Hello from Northern California!

[NikkiNicole]

Hello everyone! I'm in!
My name is Nicole, I go mostly by Nikki. I am 33 years old, married and a mother to 3 fur-babies. I have just been given a "99.5% diagnosis" of Wegener's Granulomatosis. I'll explain why I have this oddness in a moment.
It all started for me back in February 2012. I got a "cold". At least, that is what I thought. It was the worst cold I've ever had. In fact, I thought it was my first ever sinus infection. I've been a healthy person, I get about a cold a year, I never get the flu unless I get the stupid flu shot. So, this knocked me on my tookus. My sinuses were in agony. So much pressure and then, my ears swelled up with fluid and I felt underwater. This lasted forever. One of my salivary glands swelled up too, alarming me. But, my ENT said it would go away on it's own and the fluid would eventually drain. He was the one who did a CT of my face and my sinuses were clear, but my nose was inflamed. Weird. My sinuses were the most painful.
Ha. I ended up back in his office in August begging for tubes in my ears because I couldn't hear and I work as a 911 dispatcher so my hearing is kind of important!!! He put a tube in the left in August and the right at the end of September, still telling me to ignore the salivary gland.
Finally, at the end of October I felt somewhat normal. Until I got the flu shot. November kind of sucked for that. In mid-December 2012 I started coughing like a harbor seal. One night at work I felt like I was having appendicitis as I was in a great deal of pain in my lower right abdomen. I went to the ER, got a CT scan and the doc said no appy but ... I had pneumonia in my right lung. Here's meds ... go home, rest, etc.
It wouldn't stop. I kept feeling worse and worse. I started coughing up blood spotted sputum. A few long bloody noses, etc. I had 6 chest x-rays, three contrast CT scans, and then a PET scan because my last CT showed inflamed lymph nodes. I also had two ANCA blood tests come back high. The PET scan lit up like a christmas tree ........... on my salivary gland and the spot in my lung that they kept looking at.
The pulmonologist I saw wanted me to start meds for Wegener's due to the ANCA test and the symptoms but the Rheumatologist wanted a tissue biopsy so they opted to take out the nasty salivary gland. Before surgery, my platelets decided to take a dive for no apparent reason. By the time surgery came round, they were bcak to normal. Gland came out, off to pathology .............
Docs called and told me it was a plasmacytoma! So Wegener's seemed off the table. I had a bone marrow biopsy to rule out multiple myeloma. Bone marrow is OK for the moment. I have some rare cells there too but in an OK amount. I'll have to be monitored by blood work forever and .... have to have radiation therapy on the area where the gland was removed to make sure all the cells are gone. But, then my oncologist (got one of those too) was saying that the plasmacytoma isn't what was making me ill.
I've been fatigued like mad, still coughing up speckled sputum, low grade fevers. I get dizzy ALL the time. I was working out 5x a week and now laundry makes me feel like I ran 40 miles. The muffled feeling in my ears is returning, my eyes are constantly burning now and I feel pressure in my nasal cavity again. It only feels like I'm getting worse, not better.
So ... I was off to have the spot in my lung biopsied. The local pathologist found granulomas in and shipped my sample off to Stanford Medical Center for confirmation. Unfortunately, they told my docs it would be at least a month before the results came back. My rheumatologist doesn't want to wait a month for them to get back to him and is going ahead with the medications.
Sort of.
I'm on 60mg of Prednisone a day at the moment. I will be on Cytoxan once the radiation is done as they cannot be done simultaneously and the radiation needs to be done. My doc is hoping I'll feel better by the end of the radiation and we won't have to go ahead with Cytoxan as I seem to be a healthier Weg's patient so far .... however, I'm feeling a wee bit worse every day.
Honestly, after telling this tale and reading some others I do feel quite blessed. I feel for so many of you and what you have had to go through before diagnosis. It seems we have caught this before it's really done any damage. I thank my general doctor for ordering the ANCA tests at the beginning of all this in January of this year. Otherwise they wouldn't have had a direction to head.
Whew, that was a long one.
Anyway, I am glad there is a forum like this out there. I've had so many questions in going through all of this. Wegener's was brought up way back in January and I've been reading the forum since then. It feels like I finally have some answers and will do whatever I can to keep this beast at bay once I can get it gone!!!!!

[drz]

Sorry you needed to find us but glad you did. Welcome to our forum. I too was treated for pneumonia when it turned out to be Wegs (GPA now). None of the Wegs stuff is nice or fun but the sinuses often seem first to be attacked and hardest to quiet down. Good luck in your treatment and best wishes for better health soon.

