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Thread: Hello, everyone! Newbie here...

  1. #1
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    Default Hello, everyone! Newbie here...

    Hello, my name is Julia, I'm 25 yrs old. I live in Albany NY with my hubby Andrew. I found this website a while ago, but had mixed feelings about accepting my wegs...I still do and do not want to associate myself with it, but when I had it really bad and scary, I'd come here and read how people deal with it, countless number of times this site had helped me...and now, after almost 3 years....I know...creeper... I decided to register...
    I got diagnosed with Weg/GPA on Jan 10, 2012, I was 22 at the time. I was absolutely healthy. It all started in September, 2011, my left eye got that red line..from the corner to the iris, which later, after a few excruciating weeks, got properly diagnosed as scleritis. The doctor, eye specialist, told me to do a bunch of labs, because scleritis doesn't just show up. So I did them all...ANCA test, was among them. So in October we got my lab work back and ANCA was elevated. The eye doctor told me to go and see a rheumatologist, before she can do anything about my eye, so I went immediately to the rheumatologist. All he said was "I've seen patients with wegeners, and i know one when I see one, based on ANCA alone I can't simply diagnose you, you don't have wegener's treat scleritis with prednisone". He also ordered an X-ray of my lungs just in case. So that day, sometime in November 2011 I got introduced to steroids (40mg) and was astonished with their powers and how fast my the inflammation from the eye went away. My ophthalmologist and I were treating my eye with steroids, tapering slowly, I was also in college, finishing my fall semester. After all that inflammation, my left eye was left with astigmatism and thin sclera... Right when the semester was over, on Dec 17, my right ear got filled with fluid, I thought I got water inside so I was doing all the weird things to get it out...At that point I was on 5mg prednisone. A few days later both of my eyes were turning red, only slightly, my ophthalmologist and I attributed it to computer, since I worked from home full time. On dec 25 I had to go to ER because it seemed that my ear was about to burst any second, but they gave me antibiotics...which were not helping.
    Dec 27, since My hubby and I finished our 2 year degree, we were moving up to Albany NY to continue our education. That day I had the worst headache I've had in a looong while. I noticed how over two days, the inflammation in my right ear moved into my throat...bronchi...lungs, I started coughing... I also had red eyes, ear pain, fever and terrible fatigue. As soon as we moved, we went to see ENT doc, he just drained my ear and gave me the strongest antibiotics...and they were utterly expensive, needless to say they were not helping neither. First a few days of January I was simply laying in bed, totally congested, fevering, with ear pain...my cough was becoming worse and deeper and most of the time I was unable to stop it. Another interesting thing at the time was three purple skin nodules under my middle finger.
    On Jan 6, I woke up and started coughing really painfully and deeply, I went to the bathroom and coughed up some round purple-red ball. We rushed to ER, Albany med, were they got terrified that I have a TB...Over the next 4 days I developed horrible joint and muscle pain on top of everything else my X-Ray showed a few nodules in my lungs...I was close to lung biopsy, but the docs were afraid they'd release TB into the air so I had to cough up those purple balls from for 4 days, to see what was in them...i was really close lo lung biopsy, but some genius doctor came up with the idea to cut out one of my skin nodules, we did exactly that. And on Jan 10, 2012 results came back, consistent with Weg. I got bombed with steroids, then cyclophosphamide, and discharged home after 4 days with tons of info on vasculitis and my meds support websites and groups and with the heaviest baggage yet...Wegener's Granulomatosis...
    I was still fevering and was extremely weak, I was on 60mg steroids and fevering, I went to my classes for three weeks while some weird pain under my right rib was becoming bothersome, till the point when I could not breathe after a short walk. We went to the ER and my doc put it this way, my kidneys were pissed....but due to what? meds or weg? after kidney biopsy we learned that they got 50% inflamed due to weg..soo we started Rituxan and plasmapheresis...I spend 3 weeks in the hospital saving my kidneys. I was discharged with 60mg pred and tons of meds, I remember taking 12 pills/day. My hearing got worse in both ears due to past inflammation...
    Everything was alright, I was dealing the best I could, I had to stop my semester as well as my work for 3 months...I learned the wonders of prednisone...and developed the well known love-hate relationship.My kidneys completely recovered, creatnine was back to norm and protein was gone.
