I was officially diagnosed today with GPA

[Susan55]

Had my appointment today with a rheumy..after all the bad reviews I have read I was so nervous to go.

SHE WAS GREAT and yes she has treated many patients with GPA. I was in her office for over 2 yrs with my brother. After her asking hundreds of questions, full exam and looking back at all my testing etc. Yes, I do have GPA. She is doing more blood work (I will do it tomorrow) and also a CT Scan of the lungs. She said my lungs don't sound good at all. Once she gets all the results back, she will call me and discuss the treatment I will be on etc etc.

So, that's were I am at right now. It doesn't feel real at all! Denial I think. She also said when I had GBS last June , it was NOT GBS it was GPA and she will be contacting the neuro doctor who treated me. She was very very upset when she saw just how many times I had done to the doctor and no one was listening to me...I really really like this doctor and believe I am in good hands. She has already called me at home to ask more questions and see how I was doing, which made me feel so good.
AND, having my brother there to hear it all (as he also at times would say it was just anxiety) lol ya right

Anyways, I just wanted to share that yes I do have GPA and look forward to this group for support and learn as much as I can about the disease.

Thank you everyone

Sue

[Pete]

I guess we can officially welcome you to "the club" now. Finding a doc who knows wegs and is willing to listen is excellent news. Hope she can find treatments for you that are effective and have minimal side effects.

[MikeG-2012]

Sue:

Sounds like you are probably in good hands. The personal touch of calling you at home--nice!

If your lungs have any issues, you will probably get boatloads of prednisone--at least that is what I had to do. If you do, a great book to read is "Coping with Prednisone". It is written by sisters; one is an interstatial lung disease patient, and the other is a pediatrician. It is a good read and explains all the crazy things that happen when on pred.

Good that you brought your brother so the two of you can remember the whole visit. It helped me when first diagnosed to write down all of my questions and answers. Kept them in a binder to go back to them later. My Rheumy even wrote answers to my questions on my sheet for me. Sometimes he even wrote something funny/sarcastic in it to see if I actually read his notes later. (-8

Now that you have a definitive diagnosis, it is time to start getting treated and start getting better!!!

Keep up the positive vibes, that helps immensely!

[LisaT]

Susan, I'm sorry you're joining the Wegeners 'club', as Pete called it, but am vey happy that you at least have some answers and certainty and will be getting treatment now. One question: if she confirmed the diagnosis, why didn't she start you on something right away? She sounds great. AND, she should have known that treatment is urgent and at least started you on prednisone for now while determining what other treatment you will get. Maybe she did and you just didn't include that detail? I hope so! And I hope in your case they will go right to rituximab, which really seems to be the gold standard. Do you have extended health care? Does she have other wegeners patients? I guess that's more than one question, lol.

[Alysia]

Officially welcome to our wg family, Sue. Sorry that you have to. Glad that you have a great dr. It makes a big difference to have weggies friends and a good dr.
I guess she didnt start any treatment yet, before doing all the tests, not to mask the results ?
I LOVE it when docs takes enough time to check us and ask questions and think. I would say that this is one of the best indications for a good dr.
Thanks for the update. Will be waiting to hear what next. Sending prayers.

[Alysia]

. If you do, a great book to read is "Coping with Prednisone". It is written by sisters; one is an interstatial lung disease patient, and the other is a pediatrician. It is a good read and explains all the crazy things that happen when on pred.



Is it this one ?

https://www.amazon.com/gp/aw/d/B00CK503H8/ref=tmm_kin_title_0?ie=UTF8&qid=&sr=

[Pete]

Is it this one ?

https://www.amazon.com/gp/aw/d/B00CK503H8/ref=tmm_kin_title_0?ie=UTF8&qid=&sr=

Yes. That's the one!!

[Jaha]

Sue, I am glad you are getting started on treatment, so you can get better soon. Welcome to the most informative group out there. Please take care of yourself.

[Susan55]

Thank you Pete. The Rheumy has order more blood work and my PR3-ANCA has gotten higher and so many other things out of wack. She said she would call me once all blood work is complete.
Yes, I am hoping I do well with treatment. I'm still in denial a bit. One min it all feels real and then I tell my self, no the dr's are wrong. I am bouncing back and forward with these emotions :(...Still haven't heard yet for CT Scan, hoping it's for today or tomorrow..

