Changing irrigation tools?

[Hannah]

My Wegener's is limited to my nose and vocal cords, with some redness appearing in my eye during a flare. My nose collapsed last year and I have no septum any more. I have been irrigating with a NeilMed squeeze bottle since sinus symptoms began in 2014.

I had an ENT appointment Monday in which the ENT and I disagreed about the progress of my nose. I still feel like there isn't enough improvement with the crusting in my nose and drainage into my throat, but he think it looks better. As I think about it, I feel like the squeeze bottle doesn't reach certain areas inside my nose. I have a gaping hole between my nostrils, and I feel like the squeeze bottle doesn't reach the top edges or the lower front parts of my nose. When these build up, I'm more likely to try to use my fingers to get them, which increases risk for infection. I didn't think about this until after the appointment, so I didn't get to discuss it with my ENT.

Did any of you change your tool for irrigation as your nasal structure changed? What is best for getting those hard to reach crusts?

Thanks!

[drz]

My Wegener's is limited to my nose and vocal cords, with some redness appearing in my eye during a flare. My nose collapsed last year and I have no septum any more. I have been irrigating with a NeilMed squeeze bottle since sinus symptoms began in 2014.

I had an ENT appointment Monday in which the ENT and I disagreed about the progress of my nose. I still feel like there isn't enough improvement with the crusting in my nose and drainage into my throat, but he think it looks better. As I think about it, I feel like the squeeze bottle doesn't reach certain areas inside my nose. I have a gaping hole between my nostrils, and I feel like the squeeze bottle doesn't reach the top edges or the lower front parts of my nose. When these build up, I'm more likely to try to use my fingers to get them, which increases risk for infection. I didn't think about this until after the appointment, so I didn't get to discuss it with my ENT.

Did any of you change your tool for irrigation as your nasal structure changed? What is best for getting those hard to reach crusts?

Thanks!

The machines like Sinus Pulse (refined by former WaterPik staff) have more volume than the squeeze bottles. The bottles can provide more force for a smaller amount of rinse. I use the machines at home and the bottles when I travel away from from home. Moving your head around allows the rinse to reach different areas of the sinuses and you may need to rinse several times if you have a lot of stuff to dislodge and rinse out. You can also use additives like Alkolol to help clean the sinuses or increase the salt concentration in the rinse. Flonase (steroid) nasal spray or Neil Med Nasal gel sprays can also help heal up bloody crust areas.

Once you attain remission from active GPA the crusts will also usually heal up with regular and frequent rinsing.

[Alysia]

Hi Hannah,

I dont do nose irrigation. No idea why, but when I tried, the water went to my ears and it felt like hell.

I had nose bleeding & crusting and have developed saddle nose from 2008 until 2013. The only thing that stopped it was when I started rtx.

I think that your nose issues means that your wg is still active or smoldering and that the treatment that you get for it is not enough.
What meds for wg are you taking ?

[me2]

My most recent change in irrigation is to get a sinus culture to identify possible infection. I seem to have had infection along with the weg crusting more than I thought. Then get an antibiotic powder to mix with the sinus saline.
I use two Neilmed bottles. The first bottle I rinse with just the Neilmed solution. Take your time. Going slower is what will get the harder to get to crusts. Then with the second bottle mix up the saline and the antibiotic powder. I also add budesonide steroid to the second bottle to calm inflammation . After just a few days I usually get some improvement from this program. Rinsing frequently and thoroughly helps.

[Lilly]

Hi Hannah, I have had wegeners for 27 years. I have "limited wegeners", and my sinuses were hit hard. They have always been a real problem. I even had 2 "sinus scraping surgeries" after having the disease for 15 years. I have used many different ways to keep my nose clean over the years as my sinuses have changed. I have used NeilMed also, and it worked well for me. But now, my sinuses are pretty much gone. I also have the hole in my septum, and its more difficult to clean because of the way my sinuses are so "open" now. The way I clean my sinus cavity now (I still have crusties and buildup will block my breathing) is by using "Simply Saline" made by Arm & Hammer...its a nasal mist. The mist goes far, and completely moistens the inside of my nose. I will mist my nose for about an hour or so, just getting everything softened up. Then I use Q-tips to gently remove the crusties. I usually see my EENT every 2 or 3 months, and he uses an instrument to clean out the very back of my nose where I cant reach. I wish you luck! Blessings...

