Hi from Sacramento

[alirka]

Hi all,
I'm Stephanie, and I was diagnosed with GPA 8 years ago the end of this month. It has been up and down since then, and though I'm able to live a fairly productive life, it never really got back to normal. In 8 years, I've never once been off meds. Flare-ups are frequent, though most have been mild and manageable. I am here because there's no support group in Sac that I'm aware of, and I am oh-so in need of someone to talk to. I wish you all the best.

[vdub]

HiHi! And welcome! I'm sorry you had to find our little group. We have members from all over the world, so we're pretty much a 24/7 service organization. There's always someone to talk to.

How long have you been dx'ed and what led up to it? Do you see doctors in Sacramento or go to SF? I lived in Sac for 2 years while going through flight training. Nice town.

[NikkiNicole]

Hi! I am Nikki. I'm from Santa Rosa. If you join the Vasculitis Foundation there are meetings in Sacramento. I've thought about going sometime. Although,. I am not sure there are really support groups there versus getting info, etc. But, I am sort of close by! I'm over in Sonoma County. Not many people around here that have this and ... it seems my doctors still aren't 100% on top of things as I have never really experienced any kind of remission. The methotrexate is making me miserable and I am going to my rheumatologist on Tuesday to discuss Rituxan.
Welcome, as I said on your other post. This will be a most valuable asset to you!!

[annekat]

Welcome, Alirka! I lived in Davis for 22 years and did some of my schooling in Sacramento. My dad taught and researched at the UC Davis med school including the teaching hospital in Sacramento. I'm curious whether there is anyone there qualified to treat Wegs. I also wonder if I'd have gotten Wegs if I hadn't moved up here to Olympia, WA. No particular reason, just wondering, since getting it or not seems to depend on a trigger, etc. If I'm predisposed to it I still could have gotten it in Davis, although I do have more awareness of people up here having it and other forms of vasculitis.

In any case, I'm really glad you found the forum, as it is the best form of support and info I know of, not to mention friendship with other Weggies and a place to rant, tell stories about anything (in the off topic section) and ask any questions. There are also some good Facebook groups on Wegs and Vasculitis and could be some for people in your area. Good luck, and keep us posted on how things are going!

[mrtmeo]

Hi Alirka,
I am glad you found this group and if you would like to find a support group near you, contact the Vasculitis Foundation here
Contact Us (http://www.vasculitisfoundation.org/about/contact/)

[Thinker]

Welcome Stephanie,

I'm glad you found our support group, it's a wonderful group of understanding and helpful folks. As Annekat said, there are also some facebook groups if you research online. Even though I don't post often, I still check in often and feel like this group is one of my anchors in living with this disease, because like you, there is no one else that I know who has this disease that lives near me.

[Debbie C]

Hi Stephanie and welcome to the "family". Well you will never be without someone to talk to on here. So ,you have had this for 8 years,what kind of meds are you on now ? I just noticed that you posted a couple of other times so probably said your story then and I just missed it. But welcome. :)

[alirka]

Thank you all. I got sick in 2004 when I was 26, went undiagnosed until 2007, when I got really really sick. The X-ray that led to my diagnosis showed four tennis ball sized holes in my lungs. That led to 6 months in bed and a lot of other scary stuff. I have been under the care of UC Davis' best rheumatologist since then (to answer your question, Annekat, he is one of the best for WG in Northern CA). I'm on cellcept and the occasional round of prednisone because the meds (until recently) have been working, and my case was pretty severe. I'm predisposed to frequent flare-ups, and we're saving Rituxan as a last resort if it stops working. I had almost 2 years on cytoxan at first (so, so bad), and then we switched me to methotrexate, which didn't work at all. The cellcept has been pretty good to me, considering. Like I said, the WG hit my lungs pretty hard, and my sinuses too. I'm fortunately that my kidneys are safe so far, and that my lungs have had a chance to heal up. I still have sinus issues. My support system has been my doctor, my parents, and my eternally patient boyfriend. It's tough because I hate to worry my parents, as they have so much else to deal with, so I try not to let on unless things get bad. (They still worry... parents... ;) go figure). I came here because I've been fighting the good fight for so long that my resolve is wearing very thin, especially with this latest flare-up. I need help, and people who understand. I thank you all for your warm welcome, and I look forward to supporting this new family as best I can. Much love, and good health to all.
-Stephanie

p.s. mrtmeo - I have contacted the VF and am awaiting information on meetings. thank you for the info.

[annekat]

Stephanie, I'm glad to hear there's a good WG/Vasculitis doc at the UC Davis Medical Center. I wouldn't think otherwise, except that all we hear is that there are certain WG specialists in the US and that the west coast is lacking in them. Since then, I've found out there are more good WG docs out here than those listed on the Vasculitis Foundation website: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/) . I've recently become aware of this other list compiled by VPAN: Vasculitis Patient Advocacy Network - Doctors-United States (http://www.vasculitispan.org/doctors-united-states) which solicits suggestions from patients as to docs they are happy with and confident of who might be added to the list. This way we can get a list which covers a lot more states and localities. We have heard of some good docs in the Bay Area and other parts of California, but not in Sacramento. Perhaps you'd like to submit your doc's name for inclusion on this list. Otherwise, if you don't get around to it, I'd be interested in knowing his name. He might be someone I've heard of, and I might even find myself back in Davis or N. CA some day, who knows? Or someone else in the area could benefit from his expertise.

[mrtmeo]

Wow, Stephanie,
4 golf ball sized holes in your lungs! (oops, typo, Tennis Ball sized)
That is really scary and you have been thru alot.
Don't ignore symptoms because the earlier you can be treated the better the outcome.
If your maintenance drug stops working, don't hold off.
It is always better to be safe than sorry.

[Dkathleen]

This forum provides an amazing amount of support and information. I hope this is a only a temporary setback. Take care.

[Mas78]

Belated Welcome Stephanie.
It appears we are about the same age, I was 22 back in 2000 when I got Dx'd.
I hope that things start turning more in your favor soon, I know I am one of the luckier ones that after I went into remission I haven't ever gone back on a treatment plan for Wegener's so it is possible.
It looks like you are getting some good responses for leads in finding more specialists to help you out.

Glad you found the "group"

[alirka]

My doctor is Stanley Naguwa, MD, with UCDMC in Davis @ the Cowell Blvd facility. However, he is retired and is probably not taking new patients. He has stayed on a very minimal basis to keep a handful of his "special" patients, but he has trained another rheumatologist to take over his other patients. If I can find out her name, I will let you know.

[Jayne 14]

Welcome to the gang
And yes it is like a family
Good times , bad times & love / support / advice
We are here for you & all of us


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