[Susan55]

Hi Jaha

I am so happy I am here in this group, feeling blessed as my grand daughter would say :). I'm ready let's start this treatment

[LisaT]

I think it will take a long time to really accept. I think we go through a grieving process after receiving the news. I'm still sometimes in denial. I'll have a good day and think, nah, I'm okay, maybe I don't have it! Then reality always comes back. It is good to have hope and think we can get better. I'm still trying to balance that with acceptance, patience, and having reasonable expectations of myself. Let me know if you find the secret formula. The members on here who have managed the disease for many years seem to have a good handle on finding that balance. I hope to get there. You will too, but first allow yourself time to let it sink in and process all the emotions and accept the change in your life. I hope you get treatment and start to feel better very soon.

[Susan55]

Mike

Yes, it was so personal for sure! I just kept saying OMG she called me and stood there in shock. A Dr. who is finally listening to me and doesn't think I'm crazy.

I plan on reading this book. I've taken it when I get COPD flare ups usually in Dec of each yr and I hate the way it makes me feel. Very agitated BUT I do feel better as in breathing.

The doctor asked me so many questions that my head was spinning. she was writing all my answers down as I was answering her BUT I didn't get to go over all my questions. She said, let's wait for blood work to come back and I will call you at home and I will answer questions then...So I have my list of questions by the phone and I'm ready.

I also started a binder yesterday with all lab results, test results, list of all dr's I see and started a journal that she wanted me to do.

Your Rheumy sounds like a good guy and a great sense of humor. This Dr. I saw, when she first came in the room it was like she had attitude (my brother told me before going in, if she has attitude just let her ask the questions and just answer and then your turn. I did just that and at the end she was smiling and very helpful in telling me about the disease GPA. She totally changed her tone and was nice to talk to and just kept saying "I'm am so sorry no doctor has listen to you" now that felt good to hear.

I see the sun coming out :) a good day for my walk and turn on the music.

Thanks again Mike and have a good day

[Susan55]

You worded it so well. No, it doesn't feel real to me yet. When I went for my walk yesterday and then the tears just started and thinking wow I have GPA. Then the next minute I am in a daze and can't remember what stores I just passed etc. I'm everywhere mentally with emotions right now. Trying my best to be positive and strong.

I hope I find that secret formula and if I do I will let you know. When I read the stories of how some members have battled this for years makes me smile, the inner strength and just so positive. So, I just keep reading the stories over and over to help me go that one more hour in the day.

Yes, I have to let my self process all the emotions and accept it..BUT I am blocking it all out/making my self numb. I started to journal yesterday and hoping this will help me in accepting it and moving forward.
I just want to start treatment so bad, but also scared at the same time.
Today is a new day and keep smiling and enjoying all the little things in life :)

[Susan55]

Hi Alysia
Thank you for the warm welcome to the group :) Not really sure why she hasn't started treatment. She said she wanted blood work and CT Scan done asap, then she would call me about treatment. I would like to meet with her in person in regards to the treatment, but maybe a phone call is quicker then waiting to go back to her office again. Oh, time she took for sure, but I wasn't left with much time for my questions. So, I have my list ready when she calls.
My ANCA was 1.9 july 31/17 and yesterday it was 2.2..it went up a bit and have blood in my urine and CK enzymes are 165...I am NOT sure what all this means.

But all other test are normal. I just want treatment to start!

[Alysia]

Sue, I guess she wants to see all the results in order to choose the best treatment. C-anca's scale in Israel is different so I can't tell much about your numbers but it seems that wg is active. They didn't check my CK.

Anyone else around here knows what it means ?

Hang in there and please update us.

P.s. as for accepting our life with wg, Faith plays the most important part in acceptance, for me and for some others. But according to the rules of the forum we are not allowed to discuss here religion or politics, so I will stop at this point.

[Susan55]

This week end can't go fast enough for me. I just want the call from my Rheumy to know what medications to start on. Hard day yesterday with pain and swelling in feet and legs. I am so so cold the last few days. Feels like a cold coming on :( Not sure if I am suppose to let the dr know if I feel a cold coming on. I will call her office tomorrow and let her know.

[elephant]

So glad you came on this site to share your story. I'm looking forward that you get the medicine soon. Glad she ordered labs and ct scan. Hang in there!!

[Susan55]

Thank you Elephant

I am hoping tomorrow is the day she calls me to start treatment. Today I am under the weather a bit..I just to call it a COPD flare up but not sure what it's called with GPA? GPA flare up? It hurts so bad and SOB. Took 50 mg of steroids yesterday and today but chest is still throbbing lots. So, fingers crossed tomorrow is the big day..let's do this :)