotextrate and 2.5mg prednisone. so I'm finally down on prednisone. i take my blood tests this week so I'm anxious to see my results bc its been since november! I've been feeling really good other than being exhausted I've been trying to stay active i only don't feel good when i have a lot of bacteria in my nose and i can feel when its in there. how long did it take of treatment before you hit remission?

[Alysia]

Welcome to the forum Lauren.
If I understand correctly you are dealing with 2 different issues: the staph that they have found in the culture and wg. That staph is something like mrsa, if I am not wrong, and you must get a decent antibiotic treatment for it. Try to find an infectious diseases dr.
As for wg, ditto for what all the others above wrote.
I think that when your nose's "productions" are bloody, its more about wg. Other colors might be the infection.
We had that great thread to compare what we got out of our noses: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/3378-warning-extreme-booger-pictures-ahead-not-safe-lunch.html
I had bloody noses plus crusts etc. For about 4 and half years. My nose became saddle. Only rtx stopped it. No more bloody noses now. Although sometimes I think that there was nothing left there to create "productions"...

[drz]

is it absolutely disgusting to share pictures in my profile of some of the pictures i took of crust that comes out of my nose during debridements? ha

There is an older thread somewhere here filled with some graphic pix of trophy boogers so you could find that and add to it.

Bloody crusts were one on my first symptoms of Wegs. I saw ENT doctor for years for this but got no help from them. It only got better after getting Wegs diagnosed and treated. If I rinse daily, sometimes more, I generally have no bloody crusting anymore and rarely have fresh blood in the the rinses. When it does show up I use some Flonase nasal spray for a few days and it seems to heal up or disappear.

I use the SinusePulse machine most of the time since it can adjust the flow pressure but I often also use the squeeze bottle for a quick rinse too. The Sinus Pulse is the second generation rinse machine that was an improved version of the original Water Pik rinse machine.

I think it is helpful to get rid of the mucous crusts or clogs before they dry on too hard and then cause bleeding when they are dislodged. Some times this can require a lot of rinsing to dissolve them or loosen them enough to wash them out. Other wise if they are picked off or blown out when dry they can cause bleeding that may result in bloody crusts. I recently had a bloody nose when I blew my nose too hard and this happened to me.

Alkalol nasal rinse can also be useful for nasal rinsing and yields a nice cool refreshing feeling. They also claim it can help by dissolving mucous and reducing irritation to help reduce congestion. It is available at most drug stores or for sale on the internet.

[annekat]

is it absolutely disgusting to share pictures in my profile of some of the pictures i took of crust that comes out of my nose during debridements? ha
People have done it, there is a whole thread on it that I think someone shared the link to. You could add to that or start your own. Just include a warning so no one will have to look at the pics who doesn't want to. I already know what the crap looks like, so didn't look at that thread, but I heard there were some doozies.

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[LaurenGoodwin]

I have been tested for MRSA and it came back negative. that was actually the first test i ever did bc i didn't know what was going on with me. I have also gone to a infectious disease doctor and he sent me back to my ENT bc there was nothing really out of the "ordinary" the bacteria in my nose is staph which is a normal bacteria that grows in your nose. my problem is that i have an overgrowth of it. as in it grows really quickly. the doctor said the inflammation is causing it to do that? and once the inflammation goes down so will the bacteria?

haha thanks guys i might just have to check out that page to see if theres looks like mine.

I'm starting with my rinses at night and flonase so it should be better.