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    Red face New Member

    Dx'd in August 2016 with GPA - Prior to this diagnosis, I was a healthy, active, health conscious 54 year old. I had been dx'd with seronegative RA 10 years ago that was managed easily with minimal medication and in remission. (We now think that I never had it...but Wegener's all along). We had been in Colorado on vacation, came home and got sick. Tested positive for the flu. The cough got out of hand, so we ended up at the ER. Chest XRay revealed pneumonia (It wasn't). Admitted to the hospital on the weekend, so had to deal with the interns. They tested me for everything from A-Z. One night early on, I lifted the sheet and noticed that my leg was swollen to three times its normal size...blood clot. By the time the surgeon got involved, he told my family that he was unsure if it could be saved. Yes. But, thankfully due to a skilled surgeon and the prayers of family and friends, it was saved and I now only deal with some nerve damage. It was determined that my lungs were full of blood, so I was intubated. Due to the DVT, I had to be placed on blood thinners which made the bleeding in my lungs continue. I eventually came off the vent, went to rehab only to have to return to be intubated again. The doctors decided to place a IVC filter to prevent a clot from reaching my heart. I had two rounds of plasmapharesis with 4 units of plasma and 6 units of blood. High doses of Prednisone and Rituxin were the drug therapies chosen. After 31 days, I got to go home 25 lbs lighter. My husband was able to take another month off of work to care for me. I left the hospital in a wheelchair due to the muscle atrophy that occurred from being in the bed so long. I experienced the typical prednisone side effects that I hated...moon face, mood swings, emotions on a rollercoaster, heart rate acceleration, shortness of breath, and my food didn't taste normal. I have now tapered down, but may be going up soon....I have a feeling. My hair started falling out in November due to telogen effluvium. I have lost 2/3 of it and have to wear it up for it to look close to normal. But, it is already growing back..so it's ok! That is one of the many things I've learned since August of last year...gratitude. I've always been a positive person and thankful for my family and health, but this has made me even more so. This was my second attempt at posting this...I wasn't ready the first time. Too emotional. Anyway, I'm here now and hope I can be of help to someone new that was as scared as I was at diagnosis. I'm still scared, but have learned to live with my new normal.

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    Thank you for sharing. I was diagnosed in 2009 and in remission since June 2010 with one small bump in the road. Others will be along to welcome you also, best to you.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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    Wow, such a tough onset and journey. Thanks for sharing your story and welcome to the forum. I hope that the worst is over. It seems that you got the best treatment possible and you sound like a strong lady. Sending prayers ❤ Please update us.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    What a ride you were on. Glad they were not only able to save your leg but save you also. What are the meds are you on now,what dose of pred. Be very careful when weaning down on that, you can easily get a flare if you go to fast. The body will tell you better than the dr. Welcome to the forum,sorry you had to find us but there are so many good people here and since it is world wide ( and most of us on pred ) there is usually someone to talk to 24-7. Glad you are home and your hubby is able to help.Keep us updated or just come on here to chat..Take care
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Thank you and the others that have replied. It's nice to talk to otherz that have an idea of what I've been through. I came home from the hospital on Sept 1 on 80mg... tapering down to 2.5 this month, but went back up to 10 when I developed a cough, now going back down to 5mg. I just had a Rituxin infusion last Thursday. My ANCA scores taken that day showed normal on C-ANCA and P-ANCA, but the Proteinanase PR3 test was positive for the first time. I had asked on another thread what that meant, and have been told that it could mean nothing or could mean that I'm either having a flare or about to. Hoping that the Rituxin infusion I just had would stop anything on the horizon. What is usually the course of action for a flare?

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    That seems like an awful quick drop on the pred. I was dxed in 2011 with involvement in my lungs. Not as bad as you by far. I too was perfectly healthy but was rear ended while driving back from a health food store..of all places !! But I went to get cked at the hosp. and they did a ct scan that showed I had several nodules in my lungs. At first they thought I had cancer but they had to do a partial lobectomy to get the dxed of wg. I was put on high does of pred, cytoxin,Bactrim and folic acid for 6 months. I then went into remission and have been ( thank God ) since then. I was given 1 round of rtx that didn't go well so never had another.So now the only med I am on is 5 mg of pred and my dr at Cleveland Clinic said I will be on it for life since my adreanal glands have completely shut down and I am not on any other maintence drug.
    Is pred the only drug you are on ? The rtx infusion will take awhile for the full effects to kick in so if it is a flare you may want to ask your dr. about upping your pred again. Several other people here also take methotexate Sorry I can't answer the PR3 question.Hopefully someone will be able to answer that for you. Good luck to you
    Life isn't about how you survive the storm, but how to dance in the rain !

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    This is my third series of Rituxin. I have 1g, in two infusions two weeks apart every 4 months. I suspect I may have to stay on the Prednisone due to adrenal fatigue also. My cortisol was a little off before all of this took place. Aside from all of the crappy side effects of the Prednisone, I felt really great while I was on the higher doses. I guess we need to find my happy place. Above 10 is not gonna be it.

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    Hi Debbie. The irony of your onset happening after a trip to the health food store is almost too much to bear! Can I ask what happened with the Rtx that you said "didn't go well"? Glad to hear you are doing well.

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    I am sorry to hear that your onset was so serious. What a wake up call for us "health fiends." I am in my mid 60's, have exercised every day for 30 years, but in the last year, my life has been a continuum of sinus infections, parotid gland infection and other weird URIs. And exercise has often taken a back seat. Some days I think my healthy lifestyle has prevented a serious onset, but after reading some of these posts from other healthy individuals, a serious onset can come suddenly out of the blue. I've always cherished my ability to exercise, play the piano, etc., and lived life to the fullest. One of the scariest things about Wegs is the loss of control of a lifestyle I appreciated and loved so much. I hope you continue to improve.

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    Quote Originally Posted by lovetoswim View Post
    Hi Debbie. The irony of your onset happening after a trip to the health food store is almost too much to bear! Can I ask what happened with the Rtx that you said "didn't go well"? Glad to hear you are doing well.
    Hi lovetoswim..Yea that was bad timing for me but I would have never have know I was sick unless the accident happened.
    Since I only had 1 infusion I didn't know what the "norm" was supposed to feel like afterwards, But I just wanted to sleep for about a week.The problem was the from the facility I had it done at. It was their first time giving a rtx infusion and it was getting close to their quitting time for the day so they pushed the remainder of the iv in too fast. I was fine throughout the treatment besides that.
    Life isn't about how you survive the storm, but how to dance in the rain !

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