Help for crusty noses

[BookNut]

I know some of you suffer with this. i have been bothered lately because of my "chronic rhinosinusitis" (the latest diagnosis). Seems like I am always disappearing to the bathroom to (gross alert!) clear out my one blocked nostril. It has been driving me crazy. Today though it dawned on me to try the beeswax cream I bought at a craft fair last year. It worked WONDERS for my moderate excema last winter. Well...a little bit in the offending nostril did WONDERS for my poor sore nose. I am much more comfortable now....not to mention more socially acceptable now that I can give up my "nose-picking"!! Just thought this might help anyone with a similar problem.

I keep checking in on you guys. I go to a rhinologist on Monday. Specialist #10! 2 weeks ago I was such a mess I had to go see my asthma doctor who was shocked by my condition and put me on prednisone and a new nebulizer. So of course I am enough better now that the new doctor will probably think I am a hypochondriac. Oh well.

[Alysia]

Hi Jacquie,
I'm always happy to hear from you :thumbup:
thanks for your advice.
I must say that in my case, all the creams and rinses made me fell better at the beginning but then made things worse. so if I have to clean my nose I'm doing hot shower or going for a walk.

[mishb]

I am the same Alysia.

Every cream used and every spray used worked for about 1 or 2 weeks and then nothing.......just a clogged/clagged up nose again.
A steaming hot shower works wonders, not just for the nose but for the joints as well.

Jacquie, I still think you are one of us - all the same types of symptoms, but with out the wonderful sounding name :razz:

[pberggren1]

I use a waterpik twice a day to irrigate my nose. I also have a Niel-Med Squeeze bottle when traveling.

[whatthewhat]

The NeilMed squeeze bottles twice a day, until nothing more comes out, have made all the difference in the world for our daughter.

[BookNut]

Thanks to everyone. I also use a neil med, a personal steam humidifier/inhaler and hot showers. I have tried vaseline and lotions etc. Some relief, but VERY short acting. The beeswax so far is the only thing that lasts all day. I usually apply it twice a day, and it prevents my nose from drying out.

All of them do a better job then my allergy medicine...zyrtek...and mucinex. i plan to ask the doctor if I should try dropping them for awhile and see what happens.

Glad to hear from folks!

[annekat]

Nice to hear from you, Jacquie! i know there is a Burt's Bees brand of products in "health food" sections of grocery stores that might include a beeswax cream. Sounds worth a try. Otherwise, I do all the stuff mentioned above except for the Water Pik, which I'd like to try. I also get great results from inhaling steaming water from a bowl with herbs like peppermint or eucalyptus added and a towel over my head. Very relaxing, as well. Always nice to hear from our Honorary Weggie!

[Savva]

I use "dolphin" - otorhinolaryngologic individual device for washing. I use it 2 a day and after 1 year use my crust have gotten smaller. Sometimes I need it only once a day. Google it.

[annekat]

I use "dolphin" - otorhinolaryngologic individual device for washing. I use it 2 a day and after 1 year use my crust have gotten smaller. Sometimes I need it only once a day. Google it. I just googled it and it looks like the same type of system as the NeilMed Sinus Rinse that a lot of us use. Yes, this is a very important part of treating our sinus and nose issues with Wegs or sinusitis or even for people who just want to keep their nose clean and disease-free.

[pberggren1]

Jacquie, prob mucinex and your other allergy med is your problem. I know mucinex can have sort of a rebound effect where you will get more mucus after a while.

[annekat]

Jacquie, prob mucinex and your other allergy med is your problem. I know mucinex can have sort of a rebound effect where you will get more mucus after a while. I used Mucinex for a long time to sort of keep the mucus flowing, and to loosen up congestion in the sinuses. My ENT had started me on it for sinus issues way before WG dx. I think for a long time I felt it helped, but gradually became not sure, so stopped, and am now glad I did; one less thing to think about and buy. My congestion and mucus have not increased since then, and have in fact decreased along with other WG symptoms. As for Zyrtec, I've used it mainly during allergy seasons, and felt it helped. But my WG treating doc is not keen on me using either of them, or any inhalers, or anything but the Wegs drugs. I would still use them if I felt I needed them.