[Alias]

I follow a program similar to me2. Normally I just rinse with saline using the NeilMed bottle. When I get more serious blockages or fear I have an infection developing I break out the antibiotic and the budeseonide. In my case the antibiotic is Bactroban. They are both prescription meds, and I believe this use for them is "off label", meaning it is not what they were designed for, but they are effective. It's not clear if you have active disease causing you problems, or if it's "just" damage from what you've already experienced. In my case it's the latter.

[annekat]

My Wegener's is limited to my nose and vocal cords, with some redness appearing in my eye during a flare. My nose collapsed last year and I have no septum any more. I have been irrigating with a NeilMed squeeze bottle since sinus symptoms began in 2014.

I had an ENT appointment Monday in which the ENT and I disagreed about the progress of my nose. I still feel like there isn't enough improvement with the crusting in my nose and drainage into my throat, but he think it looks better. As I think about it, I feel like the squeeze bottle doesn't reach certain areas inside my nose. I have a gaping hole between my nostrils, and I feel like the squeeze bottle doesn't reach the top edges or the lower front parts of my nose. When these build up, I'm more likely to try to use my fingers to get them, which increases risk for infection. I didn't think about this until after the appointment, so I didn't get to discuss it with my ENT.

Did any of you change your tool for irrigation as your nasal structure changed? What is best for getting those hard to reach crusts?

Thanks!I guess everyone's nose is different but mine is collapsed, too, and in fact, most of the bony structures of my sinuses and inside my nasal cavity have eroded away. Still, the saddle nose is the only thing externally visible. Now there are much fewer places for mucus to be produced and collect and the main one is around the top of my nose, and the nasal rinses get that out pretty effectively. There isn't any real crusting in that area, just globs of thickened mucus, smaller than before. There is some small crusting near the openings of my nostrils that is hard to dislodge, but I never felt like the nasal rinses got at that area much anyway. And I still do get the dripping from the back if my nose into my throat, with the resulting coughing. I find that NAC, or N-Acetyl-L-Cysteine, an amino acid taken as a supplement, thins the mucus and helps a lot with dislodging it and getting it out of there, and makes it easier to cough up out of the throat.

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[Lilly]

Hi Anne, I have written down the amino acid you take as a supplement...I think you and I have about the same amount of destruction in our sinuses, by the way you describe yours now. I could definitely use something to help the mucous that builds up in my throat and causes me to cough all the time. And I was wondering, unless I am on a high dose of steroids (during a flare) I tend to have a lot of mucous, especially in my ears. Do you have that problem? And if so, does that amino acid help that? Thanks Anne Blessings and love

[MikeG-2012]

My ENT and I worked together with the wands from the sinu-pulse machine to learn to get one of the wands, without the tip, into my nose safely and get the water jet where the crusts are. He showed me the proper way to insert the wand and it has worked great to keep my nose clear.

One technique that I found, and that my ENT agreed was a great one, is to run antibiotic with the waterpik on the slowest setting while pinching the opposite nostril closed. When the water starts to tickle the top of the palate, stop the flow of water and let it sit in the nose as long as possible. (It is not really that hard after a while.) This method gets the solution into all the dark, damp nooks and crannies of the nose and sinuses, where the infection hides and breeds the most.

Switching to the sinu-pulse and waterpik type devices has been the single best thing I have ever done for my nose and sinuses. I got through a sinus only flare-up in 2013, where my sinuses "look like hamburger" (ENT's words) by diligently rinsing. At one point, I was running almost 6-9 liters of saline through my nose every day. I would mix the saline in one of these 1 gallon pitchers (https://www.pamperedchef.com/shop/Outdoor/Outdoor+Entertaining/Family-Size+Quick-Stir+Pitcher/2277). I used those useless little storage containers that come with big sets to pre-mix slat and baking soda mixture for one gallon at a time. During the worst of this time, I was at the ENT weekly to have crusts pulled out.

