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Thread: How to know when you're having a flare

  1. #121
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    welcome Jennie, I just want to echo what the others wrote and to send lots of hugs to you and to your son. he will be just fine.
    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.

  2. #122
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    Wow Pete, you should be our official forum welcomer what a wonderful explanation you have given.

    Hi Jennie and welcome from me, from Australia.

    I saw your post today on the Wegeners page on facebook. I'm so sorry that your son has to go through this horrible time.
    I also echo what everyone else has written.
    He is in good hands and I hope he continues to improve
    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

  3. #123
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    Praying for you all.



    Sent from my iPad using Tapatalk

  4. #124
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    Jennie, welcome to forum, I know this diagnosis is scary, but like my doctor told me while I was still in the hospital after I was finally diagnosed with this, it is a chronic disease, you won't die from it, "we will keep it in control with the medications". He has been right!

    I would also like to ask if anyone experiences a sort of low blood sugar event, even after you have eaten, where your legs feel weak and kind of like numbness to buzzing in your feet, pounding of your heart, have to lay down, too weak to stand up, and it passes sometimes after I eat peanut butter, but even my head feels fuzzy. This has happened to me before multiple times in the past, MD, just shrugs his shoulders and doesn't know what it is. It usually happens after I have pushed myself too much and not gotten enough sleep, or rest. Is this a flare up symptom? Thanks everyone for your consideration. Marilyn Maxwell

  5. #125
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    Quote Originally Posted by Marilyn View Post
    Jennie, welcome to forum, I know this diagnosis is scary, but like my doctor told me while I was still in the hospital after I was finally diagnosed with this, it is a chronic disease, you won't die from it, "we will keep it in control with the medications". He has been right!

    I would also like to ask if anyone experiences a sort of low blood sugar event, even after you have eaten, where your legs feel weak and kind of like numbness to buzzing in your feet, pounding of your heart, have to lay down, too weak to stand up, and it passes sometimes after I eat peanut butter, but even my head feels fuzzy. This has happened to me before multiple times in the past, MD, just shrugs his shoulders and doesn't know what it is. It usually happens after I have pushed myself too much and not gotten enough sleep, or rest. Is this a flare up symptom? Thanks everyone for your consideration. Marilyn Maxwell
    Is your breathing okay? Sometimes if you're not getting enough oxygen it will take it away from the extremities and give it to your vital organs to keep you going. Just a though. Have you actually taken your blood sugar to see if it's low? If so how low is it? Eating should drive your blood sugar up not down. If nothing else it spikes depending on what you eat. Which of your docs have you shared this with?
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


  6. #126
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    My rheumatologist, I don't have breathing problems, my lungs were affected initially, but have not had a problem. My ears stay plugged up 5o% of the time! but 2 ENT specialists can't find anything wrong. One time I had a "spell" and I think I passed out, but before I did I couldn't move my legs, then I didn't remember anything until I woke up, after I told my doctor he took another ANCA which was elevated to 637! Had been 60 last time. I then started the Rituxin after he increased my imuran and I had a reaction to the elevated dose. That's why I was asking if anyone had similar symptoms. I take another ANCA in March. After I had the first treatments the ANCA went down to 136. Rituxin was easier on my body than cytotoxin but still had reactions, have to take steroids to counter allergic reactions. Anyway, would like to hear if anyone has these reactions or "flare ups". I have also had increased pain in wrists and hands. Thanks for all support. Marilyn Maxwell

  7. #127
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    Quote Originally Posted by Marilyn View Post
    Jennie, welcome to forum, I know this diagnosis is scary, but like my doctor told me while I was still in the hospital after I was finally diagnosed with this, it is a chronic disease, you won't die from it, "we will keep it in control with the medications". He has been right!

    I would also like to ask if anyone experiences a sort of low blood sugar event, even after you have eaten, where your legs feel weak and kind of like numbness to buzzing in your feet, pounding of your heart, have to lay down, too weak to stand up, and it passes sometimes after I eat peanut butter, but even my head feels fuzzy. This has happened to me before multiple times in the past, MD, just shrugs his shoulders and doesn't know what it is. It usually happens after I have pushed myself too much and not gotten enough sleep, or rest. Is this a flare up symptom? Thanks everyone for your consideration. Marilyn Maxwell
    It sounds a lot like my hypoglycemic episodes but I have diabetes and am on insulin and they happen when my blood glucose levels get too low from an imbalance in my insulin levels, food eaten or blood glucose manufactured or used by body. I usually have sweating and feel too warm too which is my main clue along with weakness or dizziness.
    Knowledge is power! Wisdom is using it to make good decisions!

  8. #128
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    Thank you for your answer, I feel like it could be low sugar but it happened about 1 hour or a little less after I had eaten a dinner of tri tip, small portion beans and rice with egg in it, and salad. I feel this was a balanced meal and I shouldn't have had this episode. This has happened to me before even a half hour after I've eaten. Like I wrote before, when I had multiple spells like this, took an ANCA, my numbers were sky high! I did take my blood sugar once when I felt like that and sugar was in the low 60's. When I take my monthly lab and fasting it is in the 70's to 90's. Oh well, just wanted to check if anyone else has these symptoms. I am a nurse and very aware of my energy levels. If I push myself too much, I have these symptoms. I appreciate each one of you taking the time to read and answer. Thank you, Marilyn

  9. #129
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    Exercise or strenuous activity can reduce your BG levels. I feel lousy anytime mine get down to 80's. A 100 is considered normal but I usually run a lot above that so any drop to 90's can then bring on symptoms for me. I would ask for a CGM reading for your self and note when these episodes happen. Hypoglycemic episodes can be a serious problem and brought on by various things which should be checked out if you think you are having them. A reading in the 60's certainly suggests a problem to me.
    Knowledge is power! Wisdom is using it to make good decisions!

  10. #130
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    I agree with Jack.

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