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Thread: The scariest 14 months of my life and then Wegeners

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    Default The scariest 14 months of my life and then Wegeners

    Hello everyone, Iím new at all of this. I am 34 years old. It has been very scary these few months but finally I got diagnosed. At moments Iím just so happy that at least I have an answer finally even though I have suffered so much mentally. I started with numbness on my fingers and toes from October 2017. I work as a Medical Assistant in a hospital clinic. Checking my own sugar, blood pressure and pulse at work when I could to find out if something was wrong. Nothing was coming out bad. I ended up asking one of the doctors that I work with to see me for a physical. My pulse was around 117 I remember but nothing else was weird. Doctor didnít see anything abnormal in the labs either. She diagnosed me with mental stress because of work, and sent me to a Psychologist. After 3 months, signs of anxiety at night, pain on my chest, numbness on toes and hands and ear pain. I went to a walking clinic after I couldnít with my ear pain no more. I had positive Strep. Lord... what a mistake having that, they treated me for that for a long time before they came with Wegeners. Because strep never left my system after months. So it threw everyone off. On May 2018 i remember I was dragging myself to work, at this point, my knees were in a lot of pain, stiffness I couldnít bent. One day I tried going down the stairs at the end of my day and I just gave up and started crying. Mentally this was it, I literally couldnít walk! I called my husband and asked him to please come for me that I couldnít give one more step. When I got home and guys I was very mentally strong to keep going. I was so scared to think I was so sick that I pushed myself until the end. He got me into bed and when I turned my elbows were full of lesions, red dots all over. This was in one day. So quick. We rushed to the hospital I couldnít walk, now my neck and shoulders were stiff and if someone tried to carry me I would scream of pain. They gave me steroids in IV and pain meds. Hospitalized for 7 days and still no signs of Vasculitis. So they treated me for Strep and RA until they sort it out. After they did the Anca test it took 15 days for an answer Iím not sure why. After I came out of the hospital I had to go see a Rheumatologist, he said Iím sorry you might have Wegeners but maybe the strep is throwing it off and itís a false positive sent me to a Infection disease specialist and she put me in penicillin shot once a month for strep. Now I was stable, but bleeding through my nose at time. He also referred me to another doctor because he said if it turned to be really Wegeners, it was a rare disease and he knew very little of it. Dr. Ariel Teitel in Manhattan, New York. What an excellent Rheumatologist in weird diseases. I actually didnít believe him at first. I was more focused on having strep and that all was going to be okay soon. I never had a big flair again but continued with pain until September 2018. When my eye got red, but still able to walk and be okay, I saw Dr Teitel and he said my labs were crazy now, and kidneys were at risk and to have a biopsy. I said no, Iím feeling fine, I have gotten a little of high diabetes now maybe protein is in my kidneys for that. No one is taking care of my sugar. I was debating Bc I was in such denial, no one had given me a straight answer for months and I was just so tired of it. But he said please listen to me, that eye is red. I said, a kid had pink eye 2 days ago at work, itís pink eye. He said please go to the hospital, get the biopsy done! He said to me ďif you donít listen to me, you might have top 6 months of living time this Wegeners is NOT A JOKEĒ I cried like a baby! I listened to him I went to the hospital again. They did the biopsy of the kidneys, and checked my eyes. He was right. I had positive Wegeners Vasculitis. Biopsy was positive. They rushed me to quimo. At this time I couldnít even have time to breathe, the look on my husbands eyes was unforgettable, we were all at shocked. Family all scared and no one understood what was going on. Was I going to die tomorrow, next week? What was going on, I was so healthy before this! They explained to me a few treatments, thankfully Rtx was the best that I could choose from since it has no effects like the other ones. I took it well. 6 hours of Infusion. I was just mentally stressed that i was going through so much but physically I was okay. Two weeks later on Nov 3 was the second infusion and now I have to wait 6 months for my next. How have I been feeling? GREAT! 60mg of Prednisone, now i am down to 40mg and every 2 weeks he will keep tapping down until he sees Iím doing better. Omeprazole for stomach, Lisinopril, 3 x a week antibiotics and very important Vitamin D3 for your bones. Now I have been feeling for the past 2 weeks a lil tired I¬ím not sure if itís the tapping down of the prednisone. I¬íve been moody and crying again. Iím not seeing any other doctors but Iím thinking I should go see a Pshycologist just for everything Iíve been through, sometimes I feel so down and scared but I have to look into that still. This has been a very hard process for me. I have a 9 yr old princess that has no idea and I just look at her so little still and I cannot give up. I have to give everything of me and get up. I still need strength and Iím learning as I go. I read some of your posts guys, you guys are so great keep it going. We the weak ones need you. Best of luck to all.

    Veronica

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    Default Re: The scariest 14 months of my life and then Wegeners

    Hi Veronica thanks for your story. You've been through the works! You're not giving up either which is great despite how you're feeling. Many of us have been to see a psychologist at some stage. It can really help a lot but make sure you get a good one that 'fits' you - one you're comfortable with and you feel can help.