Today, I am on RTX, and my nose has recovered quite a bit. I have normal linings in my ethmoid sinuses, and my maxillary sinuses are better, but scarred. I still have minor crusting and rinse at least 2-3 times a week.

Good luck with your battle!!

[Lilly]

Hi Mike, that is such a great post! Knowing that patients like you are doing things like this, and saving their sinuses, is great news to me. I hope that your post will encourage many new wegeners patients, and also, those who still have some of their sinuses intact. I did a lot of rinsing, and irrigating, for many years, but it never stopped the disease from slowly eroding my sinus tissues away. Once they are gone, there is no way to get them back! I am so happy for you, and that your doctor has helped you with this way of treatment. Sounds like you are a very dedicated patient also, who wants to be in control of this disease, and not the other way around!! Blessings,

[annekat]

Hi Anne, I have written down the amino acid you take as a supplement...I think you and I have about the same amount of destruction in our sinuses, by the way you describe yours now. I could definitely use something to help the mucous that builds up in my throat and causes me to cough all the time. And I was wondering, unless I am on a high dose of steroids (during a flare) I tend to have a lot of mucous, especially in my ears. Do you have that problem? And if so, does that amino acid help that? Thanks Anne Blessings and loveHi, Lilly. I have various problems in my ears but never felt like there was a buildup of mucus in them. Are your eustachian tubes functioning enough to drain it out that way? If so, I think the NAC would help with thinning the mucus so it would drain. I used to use Mucinex or liquid guaifenisen to thin mucus but someone on the forum suggested NAC and I think it works much better if taken regularly. It may take a week or two to notice a difference. I get mine at the Vitamin Shoppe or Super Supplements, and it can be found online. I have 600mg capsules and take one twice a day, morning and night. The bottle will say other things about what it is good for, but I know others who can attest to its mucus thinning ability. The good thing about having no sinuses is, according to my ENT, we are no longer subject to sinus infections! Best to you!

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[Lilly]

Hi Anne, Well, my ears have been pretty easy to maintain in the last 5 years, I would just go to my EENT when I had an ear infection, or pressure in my ears, and he would suction out the infection and put a tube in. That was working great, until the Christmas of 2016, when my tube was stuck sideways in my ear, and I had a quick out patient surgery where my EENT removed the stuck tube and tried to suction out the "fluid"....but he said it was like glue...very thick. This worried me, and I could tell it worried him too, because he acted surprised about it. But I had my tube in my left ear, and also replaced the one in the right. This was not a happy ending, as almost immediately (within a week) my ears felt like I had cotton in them. If I slept on my right side, I would wake with my right ear pounding, and clogged up. During the day, it would go back and forth. I went back to my EENT, and my tube he put in was out in the left ear, and there was a hole left. Nothing else he could do. I asked him if he could suction out whatever was blocking my hearing and causing me pain, but he said there was nothing there. So I guess whatever I am feeling in my ears is not in the middle ear. I am going crazy because my hearing is so effected by this, and I have constant ringing and white noise and a roaring sounds in both ears. I was just about to try mucinex, to see if I can get some relief, then I saw what you wrote. I may get some at the Health Hut, a Health food store my Mom and sisters and I get all our healthy items from. Sorry so long, I am really having a hard time thinking straight. I'm sure I will get used to it if I have to, but having noise in your ears constantly, and trying to focus on anything is difficult for me. My Mom and I are working on trying some things that may help. Thank you Anne, Oh, BTW, I found your pottery on Instagram. You are very talented!! I Love your style....Blessings and Love,

[annekat]