    Even though i knew that Weg flares up often, I was still hopeful and getting ready to attend pharmacy school, my grades were phenomenal, and everyone was telling me not to let the disease to interfere with my dreams and my life... In the spring 2013 i got the letter from the pharmacy college, I got accepted to their 2nd year pre-pharm. BUT in the spring of 2013 I also was developing what turned out to be craziest sinusitis...My ANCA levels were fluctuating, I was off steroids also, my docs didnt want to put me back on them, just watching my ANCA going up and down...well it went up after all...and I managed till July, I exploded basically and ended up in the ER, all weak with joint pain and my face felt as if it was cracking in 2 halves. Another bomb of steroids and RTX...they didnt want to give me cyclophosphamide due to my age and possibility of having kids in the future. The docs had a plan to keep me on steroids longer, they though I got off of them too soon and it caused my flare. I went into remission and started Pharmacy school on 50mg of steroids...that didnt go well, I was anxious, but I attributed it to just stressful situations and crazy workload i also could not concentrate ...it was prednisone, and I got diagnosed with PTSD and given anti-depressants. I had to stop pharmacy, it is for the better though... That fall I got diagnosed with osteopenia due to long use of high doses of steroids ...and I started developing cataracts in both eyes, again due to pred...
    I went back to my university to continue bachelors in Bio...Spring 2014 I found a new study published by Dr. John L Niles, it said that patients with wegs do just amazing depleting B-cells every 4-6 months. They were off the immuno -suppressants and were on relatively low doses of steroids, after 10 years of research this method turned out to be low on toxicity overall.
    We wrote to him and got an appointment on June 3, 2014, he explained everything and I agreed to continuous RTX. My ANCA was positive on the day we drew my labs, so we had to get me into remission first...
    Likely, I found out how not to eat everything in my refrigerator and anything in my sight, while rocking steroids, I got into yoga, and as of right now it helps me to cope with physical aspects of pred. I don't gain weight, I'm a vegetarian, though I eat most of the time vegan. Yoga also helps with my osteopenia and my joints, since I learned that pred can lead to hip replacement.
    So since July of 2014, I've been under Niles watch, I got 2g of RTX in July and 60mg steroids again but this time got off fairly quickly, I was optimistic and anxious at the same time....did my tests one month ago and pr3, ANCA were negative I was on 10mg pred and nothing else, immuran was stopped in September... so we just went for my RTX round on Dec 3, and the labs came back yesterday ANCA and pr3 borderline, I'm stomped, my wegs correlates with ANCA levels, I don't know how, but I managed to cry and rage for 4-5 hours last night, today I woke up just being absolutely depressed and disappointed...As he explained back in June, that RTX takes care of B-cells, which differentiate into various plasma cells (azathioprine takes care of these as well as other immunosuppressants) the plasma cells make ANCA (pred. here) I wonder how much pred I have to be on...or have we not wiped all the plasma cells from the bone marrow? So yep, I get mentally crashed when I see such results, I was shaking opening that letter.. and lost all the joy when I did...I admire people who stay optimistic and strong... I know I have to cope better with it, it is for my own health and sanity... it will be happening here and there. I went to a psychologist for 10 months...and stopped this summer, thinking I can handle it. But as it turns out, I'm afraid of this disease, I don't want it to change my life too much, although it already had, I don't want it to be associated with me neither...I don't want it to be a part of me, but it actually is...I can reason that, but deeply I refuse to believe and accept it. I don't talk to my friends about it, behaving as if nothing was ever bothering me health-wise...Only my hubby sees and listens to my rage from time to time... I have too many questions and too little answers, now I'm unsure of my career, since all I ever wanted to do was medicine/bio involved, and since i'm now immunocompromised, I can't be around sick people...I don't know how women manage their pregnancies and wegeners... and what is the prognosis long-run and quality of life?! At this point I feel as if weg dictates how and what and when I should do and I have to plan everything around it...i hope this is not true. And of course, what is YOUR prednisone magic number??? I'm sure still looking for mine. Now I suppose we will watch my ANCA, PR3 and whatever else...I know it is a minor increase but ANCA didnt get lower on its own as of yet. We always waited until an actual flare and then treated it all aggressively. I hope it won't be another painful flare this time and a slight pred increase will do its work. So now I'm waiting on further instructions from Boston.
    Also, on the side note, I suspect my weg is due to me playing inside cement mixing machines when I was little, I still cringe when I think about it. I grew up in Russia and construction sites were such an attraction. Russians are also big on asbestos, my very room had it and the walls in my school...all that exposure plus the genes ad many think do have a role.. and here I am with wegs. Also, I notice, when I'm exposed to silica dust outside, dusty, sandy parks and what not, my throat and ear that was completely inflamed start to hurt until I use sinus rinse and clean my throat as well...My doctor also noticed my ear becoming red when I spend time outside in dry weather, then it gets better once I'm inside...
    So here is my story, finally got enough courage to register here and share it...