[marylz]

Hi Nikki.
Welcome to the forum. I am also newly dx'd and have found the people here amazingly informative. Hang in there!
Mary

[Dirty Don]

Welcome Nikki...you have arrived at the best place possible for hope & understanding. Like you, I was first diagnosed with pneumonitis, sent home with a Zpak...a week later I was in ICU in an induced coma for 10 days...no one knew what was going on, but one of the docs went on an educated guess and had a lung biopsy sent to Mayo...they nailed it. Like you, I am a fortunate one who has just the sinuses mainly affected. Long story short...a year and half later I am in med remission and feeling as well as I have in over 3 years...knock on wood...ouch! Please ask all and any questions on here AND to your docs. I hear Stanford is good - I hope you have access to Wegs experienced docs...so important! Best of luck to you.

[annekat]

Hi, Nikki, glad to meet you, I lived in N CA for a long time, too (mostly Davis, but some childhood years in Bay Area), am now in Olympia, WA.

Your story sounds so typical, with you going through so many awful things, stuff not usual for you, and the docs coming up with so many different ideas before thinking to test for Wegs. It taking a year or more, even several, is not uncommon. I also had a swollen parotid (salivary) gland which was biopsied but not removed, but it was of secondary concern since I had just presented with a saddle nose, so my nasal septum was biopsied, and the positive WG results came back within a few days. I had previously been in the hospital overnight due to pneumonia-like symptoms, where I had a CT scan of the lungs, the results of which suggested Wegs to the internist overseeing me. My ANCA test was inconclusive, which is common. A couple of years before, I'd had a weird and hard to treat bilateral ear infection, after 58 years of NO ear infections, followed by one sinus infection and ear problem after another, allergy testing and shots, etc., etc. This is a typical story. I'm sorry you had the additional complications with the myeloma and all.... my salivary gland was OK.

Anyway, if you do indeed have Wegs, it is about time you found out for sure, and I know there are good docs in your area to treat you. So good luck with all that, and please continue to post and join in on forum discussions. We are an exceptional group of people here, IMO, and I'm sure you are no exception to that! I look forward to hearing how it all goes for you.

[NikkiNicole]

Thanks for all the welcomes! This is my last night at work for awhile before I start radiation to get rid of the cancer part of this. I'm feeling miserable. I now seem to be having a major hot flash (maybe from the Prednisone?) and my head is killing me. Lots of pain behind my eye, eyes always burning!!! I am looking forward to these things going away. However, with radiation there are all THOSE side effects to deal with!
Maybe after the Cytoxan I'll feel better?!
I am glad to be a part of this forum already. Even before signing up, I've obtained SO much information through reading stories so some of the things coming up aren't too surprising to me. Thank you again ...

[Alysia]

Hi Nikki,
Welcome. I know well the feeling, with WG symptoms, that when they started and not passing away, its feels like they will last forever. desperation. fear. helplessness. but then, some med help. usually pred is working quite fast. so there comes relief and hope.
and meanwhile, I find some relief and hope here in this forum. I am not alone, strugling with this strange illnes...

[mishb]

Hi Nikki,

It's a wonderful feeling when someone actually takes the time to seek a different diaagnosis for you instead of telling you that you have a sinus infection.
I was told this for a good 16 months and was given every antiobiotic and nasal wash under the sun before being referred to an ENT who knew straight away what it was.

Alysia is right about the pred - it should start working within a couple of days. For me it seemed to work overnight especially for the eyes and maybe took a month for the ears. Unfortunately my nose is still cactus

Good luck with the radiation and all other treatments.
I hope things come good for you quickly

[renidrag]

Welcome Nikki, very smart and wonderful people here to help and listen. My WG presented in my lungs and has not visited any other body parts yet. I am also in remission walking the fine line of drug free. I would ask if you have had a bone scan for a baseline in the future as some of our cocktails can cause bone loss. Also you may want the same from an optometrist or ophthalmologist. As DD said a Rheumatologist with vasculitis experience is crucial, if you google vasculitis foundation you can locate a specialist in your area. Get well.
Dale

[Pete]

Hi Nikki,

I too got a "best guess" diagnosis of GPA while hospitalized for a week. The crucial question for me was to ask what else it could be. We decided to treat me for GPA starting with 150 mg/day of cytoxan, 60 mg of pred, and a daily bactrim. The thinking was that if I got better (and I did), then GPA was the correct diagnosis. I hate to think about where I'd be if my diagnosis had been wrong.

At any rate, welcome to "our gang". We're all willing to share experiences and see what questions we need answered.

Be well!!

[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 :hug2:

[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 (http://medicine.ucsf.edu/rheum/)

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 (http://medicine.ucsf.edu/rheum/)

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.

[annekat]

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. Coughing up blood is a bad sign! I'm so sorry you have to deal with the radiation before you can be properly treated. I had lung involvement and was coughing up some blood, not buckets of it , but blood, nonetheless. I was started out on CTX and high dose pred and the lungs started to clear up quite quickly. Some would say you should get on RTX instead of CTX, but I've heard CTX works faster, especially the oral kind. I'm no expert, not at all. But seems to me you could get on RTX later, and thus avoid being on CTX for too long a time. There are definite precautions to take with CTX, and its potential toxicity is pretty serious.