Hi Anne, Well, my ears have been pretty easy to maintain in the last 5 years, I would just go to my EENT when I had an ear infection, or pressure in my ears, and he would suction out the infection and put a tube in. That was working great, until the Christmas of 2016, when my tube was stuck sideways in my ear, and I had a quick out patient surgery where my EENT removed the stuck tube and tried to suction out the "fluid"....but he said it was like glue...very thick. This worried me, and I could tell it worried him too, because he acted surprised about it. But I had my tube in my left ear, and also replaced the one in the right. This was not a happy ending, as almost immediately (within a week) my ears felt like I had cotton in them. If I slept on my right side, I would wake with my right ear pounding, and clogged up. During the day, it would go back and forth. I went back to my EENT, and my tube he put in was out in the left ear, and there was a hole left. Nothing else he could do. I asked him if he could suction out whatever was blocking my hearing and causing me pain, but he said there was nothing there. So I guess whatever I am feeling in my ears is not in the middle ear. I am going crazy because my hearing is so effected by this, and I have constant ringing and white noise and a roaring sounds in both ears. I was just about to try mucinex, to see if I can get some relief, then I saw what you wrote. I may get some at the Health Hut, a Health food store my Mom and sisters and I get all our healthy items from. Sorry so long, I am really having a hard time thinking straight. I'm sure I will get used to it if I have to, but having noise in your ears constantly, and trying to focus on anything is difficult for me. My Mom and I are working on trying some things that may help. Thank you Anne, Oh, BTW, I found your pottery on Instagram. You are very talented!! I Love your style....Blessings and Love,Don't know if NAC will help your ears, but it's worth a try. I think I have had that thick gluey stuff, too, but didn't think of it as mucus. So many things have happened with my ears, I can't remember. One if my ear drums is eroded mostly away and the little bones behind the drum are also eroded. Hearing in that ear is now too dead for a standard hearing aid, though the other ear is hearing pretty well with an aid. I also get dizziness and vertigo, a balance problem in the middle ear, though vision issues and messed up feet are also contributing. Sometimes I get roaring or other tinnitus and pressure in my ears and then it goes away. Sometimes my ears get very sensitive to sound, though I'm half deaf, things sound louder. Doc thinks I may have Menieres disease, which is hard to dx. I have discovered my ears are very sensitive to atmospheric pressure changes, as in weather changes, and Doc confirmed that some people are. I've met several people with this issue, non Weggies, who get stuffy and weird ears at these times. I take a sedative for the potential vertigo and find that pseudoephedrine also helps with that and with the weather changes. A lot to digest, and we've diverged from the original post! I know there are forums for various ear problems and pressure changes. I hope you can get some relief. I do remember looking up glue ear on the web and you might try that, and I think it's been mentioned on this forum, too. Good luck!

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[MikeG-2012]

I am so happy for you, and that your doctor has helped you with this way of treatment. Sounds like you are a very dedicated patient also, who wants to be in control of this disease, and not the other way around!! Blessings,

Yea, my ENT is a rock star! I have to be in control of this stupid disease, its the only choice I have if I want to keep my nose as good as it is!!

[Lilly]

Hi Anne, well you gave me some great information!! I am so sorry about your ears. Its so difficult with wegeners, when you lose something, its gone forever!! The ears are SO amazing! They are extremely delicate, and the way we are able to hear, with vibrations and the tiny cochlear hairs, its just amazing to me. But they are tough at the same time, and will take years of putting tubes in them. The way you explain the pressure you get in your ears, and the way it goes back and forth, that is how mine does now. I am going to look for the ear / glue ear, on the forum. My Mom has bought a device that is supposed to help you hear loud noise, like talking and TV, etc. and block out the roaring noise. I go over there tomorrow, Ill let you know if it works. I also have to take meds for nausea sometimes, because of my ears, I have vertigo, and I get off balance very easily. It doesn't help that I have a bunion on one foot that is so bad, the doctor says he will have to break the bone, and put my foot back together with a pin and screws. My other foot had issues also, so I wear a custom made brace to help it not hurt so bad when I am on it. So, if I have the bunion surgery, I will have to depend on the other foot for like 6 weeks!! Not sure I can do that. But my bunion foot hurts and bothers me and even wakes me up at night. My eyes were effected pretty bad from scar tissue clogging my tear ducts. For years I have had a little plastic tube threaded through the tiny ducts in the corner of my eyes. This let my eyes drain, like they are supposed to. When the tube fell out, tears would stream down my face. Then they got so bad that the tiny plastic tube didn't work, so I got a glass tube, special made for me. The doctor set it in the corner of my eye, to drain into my sinus. I had a couple sets made, because sometimes they would fall out, or I would swallow them without knowing. But now, there is no sinus tissue left for the glass tubes to rest on, so they just fall out. So I now have to live with tears in my eyes always. (another off the subject issue-lol) I certainly hope you don't have Meniers disease. So many weggies have other autoimmune illnesses....it doesn't seem fair. Well, Anne I cant thank you enough for chatting with me and giving me some great information. Stay Strong!! Blessings and Love my Friend,

