Hello from the East Coast US!

[morningsunshine]

Hi everyone!

I've been reading the forums for a few months now and I finally worked up the courage to introduce myself. I'm 27, female, live in a city on the East Coast (but my heart is in my home state of California!), am married, and love running around outside and generally being active. I was diagnosed with WG in May and it's definitely turned my life upside-down. I'm still trying to figure out what having WG means for me and how I can manage this disease long term.

My WG story, in brief:

After experiencing 4 month of a mysterious never-ending sinus infection, I started developing WG symptoms: loss of hearing, some loss of eyesight, gingivitis, ruptured eardrums, coughing up blood, joint pain, and of course, terrible sinus congestion. After seeing several doctors (and thinking that I was on the brink of death), I was admitted to a hospital, where I was given the diagnosis of WG on May 20. I have sinus, lung and kidney involvement. They gave me the first Rituximab infusion in the hospital and I've been home recovering ever since. I finally return to work this week and (fingers crossed) back to my normal life.

Medications: 4 infusions of Rituximab, 20mg Prednisone (tapering from 60mg), Bactrim, Methotrexate, Folic Acid, and I'm going to get an infusion of Reclast soon. My body has responded really well to the treatment so far and my team of doctors seem optimistic. I just started the MTX last week and have only had mild side effects. I'm hoping that the MTX takes away the lingering sinus issues and joint pain.

The prednisone has caused some awful side effects, most notably I've gained 22 lbs in the last 2.5 months and my face and neck are HUGE. It's mortifying--I never thought of myself as vain, but I hate looking in the mirror now. I really can't wait to get my face and body back. I also have stretch marks everywhere :-( I have trouble looking at photos of myself from a few months ago because I look so different now. And I feel like a walrus.

I'm also terrified of developing saddle nose--my ENT said that it could develop over several years. My sinus involvement was pretty significant and my nose still aches every day. I've been really gentle with it, hoping to keep it around for as long as possible!

I'm still working through the psychological parts of what WG means for my life. Up until this point, I've been fortunate enough to have very good health--really have never had any issues before this. I definitely took my good health for granted! And now I have so many questions about the future and what managing this disease will mean. I'm so grateful that my WG was found relatively early on, and I'm grateful for the wonderful support I've gotten from my family, friends, doctor, and job. Nevertheless, some days I just get really sad.

A lot of well-meaning friends and family have offered ideas about how to "cure" me--through lifestyle and diet. It's been hard (and sad) to explain to them that this isn't something I can cure--instead I have to manage it. It's also hard to make people understand just how serious a relatively unknown, rare autoimmune disorder is. I'm trying my best to help my body heal: Over the last few months, I've been aquajogging, walking, doing yoga and meditating every day, and in the last month have really cleaned up my diet. If anyone has any other ideas about how to help your WG, I'm all ears!

Finally, thank you to the members of this forum for posting. Your posts have been a great resource for me as I'm learning about WG and am coming to terms with my treatment and progress. I really appreciate all of the information that's on here!

[Dirty Don]

Welcome Sunshine! Glad to have you aboard and talking about your self...very important in your recovery. This IS about you and no one else...except for the wonderful and understanding support you get...when you get it. Aside from drug protocols, patience and fortitude will be your best efforts. Sounds like your docs have your case going in the right direction, altho I question why you're getting rtx and mtx at the same time. Both are toxic, both are effective, both should be for different severity of cases. Mtx can do damage to the kidneys, while rtx is the last resort/sometimes best resort as it's the strongest drug we take at this time. As for recovery, you're right, no cures, but there are different ways to feel better and increase your stamina...eating well is one, physical improvements help, but your mental/emotional stamina is what will help most in the long run. Keep stress down! Sounds like your docs understand WG, keep asking them any and all questions, make sure your docs DO understand WG and what it can do, and hang tough even in the worst of times...there most likely will be more down times as you recover. FYI: I am in 4th year since dx, am doing well, living my 'new normal', have been feeling quite well since about last November...so there is improvement, it's just a matter of time and following protocols. Hang tough, and best to you!

[drz]

Hi everyone!


Finally, thank you to the members of this forum for posting. Your posts have been a great resource for me as I'm learning about WG and am coming to terms with my treatment and progress. I really appreciate all of the information that's on here!

Sounds like you are doing well in dealing with the usual issues. Like Don above my diagnosis and initial treatment was over 4 years ago and i also have made substantial improvement from my low point back then but I also have had to considerably down size my life style to my "new normal level" to accommodate the changes brought on by Wegs.

Some of us are luckier than others and some seem to have little damage or need to change their life style if their Wegs is mild and caught early enough before it does major damage. Some forum members still do some rather incredible feats that many healthy people can not do. Adjustment and recovery from Wegs takes time and teaches one patience so best wishes on your journey to finding and accepting your "new normal".

