Hello

[JimmyJames]

Hello All,

I have looked around the forum on and off for a few months now and finally decided to sign up. Anyways I will start with a brief version of my experience as I do not have the time right now to lay it all out. I was diagnosed when I was 21 in December or 2007. Judging by most of what I have read it was caught fairly quickly as my first symptoms started only 2 or 3 months prior. My first effected area was my ears. There wasn't much pain involved but I did lose my hearing (all most completely) for around a month. After 2 months or so of trying to figure out the ear issues I started to develop lung and sinus issues. Coughing up blood, wheezing, the whole works. After dealing with that for a week or so I was admitted to the hospital for tests and whatnot. After 4 rough days in the hospital of running every test imaginable I was scheduled for a lung biopsy the morning of December 24th. The next thing I know I wake up in a hospital room connected to multiple different machines with no idea of what day it was or what had happened. That night I learned that it was December 27th and that after the biopsy they decided to put me on a ventilator because I was in such rough shape. To this point I had no idea what I had or anything. As my parents were leaving for the night I asked them what the biopsy found and they told me it was Wegner's Granulomatosis. Anyways I was in the hospital another week following that and was started on Prednisone and Cytoxin. As the next weeks went by I continued to improve. After a few month we began tapering the prednisone at every doctors visit. After 8 months I was switched off of Cytoxin to methotrexate. I was then solely on the methotrexate for 2 years and then switched to azathioprine. Luckily since my initial bought with it I have not had any major flare UPS. It was suspected that I had a mild flare up a year or so ago but my doctor added one pill to the dosage of azathioprine and put me on prednisone for a month and that took care of it.

One question I have is does anyone have consistent nasal congestion and drainage? I have been dealing with it for a few months now and it is extremely annoying to be coughing and clearing my nose so often. And is there anything that you have found that has help/eliminated the congestion?

Like I said that was the very condensed version of my journey. Hopefully I will have the time to write out the whole thing.

Anyways I hope everyone is doing well and I look forward to reading and sharing in your journeys

[Pete]

Hi Jimmy,

Welcome to the forum. There are a lot of great people on here who will share their experiences with you.

Something that helps me with the drainage and sinus congest is a 10 mg loratadiene tablet each morning and 10 mg of phenylephrine in the morning and evening. The pulmonologist who diagnosed me suggested these drugs (both OTC), and both my treating rheumatologist and PCP know I'm still taking them. I have no sinus or drainage issues. Ask your doc for suggestions.

Good luck and better health.

[Jayne 14]

Welcome JimmyJames
I have nasal involvement & most days have congestion that leads to huge slugs I blow out ( helped with steaming ) and then a dribble of fluid for a bit
The slugs are more regular now and I can now breathe thro my nose sometimes / before I couldn't atall
I've not tried any medication as Pete suggests , and had assumed it would improve as my Wegs improves
Just another delightful part of our crazy disease I assumed
Don't forget to share your whole journey , we all love to hear & share fellow adventures on the new normal !!!!!


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[kaysee]

Welcome JimmyJames,
Glad you finally joined and shared your story. I have constant nasal drip but it is not severe. I get congested sometimes at night but it hasn't been too bad.I expected it to be a lot worse this spring as I have always had a time with allergies. Having been on pred for almost a year the allergies and sinus problems were gone. But as of Feb I am off pred so thought they might come back. So far no problems.

[drz]

Hello All,

One question I have is does anyone have consistent nasal congestion and drainage? I have been dealing with it for a few months now and it is extremely annoying to be coughing and clearing my nose so often. And is there anything that you have found that has help/eliminated the congestion?
Anyways I hope everyone is doing well and I look forward to reading and sharing in your journeys

Damage to the sinuses is often the first to appear and the most common residual symptom of Wegs and hardest to get rid of it seems. The damage to the sinuses causes the excess mucous and post nasal drip and coughing as it builds in the throat.

The best treatment is frequent nasal rinses and using a generic Muccinex to thin the mucous as needed.

Do you have crusting and blood clots too?

At the start of the year I had huge blood clots and sinus infections and had to rinse every couple hours to keep breathing. Now my rinses are down to twice a day and generally clear and almost no coughing or need to clear the throat either. For me the nasal and coughing and excess mucous varies from real bad at times to almost gone like now.

Of course a few minutes after posting this I had a serious coughing jag that lasted about a minute from mucous in my throat.

[JimmyJames]

I have tried Muccinex and sinus rinses but didn't think they did a whole lot for me, I may have to try them again.