[annekat]

Hi Anne, well you gave me some great information!! I am so sorry about your ears. Its so difficult with wegeners, when you lose something, its gone forever!! The ears are SO amazing! They are extremely delicate, and the way we are able to hear, with vibrations and the tiny cochlear hairs, its just amazing to me. But they are tough at the same time, and will take years of putting tubes in them. The way you explain the pressure you get in your ears, and the way it goes back and forth, that is how mine does now. I am going to look for the ear / glue ear, on the forum. My Mom has bought a device that is supposed to help you hear loud noise, like talking and TV, etc. and block out the roaring noise. I go over there tomorrow, Ill let you know if it works. I also have to take meds for nausea sometimes, because of my ears, I have vertigo, and I get off balance very easily. It doesn't help that I have a bunion on one foot that is so bad, the doctor says he will have to break the bone, and put my foot back together with a pin and screws. My other foot had issues also, so I wear a custom made brace to help it not hurt so bad when I am on it. So, if I have the bunion surgery, I will have to depend on the other foot for like 6 weeks!! Not sure I can do that. But my bunion foot hurts and bothers me and even wakes me up at night. My eyes were effected pretty bad from scar tissue clogging my tear ducts. For years I have had a little plastic tube threaded through the tiny ducts in the corner of my eyes. This let my eyes drain, like they are supposed to. When the tube fell out, tears would stream down my face. Then they got so bad that the tiny plastic tube didn't work, so I got a glass tube, special made for me. The doctor set it in the corner of my eye, to drain into my sinus. I had a couple sets made, because sometimes they would fall out, or I would swallow them without knowing. But now, there is no sinus tissue left for the glass tubes to rest on, so they just fall out. So I now have to live with tears in my eyes always. (another off the subject issue-lol) I certainly hope you don't have Meniers disease. So many weggies have other autoimmune illnesses....it doesn't seem fair. Well, Anne I cant thank you enough for chatting with me and giving me some great information. Stay Strong!! Blessings and Love my Friend,Thanks, Lilly. I also have bunions and feel they contribute to balance problems. Menieres disease is not autoimmune, it is just a name for a syndrome and they aren't sure what causes it. It can go away for years and then come back. But vertigo can be caused by so many things! I have talked to several non-Weggies who have it too and some have had much worse episodes than mine, lasting for days or weeks. I also get the watery eyes but not all the time. So we do have a lot in common. If you'd ever like to PM me about any of it, either here or on Facebook, you are welcome to. Love to you, too!!!



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[John S]

I use the Navage system sometimes and the Neil - Med every day. No major crusts since October till I ha a few this past week. I think that was corresponding with a cold and congestion that I've been dealing with.

[Masha]

My ENT and I worked together with the wands from the sinu-pulse machine to learn to get one of the wands, without the tip, into my nose safely and get the water jet where the crusts are. He showed me the proper way to insert the wand and it has worked great to keep my nose clear.

One technique that I found, and that my ENT agreed was a great one, is to run antibiotic with the waterpik on the slowest setting while pinching the opposite nostril closed. When the water starts to tickle the top of the palate, stop the flow of water and let it sit in the nose as long as possible. (It is not really that hard after a while.) This method gets the solution into all the dark, damp nooks and crannies of the nose and sinuses, where the infection hides and breeds the most.

Switching to the sinu-pulse and waterpik type devices has been the single best thing I have ever done for my nose and sinuses. I got through a sinus only flare-up in 2013, where my sinuses "look like hamburger" (ENT's words) by diligently rinsing. At one point, I was running almost 6-9 liters of saline through my nose every day. I would mix the saline in one of these 1 gallon pitchers (https://www.pamperedchef.com/shop/Outdoor/Outdoor+Entertaining/Family-Size+Quick-Stir+Pitcher/2277). I used those useless little storage containers that come with big sets to pre-mix slat and baking soda mixture for one gallon at a time. During the worst of this time, I was at the ENT weekly to have crusts pulled out.

