Hello from Northern California!

[Marci]

As Pete said "Welcome to our Gang". I'm new here too and have learned so much just in my short time here. You have been through alot and I hope your meds start to work for you. Thanks to this support group I finally have my first appt. at the Cleveland Clinic tomorrow. I'm excited but nervous also. I wasted time with the first doctor I went to (total Dud) and this group put me on the right path.

My daughter lives in northern California (Eureka). I'm hoping to visit her this year. She's being treated for her cancer at Stanford and is one year in her treatment plan and has one year to go. She is doing very well now and her Dad and I are so relieved. She was one sick girl at the beginning.

[beeinformed]

Hi Nikki,

I have been seeing for the past four and half years, an ocular immunologist (who treats and specializes in inflammatory symptoms of the eyes) and would highly recommend that you see this type of specialist for your eye symptoms. I see a wonderful eye doctor (who because of his specialization in autoimmune symptoms of the eyes) was able to diagnose the cause of my eye symptoms as I had lost seventy to eighty percent of my tear glands within twenty-four hours and also had concurrent iritis (inflammation of the iris) and had I have gone to him sooner, he would have recommended appropriate immunosuppressant/anti-inflammatory medications, which would have helped my eye symptoms tremendously.

Below is the name of an ocular immunologist in your area:

Ira G. Wong, MD, MS Background | Publications
Francis I. Proctor Foundation Website
95 Kirkham Street
San Francisco, CA 94143-0944

Clinical Professor of Ophthalmology
Chief, Uveitis Service
Stanford University Medical School
Stanford, California
Tel: 415-731-1075 | Fax: 415-502-2521 | Email: [email protected]

I would like to add one piece of advice that was given to me years ago, which is to have a good doctor who will take you seriously (as you can always get the other kind!).

I hope you feel better soon.

[NikkiNicole]

I already feel so much more informed and aware in only a few days of posting. My cough seems to have morphed. I wake up feeling like I'm gonna choke if I don't cough. Today I was talking and wham-o, I was coughing and gagging, almost vomiting my lunch.
my rheumatologist is still hesitant on GPA because he says I don't have any of the other issues. I've seen so many people here who only had GPA symptoms in one area. My lung nodule showed the granulomas and I have had the cough for months and my year long rhinitis last year with my ears being clogged. He still won't connect last year to this year. I don't get it. I fear if I don't push it, I will grow to have involvement somewhere else!
I feel miserable and fatigued everyday. This isn't normal. I wish I could have treated my GPA with everything first and then did radiation. When those side effects kick up I'm gonna cry!!!

[Dirty Don]

Try sugarless cough drops and/or Entertainer's Secret Throat Spray (online only). My rheumy had no answer for the cough immediately, so she recommended keeping my sinuses and throat moist as much as possible. For the sinuses, a good sinus rinse helps a lot...I don't like the full washes but I do use Ocean, a saline nasal spray, which helps also. Once the
WG meds are allowed to take hold, some of the coughing/stuffiness will clear, but not all of it...there are so many variances to all our conditions...hang tough!

[annekat]

I already feel so much more informed and aware in only a few days of posting. My cough seems to have morphed. I wake up feeling like I'm gonna choke if I don't cough. Today I was talking and wham-o, I was coughing and gagging, almost vomiting my lunch.
my rheumatologist is still hesitant on GPA because he says I don't have any of the other issues. I've seen so many people here who only had GPA symptoms in one area. My lung nodule showed the granulomas and I have had the cough for months and my year long rhinitis last year with my ears being clogged. He still won't connect last year to this year. I don't get it. I fear if I don't push it, I will grow to have involvement somewhere else!
I feel miserable and fatigued everyday. This isn't normal. I wish I could have treated my GPA with everything first and then did radiation. When those side effects kick up I'm gonna cry!!!

Nikki, you live in a area where there are GPA/Vasculitis specialists, so if your rheumy isn't one, I'd suggest you get on the Vasculitis Foundation website and try to hook up with one in the Bay Area. I think there may be couple of them listed there. It doesn't sound right that your present rheumy is discounting the possibility of GPA, when they found granulomas in your lung, and with your other issues like rhinitis and clogged ears. You are lucky to live in an area where there ARE specialists.

I know what you mean about learning a lot on here in a short period of time. I learned so much before my dx that I marched right into my ENT's office, pretty much on my own, and got a nasal biopsy with no prompting from anyone. It was conclusive for GPA.

I'm sorry you feel so rotten, and if you do get on a regimen of Wegs drugs, you won't feel better right away, but before long, you will notice a difference!

[Alysia]

Hi Nikki,
a lot of good advices here,
and from me - big hug to you

[Jaha]

Nikki,

Welcome to the best advisary group ever. I'm a little concern also about your rheumy not being able to see what's up with you. Please seek out a true Wegs rheumy, most of the larger vasculitis centers have teams that work to come up with the correct dx. Good wishes to you!

[Marci]

Nikki, I just checked the info listed for California that I printed off from the Vasculitis Foundation informational handbook and it shows one in the San Fran area. University of California - San Francisco Division of Rheumatology UCSF | Department of Medicine | Rheumatology Home

Listen to the people on here about getting to a team that knows WG. I finally did and it was the best decision I made this year. I wasted a whole month or more with a doctor who talked big but did me wrong.

[annekat]

Nikki, I just checked the info listed for California that I printed off from the Vasculitis Foundation informational handbook and it shows one in the San Fran area. University of California - San Francisco Division of Rheumatology UCSF | Department of Medicine | Rheumatology Home

Listen to the people on here about getting to a team that knows WG. I finally did and it was the best decision I made this year. I wasted a whole month or more with a doctor who talked big but did me wrong.

The specialist at UCSF, I believe last name is Chang, has been mentioned positively on this forum, as have one or two docs in the Stanford area, who could be listed on the VF site as being in Palo Alto or another nearby area. Nikki, it sounds from one of your posts that you may be aware of these docs. I am a procrastinator, but don't be like me, get on the phone and see what is the earliest appt. you can get with one of these docs. Even if your biopsy result is not in, that could be forwarded to them as soon as it is. They would be interested in knowing about the previously-found granulomas in your lung and the other issues you are dealing with.

I have relatives in the Bay Area I could stay with if I ever wanted to see one of these docs, which is why they are of special interest to me. But it would require a 750 mile road trip, unless I could afford a plane ticket! (And I hate to fly.) There are no true specialists in my area. For the time being, I'm doing pretty well without one, but always keeping possibilities in mind.

[NikkiNicole]

I am definitely going to consult the specialists. Today is worse! I'm coughing up more blood, I had a low grade fever, I've had a major headache all day. I feel sooooo run down (some of that is from my radiation). I am on 60mg of prednisone daily and was due to taper next week. I cannot start CTX until radiation is done but I will be taking it. Thank you, everyone for all your great advice.