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Thread: New to Wegener's, new to the forum

  1. #1
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    Default New to Wegener's, new to the forum

    I am already so thankful for this forum because of everyone's friendliness and all the info that is available. I'm learning a lot!
    In October 2017, we lost our home and everything in it to the Tubbs wildfire, in Santa Rosa, CA. It happened in the middle of the night so we had to leave immediately with our pets and just the clothes on our backs. No time to pack a thing. A few months later, the tops of my feet began to hurt. By June 2018, I had pain throughout my feet and also my legs. I thought it was due to my weight and decided to retire a year earlier than planned. Then we moved to Paradise, CA. We lived in that home less than 6 months before it was burned to the ground in the horrendous Camp wildfire in Nov. 2018. Once again, we escaped with our pets but had little time to pack. At least this time we grabbed all our technology!
    But my story officially began Oct. 2019, when we were having a sleepover with our granddaughter so our daughter and hubby could celebrate her birthday. Our granddaughter was 3 at the time and a little spit fire. "NO!!!" was her favorite word. By dinner, I had a splitting headache. The next day, our granddaughter left but my headache did not. I had headaches on and off through Nov. and Dec. At times I was taking 1200 mg of Tylenol a day to get some relief. I thought it was the stress of the wildfires, that we had just moved for the 5th time, and were involved in a lot of projects for our new-to-us house in Chico, CA. Right after the New Year, my right eyelid began to droop so I went in to my primary care nurse practitioner. She sent me to the ER for an MRI and they admitted me for 2 days. My pupils were not the same size and the right one was pointing a bit odd. The MRI showed 2 blood clots in my brain (left transverse venous sinus and inferior sagittal venous sinus). The hospital called in a wonderful neurologist who explained what was going on. I was put on Coumadin and urged to get a CT scan of my torso. Since there was no reason I should have blood clots (unprovoked), my neurologist thought that I may have cancer somewhere in my body that triggered them. The CT scan showed multiple masses in my lungs and a lymph node that was in the high normal range. In his report, the radiologist wrote that it was most likely multiple areas of pneumonitis and metastatic disease but felt I should get a biopsy to be sure. When my nurse practitioner told me the bad news, she referred me to an oncologist and then promptly dropped the ball. She did not even give me an RX for antibiotics. She said the oncologist would take over, schedule the biopsy etc. But the oncology department said those things were her job. As the buck passed back and forth, so the the days. Meanwhile, I felt sicker and sicker - just awful shortness of breath, horrible fatigue, and pain everywhere. I said to my husband, "just take me to the ER." And it turned out that this was the best thing that could have happened. The ER doc called in a fabulous pulmonologist who put me on IV antibiotics and solumetrol. I immediately began to feel better. I stayed in the hospital for 3 days for tests and by the end of the visit, my pulmonologist felt it was Wegener's (my very experienced nurse at the hospital agreed with him) and not cancer. We got the pneumonia cleared up and I had my lung biopsy, which turned out to be inconclusive and didn't confirm Wegener's but ruled out cancer. My pulmonologist sent the biopsy to Univ. of Calif., San Francisco but we still have not heard back. All my symptoms and blood work point to Wegener's as my ANCA and ESR were through the roof. Now I see a rheumatologist and he agrees with the pulmonologist that it is Wegener's. Soon I will have Rituxan infusions once a week for four weeks (waiting for insurance approval). Meanwhile, my symptoms are controlled pretty well with 50 mg a day of Prednisone. I am just so happy to not be in chronic pain, to not fall asleep at the drop of a hat, and that our granddaughter has turned 4 so we don't hear "NO!" quite as often.

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  3. #2
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    Default Re: New to Wegener's, new to the forum

    You have been through an almighty grinder. Best decision ever was to go to the ER. So happy you didn't just sit and wait. You finally got some good luck there in your physician and nurse! Great you're feeling better. I hope the rest of the areas of your life are better too - did you rebuild in the same place or move on somewhere else? Rituxan is great although I haven't had it myself, others have very positive reports.

    Welcome and thanks again for the donation!! Very much appreciated.

    Cheers
    Andrew
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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  5. #3
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    Default Re: New to Wegener's, new to the forum

    Oh Susan, you have been down a very rough road. Many of us have said that stress has brought on a flare. I was diagnosed after my husband underwent three life threatening surgeries. I would not be surprised that your treacherous fire experiences lowered your immune system.
    Once you get on the right medication program, you should start to see the sunshine again. I have a good response to Rituxin. My Medicare plan covers mine. Some plans do some donít.
    You came to the right place to ask questions or just share. This disease comes in all shapes and sizes. Many of us experience different symptoms, and respond differently to medication. Just reach out to us for support.
    Although we are not doctors, I feel I have earned a mini Wegeners degree.
    Now that you have been diagnosed, you should already be feeling better. Knowing the enemy is half the battle.
    Glad your granddaughter has left NO behind.
    Masha

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  7. #4
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    Default Re: New to Wegener's, new to the forum

    Thanks for your encouragement, Masha!

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  9. #5
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    Default Re: New to Wegener's, new to the forum

    And thanks to Andrew as well. I begin my first Rituxan infusion in a week.

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  11. #6
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    Default Re: New to Wegener's, new to the forum

    Oh my goodness! Susan, you have been put through the ringer! I say quite often Wegeners is not for the faint of heart, hearing your story reaffirms my belief. I know you are new to this diagnosis but I believe you will kick itís butt! Thinking of you and your fam!


    Sent from my iPhone using Tapatalk

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  13. #7
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    Default Re: New to Wegener's, new to the forum

    I just finished my second of four Rituxan infusions. They both went well. I've been able to cut my prednisone down a little after each infusion without my symptoms coming back so that must mean it's working!!

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