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?

[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.