New Member- Diagnosed in May 2002

[Kunka123]

Hello,
i was diagnosed in May of 2002. I am male 47 and live in California. I have been on just about every protocol that is used for WG ie. Cytoxan, Methotrexate, Imuran, back to Cytoxan, Cellcept, and now I am on Pulse Cytoxan.

I am happy to have finally found a support site that I can talk to other WG patients about our desease. I am currently a Professional Farrier and live a fairly active life. I am interested in how others are managing their WG. I haven't been able to talk to anybody about it, except for my doctors.

I hope all is well with everyone. Take care.

[misskay]

welcome aboard! I'm fairly new to the board and WG, so I look forward to talking with you. :)

[Lola]

Welcome to the group, Kunka. I am sorry that it has taken all these years for you to find someone to talk with. What part of CA do you live in? You have a physically challenging profession! Are there times when you just don't have the stamina to tackle those big feet? Are you taking prednisone?

There is much to learn on this site. I am still in the learning stages, myself.
Cheers,

[Jack]

Hi Kunka,
You will find lots of people with knowledge of the disease on this forum plus many who can offer sympathy, support or whatever. We all know what it is like, but everyone's experience is different.
Because of the varied nature of the disease and the way individuals react to treatment, there is no exact protocol for treatment. The life saver was the discovery of the combination treatment with immuno-suppressants and steroids, but even this is not totally universal. A fairly common regimen is Cyclophosphamide (Cytoxan, ctx) plus Prednisolone to start off with and perhaps return to if you have a relapse. This is followed by Azathioprine and Pred and then perhaps Cellcept and Pred as the disease is brought under control. However, there are various other drugs in use and also a lot of support drugs to counter side effects and infections.

Feel free to ask any questions you can think of or contribute in any way you wish or even just have a good moan. We all do that from time to time!

[elephant]

Hi Kunka, sounds like you have not reached remission. Do you see a Wegeners Specialist? I go to Cleveland Clinic in Ohio and it has made a world of difference. What are you symptoms now? I am quite the nosey one, well cause I'm a RN....can't help it!

[pberggren1]

Welcome Kunka:

I was diagnosed in April 2003. We would be happy to answer any questions you have. Just ask away and feel free to vent as well. Wegs is a serious disease and very difficult to deal with.

If you like to talk on the phone you can call me or I can call you. I have North America long distance bundles on my phones. My home number is: 306-971-7086 and my cell is: 306-774-5801.

God Bless,
Phil Berggren

[Sangye]

Hi Kunka, welcome to the group. I have the same questions as the others! But my main job in the group is to nag you to get to a Wegs specialist.

So, do you have one? :D

[Kunka123]

Yes I am on Prednisone, now 35mgs daily and will drop to 30mgs in a couple of weeks. I do have a pretty physical job but I love it. I am retired Army and was in the Infantry for quite awhile. I just have to pace myself. I live about 30min south of Sacramento. I was just wondering if I am a normal patient (if there is a normal) or are most WG patients less or more active.

[Kunka123]

Yes. I am a Veteran and the VA Hospital at Mather, CA is great. They have a very good grasp on Wegener's. I am very happy. Of course I have only had 2. This one and the one before.

[elephant]

Kunka123, it depends on long it took for you to get diagnosed ( damage done) and the treatment you received. Wegeners hits everyone differently. I would say despite all the damage and all the surgeries ( a hell of alot) I am active.

[Sangye]

Yes. I am a Veteran and the VA Hospital at Mather, CA is great. They have a very good grasp on Wegener's. I am very happy. Of course I have only had 2. This one and the one before.
Kunka, please check out this thread: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/986-what-newly-diagnosed-need-know.html

I suggest getting a VF consultant on your case as soon as possible if you can't be treated at a major center. There is a Wegs specialist in California--Sharon Chung-- but I don't remember where she is. San Francisco maybe?

[pberggren1]

Yes, Sharon Chung is in San Francisco I believe. Her number is: 415-514-1673.

[DEE]

welcome Kunka
listen to all the people above and you wont go far wrong they have all helped me in their individual way take care DEEx

[Jack]

I was just wondering if I am a normal patient (if there is a normal) or are most WG patients less or more active.
That is the difficult thing with Wegener's - there is no Normal. The symptoms vary widely, the level of damage caused varies and so does its response to treatment. We have one member who has climbed Mt. Everest whereas I am currently in a wheel chair.

[JanW]

And I will see the one who climbed everest today at the conference.

Sharon Chung is at UCSF. She is here also. She just joined the VF list of specialists.

Everyone's right - there's no normal. 10 percent of patients always have active disease as well. As for drugs, new standard of care is no more than 6 months on ctx @ any one time.

[Kunka123]

It took about 14 days to diagnose me simply because I ignored the symptoms, (spontaneous nosebleeds, and the RA). When I finally went to the hospital the doctor admitted me immediately for WG. I spent 10 days in the Hospital before all of the doctors concerned finally agreed that I did in fact have WG. During my initial stay i had a Bronchoscopy and a Lung Biopsy. All of which were sent to the larger "Research Hospital". I didn't test positive for ANCA markers until about 2 years after initial diagnosis. Currently I am at 52% kidney function.

[Jack]

It took over a year for my diagnosis. Lots of damage already done by then! :(

[Kunka123]

I will call Sharon Chung ASAP. I am concerned that i may or may not have the fortitude to stick with a new regime. I do like my martinis and i usually eat what i want. I try to control the amount of food i eat and i don't binge. But, i think it might be time to start a new plan.

[elephant]

I had this disease since I was 12 yrs old, I'm 45 yrs old now and diagnosed July 2008! I have a lot of surgeries and damage, but I am alive and kicking!

[DEE]

i was diagnosed may 2009 after two years in and out of hospital doc not knowing what was going on
when they looked at medical records and biopsy over several years they seem to think i could have had it a lot longer than first thought
it explians alot of the health problems ive had aleast over the last ten years DEE x

[Kunka123]

I am fortunate that I was diagnosed so early. My angels were definately on duty.

[pberggren1]

We will all help you with your new plan Kunka.

[Sangye]

I will call Sharon Chung ASAP. I am concerned that i may or may not have the fortitude to stick with a new regime.
Keep reading other people's stories on here, Kunka. That'll motivate you to keep the Wegs in check.

[Kunka123]

thank you all for the warm welcome! I am very glad that I have found you all. My wife will be even happier. She usually gets the brunt of my "roid rage" and is constantly hovering over me and worries constantly about any and all changes (aches, pains, noises, and cuts and scrapes). Hopefully this site will ease her concerns and answer a lot of her questions. Again, thanks for the very warm welcome.

[pberggren1]

Encourage her to come on the site as well. She can even join under a different name.

[marta]

I am fortunate that I was diagnosed so early. My angels were definately on duty.

Hey Kunka, I feel exactly the same with my experience. I really feel like I had angels on duty, I still think I have their handprints on my shoulders.

Then I found this site and it's been great. I go on it an look at my husband (who is also on here quite a bit as well) and tell him that I'm checking out what all my new friends are doing.
It's been really good for me and I've gotten a ton more from here than from my docs (which is not knocking my docs, I just don't see them that often, and when I do I don't go in with a mile long list of everything I've been feeling each day, but here I can get reassurance that the odd feelings are normal). This is an amazing group of people and I feel lucky to have stumbled onto here.