[BookNut]

Phil and Anne,

I forgot to ask the ENT I saw on Monday if I should discontinue the meds. I will stay put for awhile, and check at next visit. This is a new ENT. He did a much more thorough exam than the last one, using a camera to look inside my nose. He took a sample and tentatively plans to prescribe a "targeted" antibiotic. After that, he is recommending, but not pushing, sinus surgery to clear out the gunk. Nothing looks that terrible in the CT - but it was done in mid-July when I was feeling pretty good. Now I am just getting over the third serious flare in two years. It makes my asthma flare up (I never had asthma till two years ago), and makes me short of breath, and feel like I have a Mac truck on my chest. Knocks me totally out of commission for two weeks, and then it takes a month of so to get my full strength back again. I feel fatigued all the time - but way worse when I have a sinus fare. So....I guess surgery will be worth the risk if it improves my energy and ability to get things done. Thanks as always for the help!

[pberggren1]

What surgery are you talking about Jacquie?

[BookNut]

I didn't know there was more than one kind. It is the one where they go in through the nose, clear out gunk and/or polyps, and widen the passages so that drainage is improved. Kind of a roto-rooter procedure. In my case, I have a slightly deviated septum and some sort of thing they refer to as a "spur". All of that will be straigtened and some tissue or the entire spur removed. Not sure about that. I have a problem on both sides, but it is worse on the left side where the spur is located. That is as much as I know right now. I have an appt in a month to go over the results of the testing they did the other day, and to discuss surgery and possibly schedule the procedure.

[Alysia]

good luck in your surgery ! cross fingers to you.

[pberggren1]

Jacquie, can you breath through your nose okay once the crusts are out? If so I highly recommend not getting any surgery done on your nose. It can make the Wegs flare up again.

[BookNut]

Jacquie, can you breath through your nose okay once the crusts are out? If so I highly recommend not getting any surgery done on your nose. It can make the Wegs flare up again.

Well...two specialists now have decided I do NOT have wegeners. I just hang around the forum because I have grown fond of all you folks!

It appears to be a very stubborn case of chronic rhinosinusitis. The constant post-nasal drip is thought to be the cause ofmy wheeze and cough which never go away. I'd just be content to live with it as is...except that several times a year now it makes me so ill that I have to use a nebulizer 4x per day, my wheezing gets considerably worse than my everyday wheezing, and the slightest effort makes me very short of breath, with a nasty "there is an elephant sitting on my chest" feeling. I am useless to everyone when I am like that. My hope is that, with surgery, I might avoid these downturns, and that I might be able to NOT blow my nose for an hour or so at a time. Right now, I have to blow my nose every 5-10 minutes.

Would love to read people's experiences with sinus surgery. Did you have it? Did it cause problems? I sure don't want to be worse!

[pberggren1]

That tough breathing you describe prob has nothing to do with your nose hun. Have you had a biopsy of your nose or ANCA test done to determine if you have Wegs? The breathing most likely has something to do with your lungs. Do you go on antibiotics when this happens? What nebules do you use at that time? What specialty are these specialists that say you don't have Wegs? Are you at a big center?

[BookNut]

That tough breathing you describe prob has nothing to do with your nose hun. Have you had a biopsy of your nose or ANCA test done to determine if you have Wegs? The breathing most likely has something to do with your lungs. Do you go on antibiotics when this happens? What nebules do you use at that time? What specialty are these specialists that say you don't have Wegs? Are you at a big center?


I NEVER had a lung problem till the sinus problem started. I had bronchitis with a cough and no wheezing every Fall for 15 years or so. Three weeks, antibiotics and done. That all changed two years ago. I got what I thought was my yearly bout of bronchitis a little earlier than usual - but it came with wheezing, post nasal drip and constant nose blowing, all new symptoms. At the beginning, I'd got antibiotics. Have had quite a number of them, including Levaquin. Sometimes it helped a little. But the wheezing NEVER goes away. Not even for a minute. Fortunately, it is only when I breathe out deeply. And I have a persistent cough that never goes away.


I have had rounds of pred which clears up my head quite a bit - but never completely. And the mucous runs more and more daily. I live near Rochester, NY which has wonderful health facilities. I was sent to one pulmonologist, but he was not taking patients so I got stuck with his colleague who was a complete idiot. He saw me a few times and declared me healed. He did one good thing. He referred me to an asthma/allergy/imuunology specialist who is WONDERFUL. She is a bull dog and pesters my other specialists to keep investigating. She referred me to a very highly regarded pulmonologist who I really like. That was right after my favorite doctor had referred me to an immnologist who told me I had "mild wagerers". The pulmy looked at the ANCA tests and other indicators and was certain that I did NOT have wagerers. He is in The Univ. of Rochester Medical Center and is the head of the department. Had seen many weggies. I guess there was no elevation to the C-ANCA and only a slight elevation to the p_ANCA. I have had numerous Chest and Head CTs. The chest CTs show very mild bronciectasis. He did a bronchoscopy and cultered everything he found. Nothing. The head CTs show sinus disease - lots of mucous and thickening of the sinus walls.