  2. #2
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    Hi Julia and welcome

    Thankyou for finding the courage to tell us your story .......and WOW

    Acceptance of Wegener's for many people is one of the toughest things, but it does get easier. Don't let WG rule and take over your life though

    You can now spare your hubby some of the stress and sore ears by venting, and yelling and everything in between, on here.

    You have certainly come to the right place to ask some very knowledgeable people (because they live it each day) questions and get the right answers.

    I send BIG gentle hugs to you from Australia and I will just let you know again - it does get easier
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Thank you, Michelle for the warm welcome The odd part of my attitude toward this whole situation is that when I got diagnosed I was so determined that our initial plans would work out OK ...with a few bumps here and there(no those bumps were plain simple nightmares)... But I got back to my studies as soon as I was able to and maintain my normal life as much as possible, but with each flare my confidence and optimism were just getting lower and lower. I'm just getting really tired, I invest a ton in my overall health otherwise, though the stress is my problem(work and school plus weg)..I was also expecting every flare to be similar to what I had in the past, nope each and one of them had a different route even though I barely had a year in between... I have no idea why some people struggle to get into actual remission to begin with, others have similar to mine experience, and others achieve a decent remission... and now I'm anxious again since I still have to poke around and find out how much pred works for me or if fluctuating ANCA and PR3 can really be a norm Goodness all this rant just keeps coming...After all, I keep reminding myself that I'm lucky to be alive here and now, and to be in the US. I do hope to learn more from people on here and hopefully some things that I share will help someone as well

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    Julia,
    Thank you for sharing your story, and I will say that you have been thru a whole lot. You have managed to accomplished some great things while fighting this unpredictable disease. I to denied my disease for almost 3yrs after being dx'ed. I know you can contribute a whole lot to this forum with your knowledge. Keep your chin up and just keep doing what your doing, it will get better. Wishing you all the best!
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Thank you so much for your kind words, Jana!

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    Hi Julia,

    Welcome to our world, glad you finally got your story out. It is never easy coping, but the people here are a wonderful support, particularly because we all understand, particularly feelings. I have the fortune/misfortune to be a retired psychologist (a young 67). I told myself that I could deal with all the mental dramas. To quote an Australian expression (like Michelle, I am an aussie) 'what a dickhead I was!' we all need help and support with this crappy illness from time to time, and when you are having a bad day, this is the place to be and vent. Take care and again a warm welcome.

    Terry

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    Thank you Terry Honestly, I was resisting the idea that I'd need to go and share this with anyone, I postponed my psychologist for a while, even though I studied psychology myself for a few years and knew the importance of actual therapy. I love to help people and listen to them,instead .

    Thank you again! It, somehow, already feels a bit better

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    Welcome Ailish,

    I was also 22 when I got told I have Wegener's. and prior to that time I hadn't seen a doctor in years.
    I remember it took a few years to get everything worked out for me too, I also know that I'm one of the lucky ones that haven't needed to take prednisone or anything else for my Wegener's since it went into remission over a decade ago. My ANCA levels remained positive for a number of years after stopping treatment and finally went to zero. Over the years it has slightly elevated at times but I haven't taken any more meds for it.
    I have been able to lead a pretty normal life, I've just seen a lot more specialists than most people my age.
    I hope that your ANCA will eventually get zero also, Until then everybody here will listen and try to help you out with any questions you may have.
    Dx'd December 2000

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    Thank you for sharing some of your experience! I'm glad to hear that you are one of the lucky ones! Congrats!!! I'm sure many get puzzled with all the different aspects of wegener's, and ANCA testing stuff including myself.I haven't even talked to any weggie before, only read some stats here and there; so I'm happy to see people managing and doing good, maintaining a positive outlook about life.

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    Your story sounds much like mine! You can do this! I know you want to scream at this stupid disease. Ive been there. And to be honest after 13 years i still get really mad at it. Hang in there. With good docs who know how to deal with this you will get figured out. Remember to be gentle to your self. I am finally learning that its OK to admitt i am not going to keep up in life with everyone else. And thats ok!!! Do what you can but be nice to you This stupid disease is mean enough -you dont need anymore meanness!!

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