Limited wegeners

[Colleenstevens]

Hi my name is colleen, I'm 29 years old and a momma to a beautiful 18 month old boy! I was diagnosed with limited wegeners about 8 years ago ( the wegeners only effecting my sinuses). They diagnosed me after i was in a car accident and my eye started turning red. after endless test they finally did a biopsy of my nose that came back positive so the doctors said they believe that the car accident triggered the wegeners to appear earlier than it normally would!The past couple of years although on prednisone have been rough to say the least! Two years ago at 7 weeks pregnant, a sinus crust drained into my throat and I quit breathing! My husband blew into my mouth and heard the scab/ nose crust move. After staying in the icu I was released and felt better the rest of my pregnancy. The past couple of months, although on prednisone I have had an endless amount of scabs/ nose crust draining into my throat! There have been a couple close encounters where it has completely blocked my airway and I can not move it, getting almost to the point of passing out. On a daily basis I spend endless hours on a nebulizer trying to moisten the scabs/ crust from my airway so that I can breathe! Does anyone else have this symptom?? Is there a machine available to help get them out??? Ah information would be appreciated!!!

[Alysia]

Hi colleen.
I have it. (and I hate it) when its getting worse it is a sign that your WG is kind of "active".
you must see a WG doc. pred is not enough.
I was also considered "limited" but this "label" was misleading, and I didnt get enough treatment untill my nose started to change.
good luck.

[drz]

Sinus rinses several times a day help a little but getting Wegs under control is main thing to get relief.

[Dirty Don]

Hi Colleen, welcome to THE forum! LOL! As you can see, we're (and now you) an eclectic group of experienced and curious Weggies! Good info, good people, good place to come to ask and just vent...

Anyway, as drz suggests, you must get the disease under control. Alysia pointed out that pred is not enough, even with 'limited' version. All that means is no lungs or kidneys along with the sinus problem you already have...it does not mean they can't or won't be involved at later dates if the WG is not controlled. I have the same...and am on MTX and pred. Limited cases tend to start with mtx along with pred to see if the WG can be controlled. MTX is a lesser version of some stronger drugs used to suppress the AI...since you have crusts and clots, it appears your WG has not been regulated...you need something along with the pred. Are you seeing an experienced WG doc(s)? Does your current doc consult with experienced AI docs? These are things to ask before you try more pred. Prednisone, although it assists in dampening WG, is an anti-inflammatory...alone it is not enough to control WG. Best of luck to you.

[Marci]

Hi Colleen, Welcome! I agree you need to probably be on another med besides just the Pred. If you're having times when the crust are big enough to block your airway that's not good. I have crust in my nose too, but not as bad as yours. My doctor has me using a saline rinse once a day and I also use a special onitment that the Cleveland Clinic uses that after I rinse and wash out the crust I put it in my nose and breath deeply. These two things seem to keep the crust soft because it washes out when I do a good risne.

[Alysia]

My doctor has me using a saline rinse once a day and I also use a special onitment that the Cleveland Clinic uses that after I rinse and wash out the crust I put it in my nose and breath deeply. These two things seem to keep the crust soft because it washes out when I do a good risne.

Hi Marci,
what are the names of this two ? the rinse and the ointment ?
I tried a lot and nothing helped me. some even made it worse...

[Marci]

The rinse is an over the counter rinse called NeilMed Sinus Rinse (www.neilmed.com (http://www.neilmed.com)) I get it at my grocery store. It comes in little packages and I mix it with distilled water. The onitment is something the Cleveland Clinic has especially made for them. I had to get it at their pharmacy and it cost me $75.00 for 4 jars which should last for a long time. I think just the rinse helps to keep the crushing softer. The first time I did it I couldn't believe the large piece that came out. I warm it up in the microwave for 30 seconds. Cold water did not feel good.

[annekat]

Yep, you must have more than just prednisone. At the same time, you need the pred along with the something else (likely MTX, as Don suggested).

Yes, try the Neil Med Sinus rinse. A lot of us use it and I have been since 2.5 years before I even knew I had Wegs. Was getting big chunks way back then, but no one said anything. Thought I just had sinus infections. Anyway, for me , the chunks can indeed be huge, but usually I can cough them up if they drop into my throat. Or a huge one will come through my nose and I'll be amazed it could even fit. You are not alone. I've used Ayr ointment, which is aloe vera based, to moisten a dry nasal lining. It works OK but I don't use it much and I imagine it's not as good as the CC stuff. Drinking lots of water and using Mucinex, or generic guaifenesin, can keep the mucus thinner and easier to flush out. Inhaling steam from a bowl with an herb or salt added, not plain, can help loosen things up. Plain water can definitely sting, I've found out.

BTW, welcome to the forum. It's an excellent one and we are glad you are here.