The first ENY I went to also saw no signs of Wegeners, and it seemed the two times I went there I was feeling relatively clear for me. My bull dog doctor referred me to this latest ENT/Rhinologist who is also at the Univ. of Rochester Medical Center. Very well regarded. He looked at my most recent CT which showed mild disease and seemed surprised that I feel as bad as I do. I worry sometimes that the doctors think I am exaggerating, since it is mostly only the hospital doctors who have seen me really bad. It can't be an exaggeration I guess if the hospital gives you 125 mg of pred via IV push 5 times a day!. So - with this latest flare-up, I was THRILLED to be able to go to my bulldog doctor in full-flare. So, at least one of my regular doctors has seen me really bad.


In the course of two years, I have had three flares. In between times I think I am getting better, but down I go again. I DO know now that as soon as I lose my sense of smell, I need to get to a doctor ASAP and get some prednisone. It appears to be a fool-proof predictor of bad times to come.


So...sorry for going on. But that is where I am. Both the new ENT and my Asthma doc (fondly known as bull dog) think that the wheezing is caused by the continuously dripping sinuses, and that sinus surgery might help. The asthma doctor is of the opinion that chronic rhinosinusitis is one of the least researched and understood of the respiratory problems, even though large numbers of people suffer from it. I will be satisfied if the surgery lowers or eliminates the bad flares. I can live with the expiratory wheeze.


As for asthma meds. I have tried albuterol, pulmacort and symbicort at different times. Symbicort works the best. Albuterol works only to alleviate the shortness of breath, "elephant on chest" symptoms. Once the elephant is gone, I might as well breathe in warm air for all the good it does. My asthma doctor has noted on several occasions that inhalers (rescue or otherwise) have little to no effect on the wheezing. that worries me of course. My hubby has had asthma all his life. If albuterol didn't reverse his symptoms he would be a mess. I worry that I might get really bad, and the inhalers won't work.


Whew. Sorry for the length of this!! But I appreciate your perspective and will keep researching sinus surgery before I decide for sure. Keep the info and ideas coming!

[pberggren1]

Well, you certainly don't have to apologize Jacquie about the length. I prefer to have it long with lots of details, that way I can tell better what is going on.

It sure seems like you don't have Wegs. It does seem like you do have Asthma though. At least you have good docs, at least it sounds that way to me. So maybe the sinus and nose surgery is not a bad idea at all.

I forget, do you rinse your nose day and night? That is key with any nose problems.

[BookNut]

Yup. Twice daily rinses. It just seems so unusual to develop asthma at age 64! Hopefully if the sinus stuff gets cleared up, the asthma will go away, or at least stay at the manageable (non-elephant on the chest) level. :rolleyes1:

[BookNut]

[QUOTE=Alysia;71731]Hi Jacquie,
I'm always happy to hear from you :thumbup:
/QUOTE]

I just recommended to a friend of mine that she look for a forum about her disease - scleroderma. I told her how fond I have become of all of you. Your personalities shine through and i would miss my friends if I didn't check in now and again. There is such a weath of knowledge and compassion here. I have looked around for a forum specific to my problem...but none are so active as you guys are. Even if I find something....I plan to keep checking on your guys. All of you are so brave, informed and funny! Aysia, Michelle, Phil, Anne, DrZ and many more. Bravo!! EVERYONE should have an online support group!!

[Alysia]

[QUOTE=Alysia;71731]Hi Jacquie,
I'm always happy to hear from you :thumbup:
/QUOTE]

I just recommended to a friend of mine that she look for a forum about her disease - scleroderma. I told her how fond I have become of all of you. Your personalities shine through and i would miss my friends if I didn't check in now and again. There is such a weath of knowledge and compassion here. I have looked around for a forum specific to my problem...but none are so active as you guys are. Even if I find something....I plan to keep checking on your guys. All of you are so brave, informed and funny! Aysia, Michelle, Phil, Anne, DrZ and many more. Bravo!! EVERYONE should have an online support group!!

Hi Jacquie,
thanks so much :thumbsup:
I enjoy reading your posts :love: you are part of this family :hug3:

[pberggren1]

Never leave us Jacquie. You are with us forever.

[mishb]

Never leave us Jacquie. You are with us forever.


Agreed :thumbsup:

Stuck with us, you are - leave us you will not, yes hhmmm :flapper: (Yoda speak)

[pberggren1]

Oh Michelle....you are such a good Yoda!!!