I do have crusting and blood clots. If I remember to stay on top of it and keep my nose clear I don't have too much of an issue but every once in a while I have the joyous experience of clearing it out through my throat. I typically see the most in the morning, as I have the drainage overnight into my throat.

Thank you all for the kind words.

[MikeG-2012]

Damage to the sinuses is often the first to appear and the most common residual symptom of Wegs and hardest to get rid of it seems. The damage to the sinuses causes the excess mucous and post nasal drip and coughing as it builds in the throat.

The best treatment is frequent nasal rinses and using a generic Muccinex to thin the mucous as needed.

I'll second that one. Rinsing my sinuses like a fiend has been the single best thing I've done to combat the crust monsters that were invading my sinuses and nose. At one point during this, I was at my ENT's office once a week to have a crust removal party. (-8 I found that the more I rinsed, the better the linings started to recover too. I still send at least 3 liters a water through my nose and sinuses 1 -2 times a day with the WaterPik.

[marta]

Hey JimmyJames,

Your story sounds so very similar to my story, it's almost a little freaky, but I think that's applicable to most of us.

I was just talking to my doc who was doing a professional development seminar for a bunch of GP's on WG and other Vasculitides. I asked her if she is planning on doing anything with ENT's, since they tend to be the first specialists we go to and not very many of them actually make the diagnosis. From the survey I did, very few ENT's actually are the ones who make the diagnosis. She said that it will be her next professional presentation - the ENT's.

As for the sinuses. I've been dealing with the same stuff for a few months myself. I think there is a stupid low grade flu that's going around because I know many people in my town dealing with the same thing, but with us, when it gets in the sinuses it leaves even slower than others. The neti pot sure helped me when I was in the thick of it, but I haven't brought it out for a couple of years. (Hallelujah) My best defence has been much like yours, keeping it clean. I started a practice when things were bad of 'farmering' into the sink.... I'm sure it drives my family nuts but it keeps that stuff out of my sinuses, and from getting infected. I think my obsessive farmering is one of the factors keeping me from picking up all of the flu/cold bugs going around my kid's school. It saves on Kleenex and toilet paper too

Best of luck with the ick, and thanks for sharing your story. I'm sure many people will be thrilled to read that you've been WG free since your treatment in 2007. This is the kind of stuff new recruits need to read.

Marta

[annekat]

Welcome, Jimmy James. Your story is a lot like mine except that your WG was caught a lot sooner and your earlier treatment may leave you with less permanent damage to your tissues than I have. But all of us with sinus issues tend to have the troublesome mucus and coughing drag on for a long time. I'd suggest you try several sinus rinses in a row, not just the one, and you might be surprised at what comes out. Inhaling steam or taking a hot shower first will help loosen things up. If you search sinus rinses in the archives you'll find a lot of tricks and techniques. And, as Mike says, having an ENT doc clean out your sinuses and nasal cavity every so often will really work wonders. As for the coughing from mucus stuck in the throat, that troubles a lot of us, too. It can sound like we have horrible asthma or are deathly ill when we are just trying to cough up a chunk so we can breathe easier. I'm working on that one a lot recently, and it does come and go with weather, stress levels, sleep quality, etc. Inhaling steam is helpful there, too, from a bowl with herbs or salt added to the hot water and a towel over one's head. Another member has recently introduced the idea of using a nebulizer with specially formulated ampules of saline to add to the water, which is said to loosen up the mucus and be therapeutic to the bronchial tissues. (This was in a recent thread called Never Stop Researching, or something similar.) I want to try it. And then there is Mucinex.. I've heard and read that for the tablet version to be effective, one must drink lots of water. I've found the liquid guaifenesin, same drug as in Mucinex but in syrup form, sold as an expectorant or "tussin" in the cough syrup section, to work better. Just don't get the kind with DM, or dextromethorphan, added, as it can be harmful with continued use; read the label. Just a few of many ideas available, so read the archives and keep asking questions.

You seem to be recovering at a good rate, and keep in mind there will be residual symptoms and fatigue indefinitely, in most cases. Just hang in there and things will get better.

[mishb]

Hi Jimmy and welcome to the forum.

Not a very nice way to get entrance into this exclusive club, but hey since you have been diagnosed with WG, then this club is the best place to be

Marta, I love my ENT since he was the only one in over 12 months, who was able to diagnose me and that was within two minutes of seeing him.

Things will certainly get better for you Jimmy.
As Anne said, Just hang in there