[drz]

In the hospital and nursing home they used surgical gel to moisten my nasal area to reduce bleeding from the crusting. It is like a high priced but sterile form of regular K-Y jelly or vaseline substance and should be readily available in most drug stores. The sinus rinse is a mixture of salt and baking soda and can be easily made with three parts salt (a non iodized form or sea salt might work too) and one part of soda. The water should be warm and sterile like distilled water or water boiled first but I usually just use hot tap water. I only use the package sinus rinse mixes when traveling. My Weg expert said to rinse twice a day to reduce crusting and also help prevent infections and a lot more often when I have a sinus infection or cold.

I like the Squirt bottles the best but also have an electric pump version for sinus rinses that I use when I encounter some large resistant junk that needs to be dislodged. Some use the Neti pots for a more gentle rinse but fnd the squeeze bottles work will too if you go easily on them and don't squeeze them too hard or fast. They advise not to do rinses if nasal passages are blocked cause you may just be forcing an infection into your ears and create bigger problems.

[drz]

In the hospital and nursing home they used surgical gel to moisten my nasal area to reduce bleeding from the crusting. It is like a high priced but sterile form of regular K-Y jelly or vaseline substance and should be readily available in most drug stores. The sinus rinse is a mixture of salt and baking soda and can be easily made with three parts salt (a non iodized form or sea salt might work too) and one part of soda. The water should be warm and sterile like distilled water or water boiled first but I usually just use hot tap water. I only use the package sinus rinse mixes when traveling. My Weg expert said to rinse twice a day to reduce crusting and also help prevent infections and a lot more often when I have a sinus infection or cold.

I like the Squirt bottles the best but also have an electric pump version for sinus rinses that I use when I encounter some large resistant junk that needs to be dislodged. Some use the Neti pots for a more genetle rinse but fnd the squeeze bottles work will too if you go easily on them and don't squeeze them too hard or fast. They advise not to do rinses if nasal passages are blocked cause you may just be forcing an infection into your ears and create bigger problems.

[mishb]

Hi Colleen, welcome to this prestigious group..............WG suffers, carers and loved ones all welcome


I also use the squeeze bottle but you really shouldn't use plain tap water (drz :ohmy:) you should at least boil the water first.
I also use a plain saline spray when I am out and things get too blocked up.
I try to only use it once a day, sometimes once every two or three days. My ENT said I could be causing more crusting by rinsing three or four times a day......so I stopped. Hasn't made much difference whether it is one or four, so I choose the lesser to avoid the drowning feeling.
I was also prescribed with an antibiotic ointment called bactroban, it helped for a little while but doesn't seem to do much anymore.

I hope some of our advice/recommendations have helped.

Just know that you are not alone in your crusting struggles and we are all here to help.

[Colleenstevens]

Thanks everyone for all the advice! My "limited" wegeners has always seemed to be active since I was diagnosed 8 years ago, although it seems to flare more in the changing seasons!!! I see wonderful doctors at Barnes hospital in St. Louis mo! I have tried the nasal rinses but i usually feel the same after doing them so I don't do them very often! I'm def. going to look into some of the different rinses and avi to try!!! In 2 weeks I go to see a pulmonologist so I'm hoping that he will be able to help and have some answers as well!! It's nice knowing that I'm not the only one dealing with this!!!

[Psyborg]

Welcome Coleen, I don't deal with sinus issues, but I see the crew has already provided good advice, so just wanted to say hi :)

[annekat]

Colleen, I hope you will speak to a treating doctor about the fact that we all think you should be on an immunosuppressant, such as methotrexate (MTX), as well as prednisone. Maybe the doc who treats your Wegs is not experienced enough with it and needs to consult with one who is. Check the Vasculitis Foundation website for a list of specialists. Since you are in Chicago, it at least shouldn't be too hard to hook up with a good rheumatologist with a reasonable amount of Wegs experience, I would think. Not to put down the docs you already have, they may be very good docs. But many good docs don't know Wegs. Mine doesn't, but I've been lucky, he's figured out how to treat it so far, and I have the forum to get the info I need to check up on him.

I'm afraid your light case of Wegs could get worse over time, which can be gradual but is typical. You could end up with a visible nose deformity, as Alysia mentioned above. This is called saddle nose, and I developed it after 2.5 years of not being treated for Wegs, and several of us on here have it. It is permanent, correctable only with surgery. I don't think prednisone can prevent this from happening, but MTX could nip it in the bud by stopping the progress of the disease.

[drz]

A hint that appeared before is to add some ALKOLOL to your sinus rinse as it helps loosens the mucous and gives a nice fresh feeling after the rinses. I got mine at Walgreen Drugs but it is stocked elsewhere.

[annekat]

A hint that appeared before is to add some ALKOLOL to your sinus rinse as it helps loosens the mucous and gives a nice fresh feeling after the rinses. I got mine at Walgreen Drugs but it is stocked elsewhere.Oh, yes, I tried Alkalol! I found it to be very strong so could only add a little. But I liked the way it felt. I had to to special order it at Rite Aid, and had checked Walgreens in the past, and not seen it.... things change, it may be more available now. Thanks, drz, I'd forgotten about it.