Today, I am on RTX, and my nose has recovered quite a bit. I have normal linings in my ethmoid sinuses, and my maxillary sinuses are better, but scarred. I still have minor crusting and rinse at least 2-3 times a week.

Good luck with your battle!!

Great Post. You and Lilly and the others have answered some of my questions. After reading the posts I ordered a Sinu Pulse. The wegs put a hole in my nose. Thinking it was the result of a car accident I have had almost a dozen sinus surgeries. How different my life would have been if I was properly diagnosed years ago. I lost sense of smell 45 years ago in accident. I can’t even imagine life without sinus pain. Sometimes it feels like an elephant is sitting on the right side of my face. The ENT who diagnosed wegs last year has had me on an oral antibiotic that is working. Two weeks off then another month of Rituxan infusions. The docs seem to think they can make me better. But I am skeptical. Where do you get the medicine you put in the rinse? On 12.5 mg Prednisone- I hate it. I’ve been on more and less. Less and I get a flare. Does the number of infusions and remission differ with everyone? Rheumatologist said if next Rituxan infusions don’t work we are going to Cytoxan infusions. Since I am sinus limited does this sound too aggressive? So many questions and so many of you are at a far more advanced stage than I, that I feel guilty even asking questions. Bless y’all. Masha

[drz]

The med I was given for use in the sinus rinse was made by adding Micropuricin to a liquid where it is pulverized and then frozen and then thawed as you use it. It was very expensive and had to be custom made at special facility. It took so long for me to get it that by then I had the infections under control and never had to use it.

Some times people use other more common additives to hep reduce infections in the sinuses which your doctors could advise you on if they think it will help you.

[annekat]

Great Post. You and Lilly and the others have answered some of my questions. After reading the posts I ordered a Sinu Pulse. The wegs put a hole in my nose. Thinking it was the result of a car accident I have had almost a dozen sinus surgeries. How different my life would have been if I was properly diagnosed years ago. I lost sense of smell 45 years ago in accident. I can’t even imagine life without sinus pain. Sometimes it feels like an elephant is sitting on the right side of my face. The ENT who diagnosed wegs last year has had me on an oral antibiotic that is working. Two weeks off then another month of Rituxan infusions. The docs seem to think they can make me better. But I am skeptical. Where do you get the medicine you put in the rinse? On 12.5 mg Prednisone- I hate it. I’ve been on more and less. Less and I get a flare. Does the number of infusions and remission differ with everyone? Rheumatologist said if next Rituxan infusions don’t work we are going to Cytoxan infusions. Since I am sinus limited does this sound too aggressive? So many questions and so many of you are at a far more advanced stage than I, that I feel guilty even asking questions. Bless y’all. MashaIf your doc thinks RTX isn't working well and wants to try Cytoxan, I would think it worth a try. Some even use them together. But with your WG being limited to sinus at present, maybe he could go with a fairly low dose and/or for a shorter length of time. When I was dx'd, RTX was just starting to be approved and used for Wegs. I was started on CTX at a slightly lower dose than my body weight would suggest, and it cleared up my sinus and lung issues very well, to where I've only had a couple of moderate flares in 7 years and not for the last 4 or 5. I made sure to drink lots of water and only wish I hadn't been on it so long.... 8 months, when 4-6 should have been the top. Now on methotrexate, which is maintaining a low level of WG activity, along with 7.5mg prednisone. I'm glad not to be on RTX as so many seem to need it indefinitely and it is so expensive and disruptive to daily life for many. We are all different, though, and I hope you find a solution... sometimes we just have to try something and see if it works. Good luck!

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[MikeG-2012]

The med I was given for use in the sinus rinse was made by adding Micropuricin to a liquid where it is pulverized and then frozen and then thawed as you use it. It was very expensive and had to be custom made at special facility. It took so long for me to get it that by then I had the infections under control and never had to use it..


