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Thread: Sick & Tired

  1. #71
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    My heart echo results came back today. No indication to SBE. Thanks be to God.
    It did mention: "mild pulmonary hypertension".
    I googled it and didnt know what it means in my case. Anyone knows ? Can it be a reaction to the wg flaring in the lungs ?
    The pred is doing what it knows to do, so my joints are less sore and I cough less. Will see my dr next week..
    Thank you all for being here. I love you ❤
    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. #72
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    Quote Originally Posted by Alysia View Post
    The pred is doing what it knows to do, so my joints are less sore and I cough less. Will see my dr next week..
    I am glad you are getting some relief Alysia!!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


  3. #73
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    Glad to hear you are doing better. I hope you can avoid the hospital. ❤️

  4. #74
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    Quote Originally Posted by Alysia View Post
    My heart echo results came back today. No indication to SBE. Thanks be to God.
    It did mention: "mild pulmonary hypertension".
    How is your blood pressure, do you take anything for this? I don't think you have ever mentioned your bp before

    I'm glad your joints and your cough are being relieved by our friend pred.
    Hopefully the doctor will have some more answers for you next week
    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

  5. #75
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    Wishing you all the best.

    Sent from my SM-G920V using Tapatalk

  6. #76
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    Thank you, Mike, Jacquie, Aneinu, Michelle and all the others. I love you ❤

    An update:

    a mess:

    So, the lungs dr thinks its a wg flare. I also think so. But he also suspected endocarditis (infection in the heart's valve) and wanted me to go to the ER. I didn't.

    I saw my wg dr. yesterday. To my great surprise he doesn't think it's a wg flare. He said that it doesn't behave like my previous flares.

    Can't each flare behave different ? Since when is wg behaving ?

    He thinks that it is something infectious going on: andocarditis and maybe more. Labs for Q Fever came back on the border. He also still suspect that scary whipple disease. He said that the biopsies that were checked are from the large intestine and not from the small intestine, so it can't rule it out.

    He said that with all the rtx that I am getting for years now, 2000mg every 6 months, it doesn't make sense to him that my wg can flare. Really ? What are you saying wg experts ? Please tell me. I need your experience.

    He told me to consult with my infectious diseases dr. So right after I went out from his office I called the infectious diseases dr. who works few streets away and he accepted me.

    The infectious diseases dr. checked me and all the labs, tests, letters from docs, heart echo etc. for 50 min. Then he said: "you don't belong to me. You have nothing infectious. Don't take any antibiotics. I will meet you only on happy occasions". He still sent me to check again the Q Fever and also to do blood cultures to rule out endocarditis. (Btw, one needs to wait 3 weeks after antibiotics before doing them). But he said: "I promise you that it will all be ok in those labs".

    I wanted to hug him and went home happy.

    I sent his letter to my wg dr. today and he still thinks that I must take antibiotics for a long period. One is called Flagil. I am not going to take it. It can cause psychosis and with all my sick body I am not giving up on my brain. Enough is enough. The other antibiotics is Doxylin which I KNOW already what a yellow crazy diarrhea it is going to cause me.

    I don't want to take antibiotics just because he can't see that its a wg flare: the night sweats, low fever, coughing and "pneomonia", crazy joints pains, and the bleedings under the nails, fatigue and signifcant improvement on higher pred. And dramatic drop in hemoglobin (from 12 to 9.7)

    Does it sound like wg flare to you ?

    Not counting the diarrhea anymore because it belongs now to my second disease, the collagenous colitis.

    And on the top of it all, I dared to eat two cucumbers and spent hours again with the damn crazy wattery diarrhea. Never again cucumber.

    Any input will be greatly appreciated. Thank you all for being here. God bless you ❤
    Last edited by Alysia; 04-25-2017 at 03:47 AM. Reason: Added the drop in hemoglobin
    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.

  7. #77
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    I googled collagenous colitis (CC) before responding just to learn a little more about it. CC, like wegs, has no known cause. Antibiotics don't work on wegs, so I wonder why your wegs doc wants you to stay on antibiotics. Some antibiotics cause diarrhea as a side effect, so you might get some relief by discontinuing the antibiotics.

    Is it possible that you and your wegs doc and the pulmonologist can all talk together at the same time? It seems to me that they're working at cross purposes within their own respective specialties. The goal of this conversation should be to accurately diagnose your current conditions and provide you with a treatment plan that will work.

    Good luck!!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  8. #78
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    All my flares have been whilst I was on maintenance treatment just like most WG patients. The response to a flare is a temporary increase in current maintenance medication usually just prednisone. Should the flare start to subside the treatment is then gradually reduced whilst symptoms are constantly monitored. When the flare symptoms have gone then maintenance treatment is resumed. From my own experience and from what I have read here, most people flare whilst on maintenance treatment. I have been on the same maintenance treatment since January 2009 with increases in pred only on the few occasions when I have flared. I dont understand why your doctor has said that you cannot flare whilst receiving treatment. Maybe it is different with RTX.....I dont have experience with that drug. All the best Alysia. Hope you get some answers soon.

    Rose
    Last edited by Rose; 04-25-2017 at 03:58 AM.

  9. #79
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    Wow.
    Firstly, I hope and pray that you feel better soon.
    Secondly, some of those conditions do sound like wg flare. The doctors in the clinic believe that rtx does not completely prevent flare ups for my son, as some people react differently.

    As an aside, my son has been cleared to study in Israel and he is on a flight now. The 1.5 doses of rtx, plus pred, plus the Imuran is keeping wg in check. His hemoglobin, kidneys, joints and more are all thank God in his working condition. Ct on lungs was positive.

    We have been referred to a Dr philip haskes in sharei zedek.

    Keep us posted please.
    Be well.

    Sent from my SM-G920V using Tapatalk

  10. #80
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    Wow, @Aneinu it is so amazing that your son is in Israel right now. I sent you pm. Please check it. I googled his dr. in Jerusalem and he looks like a real expert. He is pediatric rheumy and was in the list of the best docs in Israel.

    Thank you so much Pete, Rose, Aneinu and all the others. I couldn't have make it without you all.

    Pete, your idea that they will all communicate for real and not just in letters, is wonderful, but not possible. Each one of the 3 docs I mentioned above is working in a different hospital and clinic.

    Thanks for your input Rose and Aneinu. I do think that one can flare while on rtx. If anyone around knows more about it please tell me.

    I wrote to my wg dr that I am afraid that my poor stomach will not like the doxylin, but he insisted and wants me to take also bactrim. I was on it in the past but it elevated my liver enzymes. He thinks that I have Q Fever and not wg flare. I doubt it.

    And I am tired. I told my family dr.:

    "one needs to be healthy in order to be sick".
    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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