Hello from the East Coast US!

[whatthewhat]

Yes, I echo all the welcomes :-) but just popping in to add that since Phil is busy right now I'll step in to ask you about sinus rinsing! My daughter has significant sinus involvement and the rinses are wonderful for her. Phil uses some sort of Waterpik nasal attachment, but my daughter just uses Neilmed squeeze bottle. (Neti pot does not touch her sinus crusts.) all of this is under an ENT (experienced in WGs) guidance, of course. Hugs, wtw (from beautiful California!)

[Dirty Don]

I finished the 4 Rituximab infusions 8 weeks ago and just started MTX because my doctors felt my sinuses weren't improving fast enough.

Thanks Sunshine sorry for shortening your name, not into typing! LOL!). Now I understand why my initial Mayo rheumy was so angry at the hospital that initially treated me for WG/flare, etc. They administered neither rtx nor mtx upon first pending dx...it would've knocked down the initial flare faster causing less damage. She was really pissed at them. I didn't understand that protocol at the time...now you made it make sense. Knock it down, then control the WG...sighs...if only more of us were privy to that knowledge...your docs are good...keep on them!!!

[Alias]

Hi Sunshine, you have had a pretty rough ride over a short period of time, but it sounds like you are already
making big strides in adjusting to living with this illness.

I was diagnosed about six months ago, and I really relate to what you say about being robustly healthy one minute, then suddenly feeling deathly ill and learning that you have a life changing illness. I went from seeing a doctor maybe once or twice a year to practically needing a spreadsheet to keep track of appointments and medications! It is hard not to feel sad, or angry, from time to time.

Your exercise and meditation regime will really help you as you continue to recover and regain stamina and strength. As others have said in many posts, keeping stress at bay as much as possible is very important. For whatever reason, stress seems to be a major trigger for symptoms.

I'm not sure what you mean by your nose aching, whether you're talking about your nasal passages or bony areas? I had terrible pain, crusting, nosebleeds, etc for quite a while, but that subsided pretty shortly after getting treatment started. You say you had significant sinus involvement, so maybe there is still some active inflammation there that will subside as the MTX takes effect. In any case it sounds like you are on a good track now.

[jlove]

Welcome morningsunshine! I'm sorry to hear you're dealing with prednisone right now. I just recently came out of remission and started a course myself. When I was 17 I went on 100 mg of prednisone for about a month and it was torture for me. I gained a ton of weight and was a hormonal mess. Since then, I've dreaded taking prednisone ever again. At least that was the case until I too had a mystery sinus infection at the beginning of this summer that just wouldn't go away. I felt so terrible mid-July that I told my doctor I wouldn't hate him if he put me on prednisone again just because I wanted to be able to breathe well again.

I know what you mean about feeling vain. It's hard to look in the mirror and not like what you see, even if it is temporary. I try to drink a lot of water to prevent retaining too much water weight and I feel like it does help a bit. It helps me feel like I'm being proactive at least. I also know what you mean about people telling you how to cure yourself. It's always interesting to see how people react to all things Wegeners related. Some people are very intimidated by the sound of it and have no idea what to say to be helpful. I always appreciate the attempt though

Good luck with treatment! This is a very cyclical disease so I have times where I feel more or less "normal", times where I feel terrible, and then times somewhere in between. It sounds like you're off to a good start with taking care of yourself and keeping the big picture in mind. Until then, I'm happy to commiserate about prednisone on here

[PJ2010]

Welcome Morningsunshine,

Your journey so far to me sounds like almost a fairy tale version of what happens to a person that gets Granulomatosis with Polyangitis in a perfect world.

It sounds like your doctors are very switched on and very efficient in diagnosing and treating this disease.

I wish my journey even now was as smooth as yours. The various doctors I have seen over the last five years all have different ideas on how to treat the disease and I haven't yet seen a sign of a structured approach to my treatment.

Today I'm seeing my specialist for the second time in a week because it appears that I'm having a relapse. I'm crossing my fingers that they get their sh.t together and efficiently and effectively start a treatment regime to tackle this problem.

Keep up the positive attitude and my thoughts are with you.

[Jayne 14]

Welcome Morningsunshine
Great name !!
This place is my saviour , help advice & support . If ever I have an odd symptom / reaction I come here and discover its Wegners related
Everyone's journey is different but has echoes in everyone's
I have saddle nose : and do suffer quite bad pain from my nose sometimes . But I am so so lucky my crazy nose helped me get diagnosed . I say embrace your new normal it will get easier . Weight gain from the pred is horrid but hopefully short term . And the meds help save us .
Good luck my friend x


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[Alias]

Yes the rinses are critical. My local ENT did not offer any advice on rinses, instead had me continuing with a nasal spray. Since I had to travel to Seattle to see a rheumatologist, I also arranged to see a rhinologist at the same clinic, which turned out to be very worthwhile. First of all, the exam and the discussion about what was actually going on anatomically was much more sophisticated, so I came away with a much better understanding of the damage that had been done and what I might expect in the future. Also, she prescribed rinses (using the NeilMed squeeze bottle) with two medications. One is Bactroban disolved in the rinse, and the other is a liquid topical steroid that is actually designed to be used in a nebulizer for treatment of asthma. The latter comes in 2ml ampules that you just squeeze into the rinse. She said the sprays were only adding to my problems. If I skip a day or two of rinsing because I'm traveling or whatever, I really feel it.

[morningsunshine]

@Annekat: no, you weren't discouraging at all! I'm really glad to hear that some people are in drug free remission. I'm holding onto that hope! :-)

@Whatthewhat: Sinus rinses are saving my sanity right now! I use the Neilmed squeeze bottle you mentioned--it's the best. I'm definitely going to look up the waterpik. Every ENT that I've been to (4 at this point) has recommended sinus irrigation. I'm also using Bactroban, a prescription ointment, which has reduced the crusting significantly.

@Dirty Don: I've lucked out with my treatment so far. I'm sorry to hear they didn't get you started on MTX or RTX right away!

Thank you to everyone for your stories and encouragement. I'm starting to realize just how lucky I am to be getting such a structured, comprehensive treatment plan from my doctors.

And finally a huge THANK YOU for the wonderful welcome to this forum! I'm really glad to be part of this network and am looking forward to continuing this journey with all of you. I'm already planning to go to the vasculitis symposium next June, so maybe I'll meet some of you there!

[Michael Bell]

Hello Morningsunshine and welcome. I hope you are responding well to your treatment and things continue to improve for you. You have found the right group here, and the advice and information is first class.
Mike