'Limited' Weggie introduces herself...

[chrisTIn@]

Hi everybody! I'm new here and I 'd like to introduce myself. In the early summer of this year I was told I have 'Wegener's'. Till that moment I had never heard of this disease before.
The doctor who gave me the message showed me her computerscreen.
'Look here', she said, 'you have ANCA's to a level of 45.9. That is more than six times as much as in the blood of healthy people.'

Till that day I did'nt even know that people could have things called 'ANCA's' in their blood, and that there is something called 'PR3', but I am a fast learner, like all of you other 'Weggies', as I noticed by reading threads on this forum.

It's now several months later. I am on a medication that is called 'Bactrim' I suppose (in Europa - yes I live there- it 's got an other name) and I 'm doing quite well. I have found an other doctor who is a real Wegener's specialist (he is an immunologist as well as a nefrologist). Apart from fatigue en sometimes joint or muscle pain I don't have a lot of complaints right now, and I 'm happy with that.
I hope my condition will even get better in time and that I can eventually stop with my medication, but only time can tell.

I hope I can learn a lot here, and that I will find answers to my questions, and that I can find and give support here.

I am a woman, in my early fifties, I have a husband and a lovely daughter who is a student right now.
Wish you all the best with taking control over your disease, and finding the best help you can get!

[staystronglivelong]

Hi ChrisTin@

My husband was diagnosed in June this year and he was put on cyclophosphamide and prednisone - he started on 60mg orally of prednisone but now he is on 10mg which has been being gradually reduced since he was on that starting dose of 60mg. He also had the steroid by way of IV in the early days and is having the Cyclophosphamide every 3 weeks intravenously. His kidneys and lungs are not involved.

His symptoms were Severe headaches - esp at night. Burning sensation on top of scalp. Sweating excessively. Dramatic weight loss. Sinus pain. Constant bloody discharge from his nose. Completely blocked nose for 3 months until treatment took effect. Tiredness. Swollen bridge of nose. Hearing problems. Bad toothache from all teeth. Sometimes some joint aches.He is doing well on his treatment and has another 3 months of cyclophosphamide to go, then they anticipate putting him on methotrexate.

Heres to more research on wegeners and hopefully understanding what causes it / finding a cure.

Tell us your story of what your symptoms were and did you have a long road to getting diagnosed or did it happen quickly like my husband who was lucky enough to be diagnosed quickly.

Best Wishes and hope you continue to get better and reach remission very soon.

[Jack]

Welcome to the Forum Christina?
You are unbelievably lucky to have been diagnosed so early and with so few symptoms. ANCA is not a 100% accurate test for Wegener's and most doctors would be uneasy about basing diagnosis on this alone. However, if your case can be controlled using only Bactrim the dangers of side effects are few. Please keep in close contact with your specialist and report any changes to him immediately. Wegener's is not a predictable disease and can change its nature at any time without warning. Tackle any symptoms early and you should not have too much trouble with any luck.

[Sangye]

Hi Christina, welcome to the group. I'm glad you're doing better. I second what Jack has said.

[JanW]

And I third what Sangye and Jack said. I was diagnosed in January of this year, and it is important to notify your specialist if you notice anything out of the ordinary with your health.

[elephant]

I forth Sangye, Jack and JanW said! Welcome, hope the Bactrim continue's to work for you!

[eileenv]

Welcome Christina, I'm glad you had an early diagnosis and hope you continue to improve.

[freakyschizogirl]

Welcome Christina...i hope you continue well on the meds you're on.

Enjoy to the forum.

[chrisTIn@]

Thanks for your replies, staystronglivelong, Jack, Sangye. JanW, elephant, eileenv and freakyschizogirl!

I recognize much of your husbands symptoms, Staystronglivelong! I also lost weight, but I regained it again. I also was sweaty, from time to time, but I thought that that was due to my menopause. Maybe it was an early symptom of Wegener's. I don't know...
I also had trouble with my nose, that is to say, I had little wounds in my nose, they were painfull and sometimes a bit 'bloody'. I never had this before, so I treated it with Q-tips, lukewarm water and vaseline, and hoped it would go away, but it didn't...
I also was very tired, had joint aches and an itchy ear, only at one side however...

Jack, I agree that ANCA is not a 100 % accurate test for Wegener's! My first doctor, an internal medical specialist told me so, but she said that a high level of ANCA, in combination with a sore nose, is a strong indicator of Wegener's disease. To confirm the diagnose, they need additional tests, and they prefer to have the diagnosis confirmed by a biopsy from the affected tissue.
In my case, they took tissue for biopsy from my nose mucous membrane, and of the skin of my arm and leg, where I had small reds spots at that time. None of the biopts showed granulomatosis however. Still the medical specialist that I'm seeing right now says it's 99% sure that I have Wegener's Granulomatosis.

I am lucky indeed that I was diagnosed relatively early. My lungs and kidney's are not involved at this point, and I hope it will stay that way.
My doctor told me, just like you guys say, that I should report any suspect change immediately. The academic hospital where he works has a special emergency-unit for vasculitis patients, such as Wegener's.

I hope you can all understand my writings. Sometimes I have to look in the dictionary before typing anything, as I am not a native English speaker.

[Psyborg]

Welcome to the site, I'm another Limited Weggie I'm just now realizing how lucky I was to get the diagnosis because my ANCA was very low (just barely elevated), but the other symptoms helped clarify it.

Oh and your English seems quite good to me. I'm completely obtuse with languages so I'm always impressed how well people do with English.