Needed to find you guys for sooo long!!!

[Mas78]

Welcome to the forum.
I bet that if your doctor has referred you to somebody they trust then they will still consult with the new doctor if needed. I know that's what my Kidney doctor did two years ago when he switched over to the VA hospital.
And again, don't be afraid to ask any questions. Someone on here will be able to relate and give a helpful answer.

[annekat]

Don't worry, babbling is perfectly fine on here! Most of us have done it from time to time, and you will see MUCH longer ones than yours, the more you read on here. And where you posted is fine; New Members Introductions and Weggies Stories can both be used to introduce yourself and your experience with WG. There aren't too many wrong ways to use the forum, though you may be gently steered from time to time. There are some rules about not discussing religion and politics, and that is about it, or there may be others... those are posted somewhere that you can see on the main Forum page. Looking forward to hearing more from you!

[BookNut]

I am so glad you found this group. you will love them and learn so much and get SO much help. I was misdiagnosed with WG, found the group, and have stayed on because leaving is just unthinkable. So....congratulations on finding a great group. Wishing you all the best!

[gilders]

Welcome. Great story. Lot's of similarities with me. I was 17 when Wegener's first struck. Rheumatoid arthritis, vomiting blood, mis-diagnosis, failing kidneys, etc, etc were also what occurred at onset.
So good to hear you've got such a loving family and even with this illness you see yourself as blessed!

[im so blessed]

Welcome. Great story. Lot's of similarities with me. I was 17 when Wegener's first struck. Rheumatoid arthritis, vomiting blood, mis-diagnosis, failing kidneys, etc, etc were also what occurred at onset.
So good to hear you've got such a loving family and even with this illness you see yourself as blessed!

Hi! Ive been looking for someone closer to my age because i no its more common in older ppl. So now i now you are out there. I was just saying to my husband this morning that after reading post on here, i could die today and i feel as if i was blessed beyond what i deserve! When life itself is almost snached from you, you start to see little things as big blessings. Dont get me wrong...i dont always FEEL this way. But i no its true! So have u ever been off ur maintenance drugs?

[Bek Stone]

Welcome blessed I know exactly how you feel I only found this forum two weeks ago and I felt like crying to I was so happy and have been ever since I've found everyone on here helpful and supportive u don't have to feel alone anymore :-) I was also diagnosed young but not 16 I was 18 and that was 6 yrs ago so I can't imagine how alone you felt for 13 yrs!!! I know I did but ive only had WG for 6 but im so happy you found this site and im sure it will help :-) it has for me thats for sure

[gilders]

Hi! Ive been looking for someone closer to my age because i no its more common in older ppl. So now i now you are out there. I was just saying to my husband this morning that after reading post on here, i could die today and i feel as if i was blessed beyond what i deserve! When life itself is almost snached from you, you start to see little things as big blessings. Dont get me wrong...i dont always FEEL this way. But i no its true! So have u ever been off ur maintenance drugs?

Hi again. I've been on this forum for about a year now and, to be honest, from what I remember there is quite a few people that have joined after me that are either young, the parents of a youngster or were originally diagnosed quite young. I know 20 years ago when I was diagnosed, I was told told I was one of, if not THE, youngest person in the UK to have WG. I don't know how accurate that statement was, but I do think that generally a few years ago it was felt that Wegeners mostly presented itself from 40+ years, but I think now there is no real age at which it's likely to first appear.

As for being off maintenance drugs, the quick answer is YES!
The longer answer is that after first diagnosis I got in to remission, meds were tapered and eventually I was off maintenance drugs. Unfortunately I only lasted a week or two before I had my first relapse. I have always aimed to get off maintenance drugs after each relapse and have managed! More good news is that the periods between coming off my meds and the next relapse has grown each time. I'm currently on 10mg Pred and 100mg Azathioprine (Imuran) for a relapse that started 26 months ago and I expect to lower the dose on one of these tablets in January (slowly).

[im so blessed]

I manage to only need pred during my flares which have been almost every year. But i stay on imuran 100 and methotrexate 12.5 weekly straight thru. sometimes i wish i could give my system a break. but you know, its a balancing act. Glad its working that way for you !!!! o and yes. i was told the same thing about my age back in 2001. things must be changing. makes you wonder why.

[Ailish]

Hello,
I just joined too! I read your story, you are a miracle, you've been trough hardships, made it out, made the best of it and still going strong! Such an inspiration We all fight our own battles most of my friends and family don't fully understand mine, and I wouldn't want them to. I also felt so lonely and scared, I only read statistics and journals..now I registered here and see so many beautiful and inspiring people whom I can understand from reading even half of their sentence...

Thank you for sharing your story!
-Best wishes!