My ENT and I have a way around paying for the compounding of drugs with saline for nasal rinses. He prescribes both items (sterile saline bottles and antibiotic) separately and insurance pays for it. I then mix it myself, per the doc's recipe, as needed. Mixing it at home also extends the shelf life so I do not have to freeze or clog up my fridge with all the bottles.

Hope this helps some of you.

[MikeG-2012]

Great Post. You and Lilly and the others have answered some of my questions. After reading the posts I ordered a Sinu Pulse.

You are welcome to ask me anything in regards to nasal rinsing. I have done some radical things with the waterpik type devices and it has saved my nose from the wegs crusting.


I can’t even imagine life without sinus pain. Sometimes it feels like an elephant is sitting on the right side of my face. The ENT who diagnosed wegs last year has had me on an oral antibiotic that is working. Two weeks off then another month of Rituxan infusions. The docs seem to think they can make me better. But I am skeptical.

I had really serious sinus issues for about 6 years before diagnosis. My nose is the best it has been in 12 years. I attribute it to RTX, and insistently and relentlessly rinsing out the crusts. It will take time, so hang in there. It should get better.


Where do you get the medicine you put in the rinse? On 12.5 mg Prednisone- I hate it. I’ve been on more and less. Less and I get a flare.

(ALL OF THESE WERE APPROVED BY MY ENT DOCTOR) I use Alkolol Solution that is available at pharmacies over the counter. Try not to use it straight as advertised. I've also used Johnson's Baby Shampoo to help with the irritation. As far as prescriptions go, I have used budesonide (steroid used in nebulizer machines), Bactroban ointment, and gentamicin--all mixed in sterile saline bottles. I've also been on a host of oral antibiotics. What used really depends on what kind of infection you are fighting at the root of the sinus flare-ups. Have your ENT do a culture to determine what the infection is before he/she prescribes something that your infection is probably resistant. If you use up all the types of antibiotics on a "let's see how this one works" basis, you may become resistant to it and need it later. I won't take anything unless we KNOW that it will work on the infection. Lately, Doxycycline and Bactroban have been the best to treat my infections.


Does the number of infusions and remission differ with everyone? Rheumatologist said if next Rituxan infusions don’t work we are going to Cytoxan infusions.

Yep, treatment will vary for each of us. Remember, you are writing your own book of your unique disease. Treatment will be yours and unique to you. I hope you do not have to go the route of Cytoxin. That has far more side effects than the Rituxan.


Since I am sinus limited does this sound too aggressive? So many questions and so many of you are at a far more advanced stage than I, that I feel guilty even asking questions. Bless y’all. Masha

What you have said does not sound too aggressive. I've been through exactly what you are doing. Pred sucks all around, but eventually, let's hope you can get off of it. It took me almost 3 years, and I have been pred-free since 2015!!

Never be embarrassed to ask questions--with us or your doctors. YOU need to be your own advocate and learn as much about this disease as you want to know. Many of us are short-term and long-term veterans of this awful disease, and we are more than willing to share our experiences with you--good and bad.

Hang in there, the tunnel may look closed, but there is light past the construction zone!!!

[Alysia]

Great Post. You and Lilly and the others have answered some of my questions. After reading the posts I ordered a Sinu Pulse. The wegs put a hole in my nose. Thinking it was the result of a car accident I have had almost a dozen sinus surgeries. How different my life would have been if I was properly diagnosed years ago. I lost sense of smell 45 years ago in accident. I can’t even imagine life without sinus pain. Sometimes it feels like an elephant is sitting on the right side of my face. The ENT who diagnosed wegs last year has had me on an oral antibiotic that is working. Two weeks off then another month of Rituxan infusions. The docs seem to think they can make me better. But I am skeptical. Where do you get the medicine you put in the rinse? On 12.5 mg Prednisone- I hate it. I’ve been on more and less. Less and I get a flare. Does the number of infusions and remission differ with everyone? Rheumatologist said if next Rituxan infusions don’t work we are going to Cytoxan infusions. Since I am sinus limited does this sound too aggressive? So many questions and so many of you are at a far more advanced stage than I, that I feel guilty even asking questions. Bless y’all. Masha

Masha, It took me 2 rounds of rtx, 6 months between them, so that only after 9 months since the first rtx IV - my nose started to get better. Other wg symptoms started to become better after 3 months. My nose was the most stubborn. Rtx can still work for you.