    You're welcome to vent here any time too! Sorry your post got delayed. There are some spam prevention methods running that sometimes pick up things that shouldn't be and hold them for my review. I was a but slow on this one but you should be good to go now

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

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    Default Re: The scariest 14 months of my life and then Wegeners

    Oh Veronica, After reading your post I just wanted to reach out and give you a hug. You have really been through the ringer. If you did not feel bonkers by now you would NOT be normal. Also, the prednisone really alters your moods, makes you sleepless and hungry too. It sounds like your current doctor has you on the right path. I get four weeks of Rituxan infusion every four months. Initially, when I didn’t think things were working, my doctors told me that there is no one cure all for this disease. My Rheumatologist and my ENT both reassured me they would find the right protocol that works for me.
    I will be 69 years old this January and was only diagnosed two years ago. But my doctors tell me they suspect I had Wegeners for years. I had continuous colds and pneumonia. So my diagnosis was finally a relief.
    It is wonderful you found this site. Wegeners comes in so many different ways, and there are people here who can identify with your symptoms.
    I have said this before and sound like a broken record. Of course you are frightened and cry. Give yourself a break and indulge in a pity party. If you need help for what this has done to you emotionally then go for it. As Andrew said, make sure you see the right doctor for this too.
    Masha

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    Default Re: The scariest 14 months of my life and then Wegeners

    Quote Originally Posted by andrew View Post
    Hi Veronica thanks for your story. You've been through the works! You're not giving up either which is great despite how you're feeling. Many of us have been to see a psychologist at some stage. It can really help a lot but make sure you get a good one that 'fits' you - one you're comfortable with and you feel can help.

    You're welcome to vent here any time too! Sorry your post got delayed. There are some spam prevention methods running that sometimes pick up things that shouldn't be and hold them for my review. I was a but slow on this one but you should be good to go now

    Andrew
    Hi Andrew, I will look into a good one I hope I have luck. Thanks for your reply. It means a lot to me that Iím not alone.

    V

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    Default Re: The scariest 14 months of my life and then Wegeners

    Hi Masha, hug received!! You know I had colds and pneumonia in the past as well maybe I had this also for a long time. I read around posts that a lot of people were in stress around the time they got really sick. Maybe that throws a big part too. I will definitely take that pity party into consideration because boy I really need it. Family has been very warming these months I give thanks to God about that. Thank you for your reply Masha. And good luck to you as well and your treatment.

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    Default Re: The scariest 14 months of my life and then Wegeners

    Quote Originally Posted by andrew View Post
    Hi Veronica thanks for your story. You've been through the works! You're not giving up either which is great despite how you're feeling. Many of us have been to see a psychologist at some stage. It can really help a lot but make sure you get a good one that 'fits' you - one you're comfortable with and you feel can help.

    You're welcome to vent here any time too! Sorry your post got delayed. There are some spam prevention methods running that sometimes pick up things that shouldn't be and hold them for my review. I was a but slow on this one but you should be good to go now

    Andrew
    Yes Veronica! Very detailed description. Glad youíre here on the forum. Iím new too, so welcome.

    Rituxan is a ďbiologicalĒ drug developed to treat Vasculitis and other conditions relatively recently. Rituxan sees to work well for most without the consistent bad side effects of earlier treatments. Prednisone Iím not sure about but many patients seem to require it. Having been on large doses of Prednisone must say the side effects are difficult.

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    Default Re: The scariest 14 months of my life and then Wegeners

    I relate to your story. I was in the hospital at Christmas 2015 with an unknown disease. The family gathered around my bed and I just felt like dying. Enter the WEgener's diagnosis and Rituxin. Today I feel like I could keep going like the Energizer bunny.

    Welcome to the forum.

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    Default Re: The scariest 14 months of my life and then Wegeners

    Yes. Alł too familiar story. I was hospitalized following seizures at home, taken by ambulance to an unknown ER, where they saved my life repeatedly with uncontrollable seizures - 3 anti-seizure drugs, intubation, intensive care, etc. I was unconscious & didn’t know what was happening for about 2 weeks. Looking back I believe they “should” have put me on Rituxan infusions prophylactically. I was on meds that covered the possible indications of a flare until recently but “should” have recognized these personally before now. Will enumerate these for those interested.

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    Default Re: The scariest 14 months of my life and then Wegeners

    I feel your pain. Lord, I feel your pain. You have a 9 year old princess. Mine is 7. I just pray we both get to watch our daughters grow up (and be somewhat functional during that time). The more I see people who have survived this for 20+ years, the more I have hope.


    Pink eye, elbow nodules, and elevated heart rate: I had all three symptoms. Combined with bad inflammation numbers I wish doctors would go straight to Vasculitis. No excuse for doctors given the ubiquity of Medical information in 2018. I am so thankful I found a skilled pulmonologist who diagnosed me early. You are lucky you had a doctor that encouraged you to get that kidney biopsy as well.


    RTX has worked for most (cleared up my lungs, I had a terrible hemmorage), and I pray it will work for you.


    You have found a home here.

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    Default Re: The scariest 14 months of my life and then Wegeners

    Quote Originally Posted by John S View Post
    I relate to your story. I was in the hospital at Christmas 2015 with an unknown disease. The family gathered around my bed and I just felt like dying. Enter the WEgener's diagnosis and Rituxin. Today I feel like I could keep going like the Energizer bunny.

    Welcome to the forum.
    Im sorry John that you went through the same thing, and on Christmas time, oh my! Believe me when I say I could understand what you went through now. Like the energizer bunny is right 😄 I cannot take a rest at times, this Prednisone has me going and going. Lol. Hoping you are doing okay.

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