[annekat]

Welcome to the forum, Sunshine! This is absolutely the best forum I've ever seen on any subject, and I think is a lifesaver, physically, mentally, and emotionally, for people with WG. Thanks for telling your story so well. Your case sounds a lot like mine, with a few exceptions and variations. Mine started with a severe infection in both ears, then followed by 2.5 years of those never-ending sinus infections, sporadic joint pains, etc., followed by severe lung issues that finally got the notice of doctors and led to my dx by nasal biopsy. So yours was caught a lot earlier, which I hope means you will suffer less damage to the sinus and nose area and be less likely to develop a saddle nose, which I have. Although my nose never really hurt, so I don't know what to say about that. I have been lucky enough not to have kidney involvement, so far. Every case is a little different. Other than that, Don and drz have said the important stuff. It sounds like you are doing very well, and keep up the good work. I look forward to hearing more from you. Don't forget to add your location to the Weggie Forum members map accessible through the link in blue at top of page, where you can see the distribution of members worldwide.

[Psyborg]

Welcome to the forum Sunshine!

[mishb]

Good morning Sunshine - well it's morning in Australia anyway :smile1:

I'm so glad you finally decided to say hello but I also suggest that you keep on reading as many posts as you can.
This forum is a valuable source of information and the wonderful people on here, even more so.

I'm glad you aer now able to get back to a, somewhat, reasonable existance.

Take care and .............

[morningsunshine]

Thank you, everyone, for your welcoming words!

@Dirty Don: I'm glad to hear that you're doing well!! I finished the 4 Rituximab infusions 8 weeks ago and just started MTX because my doctors felt my sinuses weren't improving fast enough. You're right that both are extremely toxic! Fingers crossed that the MTX starts working soon...

It's encouraging to read that members have trained for marathons (and climbed Everest?!). I was training for a marathon when WG hit.

[annekat]

Thank you, everyone, for your welcoming words!

@Dirty Don: I'm glad to hear that you're doing well!! I finished the 4 Rituximab infusions 8 weeks ago and just started MTX because my doctors felt my sinuses weren't improving fast enough. You're right that both are extremely toxic! Fingers crossed that the MTX starts working soon...

It's encouraging to read that members have trained for marathons (and climbed Everest?!). I was training for a marathon when WG hit. Some of us are on MTX or others for years, and we do OK. Some have to repeat the RTX later, after the initial series of infusions. As is often said, the potential toxicity of the drugs is better than the alternative. Also, the sinus stuff can take a long time to clear up, and can go on indefinitely because of damage done to the tissues and bones, but having caught yours early, you may have a lot more success in that area. Most of us don't go into a permanent remission, though, so keep in mind there may be flares and relapses. If these are caught early, they can be nipped in the bud, we hope, but with the same nasty meds.

I wanted to point out that the woman who climbed Mt. Everest has also run a team of sled dogs in the Iditarod race in Alaska, with WG! You will still be able to exercise and be physically active, once things are brought under control, and should be able to get back training for marathons!

[morningsunshine]

Thank you for the info about MTX and the sinus stuff; I just want the sinus pain to go away. I'm staying hopeful for a semi-permanent remission with occasional RTX infusions, which is what my doctors are forecasting. Remission = no signs of active disease, right? Or does it mean no drugs? I would LOVE to eventually be off all the meds, but I think this may be a pipe dream--my doctors have essentially said we need to wait and see.

One of the strangest things about WG is how differently it manifests & develops in different people! It seems like no two cases are the same and sometimes I think it's a miracle I was diagnosed. Before being admitted to the hospital I had two doctors tell me that I definitely didn't have WG, even though my ANCAs indicated it was possible. They both told me that I was too young and that it's too rare. I trusted them and didn't do any research on WG until after I was diagnosed.

And WOW that woman sounds awesome! She's definitely an inspiration to me and is giving me hope that I can get back to my active life eventually.

[annekat]

Didn't mean to be discouraging. Some people do get to a drug-free remission and others are in a remission maintained by meds, and probably at lower doses than when they were originally treated. I don't know much about RTX at that stage, as I've never taken it. But yes, it is considered remission if there are no active signs of the disease. And yes, you should stick to the dream of being off all meds. It is possible and there are people on here who have done it.

As for docs telling you you were too young to have WG, I have heard that kind of story over and over. Docs who really know nothing about it but make these statements as if they are the final authority. We have had people here on the forum who are in their teens and heard of children younger than that having it. Docs that jump to these conclusions are dangerous. I'm glad you got in with the right ones, and that you seem to be in good hands and doing well.

[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 :biggrin1: 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