[Masha]

Love the Sinu-pulse. Neti is in garbage. Thanks for the heads up on diluting Alkolol. Saw ENT last week and he is on top of everything. Biopsies, cultures, ears, trachea. The last antibiotic was very strong, knocked my socks off. But I got thru two weeks without dangerous side effects. He said if it hits again, he will immediately try one more. After that, a scraping surgery. Let’s hope between the irrigation and four more Rituxan infusions to start next week will keep the sinus infections at bay. Rheumatologist said I have had this for years. How many other people are walking around thinking they just have bad forever colds? Miracle I got through college, worked and raised family. Retirement makes it easier to deal with Wegeners. Tomorrow will be another major molar extraction. Anyone else experience teeth problems? Could Prednisone cause problems with teeth? I know Methotrexate did.
Thank y’all for your help and guidance. This site is such a big help.
Masha

[annekat]

Love the Sinu-pulse. Neti is in garbage. Thanks for the heads up on diluting Alkolol. Saw ENT last week and he is on top of everything. Biopsies, cultures, ears, trachea. The last antibiotic was very strong, knocked my socks off. But I got thru two weeks without dangerous side effects. He said if it hits again, he will immediately try one more. After that, a scraping surgery. Let’s hope between the irrigation and four more Rituxan infusions to start next week will keep the sinus infections at bay. Rheumatologist said I have had this for years. How many other people are walking around thinking they just have bad forever colds? Miracle I got through college, worked and raised family. Retirement makes it easier to deal with Wegeners. Tomorrow will be another major molar extraction. Anyone else experience teeth problems? Could Prednisone cause problems with teeth? I know Methotrexate did.
Thank y’all for your help and guidance. This site is such a big help.
MashaI went around for 2.5 years thinking I had recurrent sinus and ear infections and severe allergies. I do have allergies, I'll give them that, but not all that severe. The giant ear infection at the beginning should have been a clue, as I'd never been prone to ear infections at all, and I've heard the same from others. My delayed dx was not as long as some and probably yours. But it was long enough to develop a saddle nose, even though I was doing the nasal rinses. If Wegs hadn't eventually gone into my lungs, who knows how much longer they'd have taken to figure it out, except that the saddle nose happened right about then and was sort if a dead giveaway.

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[annekat]

I went around for 2.5 years thinking I had recurrent sinus and ear infections and severe allergies. I do have allergies, I'll give the that, but not all that severe. The giant ear infection at the beginning should have been a clue, as I'd never been prone to ear infections at all, and I've heard the same from others. My delayed dx was not as long as some and probably yours. But it was long enough to develop a saddle nose, even though I was doing the nasal rinses. If Wegs hadn't eventually gone into my lungs, who knows how much longer they'd have taken to figure it out, except that the saddle nose happened right about then and was sort if a dead giveaway.

Sent from my MotoE2(4G-LTE) using TapatalkAs for teeth problems, I had some but not as bad as some other people.. Molar extractions happened when I was on medium dose pred and Cytoxan. Now on Methotrexate. Dentist says there are some issues but nothing is falling out or painful, yet. They say dry mouth contributes to dental problems and our meds can contribute to that. Someone suggested ACT mouth rinse for dry mouth, and I got some.

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[drz]

I have had lots of dental work recently due to Wegs, diabetes, and the meds and dry mouth. I have had some crowns, root canals, infectons etc. Once I went to dentist thinking I had an infection and it turned out to be a sinus infection which he correctly diagnosed and treated. I was skeptical but he was right. Having a good dentist is important for us Weggies.

[Alias]

It's not just meds - - for me it's the chronic congestion that often causes me to have to breathe through my mouth at night. That is not a restful way to sleep, and yes the resulting dry mouth is concerning for dental health.

[MikeG-2012]

It's not just meds - - for me it's the chronic congestion that often causes me to have to breathe through my mouth at night. That is not a restful way to sleep, and yes the resulting dry mouth is concerning for dental health.

We just need to move you somewhere WARMER and MORE HUMID Tom!!! LOL!!