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Thread: Sick & Tired

  1. #21
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    I'm so glad she was able to put your mind at ease.

    I like your conclusion and I totally agree........weggies rock.

    So what is the answer though - do you increase your pred and stay there, or did she have some food suggestions for you?
    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

  2. #22
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    Alysia, I also had high inflammation markers in my stool when I had the bowel flare ....apparently not as high as a Chrones patient or someone with ulcerative colitis but high nevertheless. As I mentioned in my post Bowel Flare it was only when I received the 500 mgs of Solumedrol for 3 consecutive days that I got relief from the diarrhea (30 plus times a day) and the relief was immediate after the first 500 mg infusion.

    My Rheumatologist told me at the time that he had to hit the flare hard with the Solumedrol and that smaller dose of oral cortisone would not work.

    It is over 2 years now since the Solumedrol and no more flares in my bowel. After the 3 days of the Solumedrol I immediately returned to the 2.5 mgs of prednisone that I have been taking for the previous 4 years or so and continue to do so today.

    As I also mentioned in my post Bowel Flare, the IV Solumedrol suppressed my immune system and I started to get repeat attacks of Diverticulis. I had an attack of this about 3 weeks before the Solumedrol (probably caused by the constant diarrhea) and was not fully recovered when my immune system was suppressed with the Solumedrol.

    Should the bowel flare happen again the Rheumatologist says he is just going to try one infusion of the 500mgs IV and see how it goes.


    Rose
    Last edited by Rose; 03-23-2017 at 12:46 AM.

  3. #23
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    Hi Alysia, I've been away for a while and I'm disappointed to hear your bowel issues are getting worse.
    We both talked about our bowels previously, as I've also had lots of problems, with no diagnosis.

    Fortunately for me, after 5 years of terrible bowels mine have been a good bit better for the lat 2 months. I've finally come of pred, which may be nothing to do with it. I just hope you get some answers soon, or it miraculously improves like mine has.

    I do think stress is likely to aggrevate the problem, even if it's not the sole cause.
    Diagnosed April 1995

  4. #24
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    Thank you so much, Michelle, Rose and gilders for your caring and wisdom and kindness.

    I think that my wg is flaring. The last few days my joints are screaming, especially in the middle of the night; Like an anatomy lesson, telling where do you have joints... also a bit of fluids in my ears, some nose productions (tiny bloody) and coughing all day long. And that damn diarrhea. I think I also had some virus few days ago, because I had fever but its gone. Thats why I hesitated if and when I should take more pred.

    Question number 1: if you have a virus/ germs/ infection - then elavating the pred will make it harder to recover ?

    Rose, this is what I understood from what you wrote about the coincidence of diverticulitis after high IV pred ?

    If I will get an infection now, I will be in trouble because every antibiotics right now makes me diarrhea.

    2 days ago I upped my pred from 5mg to 15mg. I was careful not to up it too much because of what I wrote here on question number 1. So I still have joints pains, etc. but feeling a bit better.

    I thought that I had some virus right after the day I got rtx, because eventhough I got 100mg IV steroids on Thursday, I had totally crazy diarrhea and other symptoms on Friday afternoon.
    But then I thought: can it be a "reaction" for "tapering" fast the steroids from 100 to 5mg? Does it make sense ?

    Question number 2: Those who are getting rtx, at the day after (which means after the 100mg steroids) how much pred do you take ? Is it possible to have "reactions" which are similar to reactions that we get after a too fast taper ? (When we get our symptoms back and strong)

    (I hope my question is clear enough... ?)

    Gilders, maybe your bowels issues are gone because you are in remmision ?

    Thank you all for being here. I love you. God bless 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.

  5. #25
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    Regarding your question #2: My pred dosage does not change on the days during and following rtx. I generally sleep poorly the night of the infusion, but I think that's attributable to being inactive that day and still getting the steroids through my system. The day following the infusion, I'm a little tired, but it doesn't prevent me from doing anything. I'm back to normal within 24-36 hours.
    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

  6. #26
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    Alysia before the repeat attacks of diverticulitis in 2015, I had been suffering from attacks for around 10 years. I had my first attack in 2005 (3 years before Wegs diagnosis) when I was 55. At first it was one attack every 2 years but increased over the years to about 2 attacks a year, Diverticular disease is not uncommon in older people.

    I actually consulted with my Gastroenterologist before starting the IV Solumedrol as I was concerned because of my history and the fact that I had had a bout of diverticulitis a few weeks before. He was hesitant at first to agree to the treatment because of my recent bout as he was worried that it would return and although a Wegs flare was not diagnosed (all tests were returning normal) in the end he told me to go for it.

    None of the doctors were convinced that it was a flare but they could find no other reason for the constant diarrhoea and how terribly ill I was feeling....and looking!! The doctors and I decided that it was worth a shot even although there was a possibility that it would not work and would infact give me more problems. It worked for the flare but unfortunately I did get bouts of diverticulitis following the treatment. I don't think that would have happened had I not had a history of diverticular disease and had just fought a recent bout diverticulitis.

    To answer your question.......yes high dose Pred will make it harder to recover from an infection. I would also like to say at this point an elevated temperature can also be a sign of a Wegs flare. It is very difficult for the doctors at times to differentiate between a flare and an infection.

    Anyway that is my story. It was definitely a Wegs flare in my case. I am a bit confiused about your case as I would have thought that 100 mgs of Pred would have helped your diarrhoea if it is a flare and not made it worse. I really do hope you find answers soon

    Rose
    Last edited by Rose; 03-26-2017 at 11:47 PM.

  7. #27
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    Thanks a lot for your comment, Pete and for sharing your story, Rose.

    Rose, You have being through a lot... Its a tough combination of the diverticulitis and wg... are you feeling ok with your colon now ? Is your wg in remission ?

    Your explanation about the pred, making it harder to recover if one has also a virus or an infection, is what I thought, and that's why I am now on 15mg pred only... not sure what's going on right now: still feeling VERY sick, my joints are killing me all night and in the morning before the pred start to work... I still have damn crazy wattery diarrhea many times early in the morning (5AM), coughing, low fever from time to time, tonight I also had night sweats.

    I am not sure if its just wg flaring and the 15mg pred is not strong enough, or if I also have something else going on with the flare.

    My wg dr. suggested to check whipple disease in the biopsies and I gave his letter 2 months ago to the gastro dr. who did nothing about it. I just waited and waited for his answer in vain. Now I made a negotiation with him so hopefully he will do something about it. Whipple disease has same symptoms like I have : joints pains, diarrhea, coughing, vision deteriorating. It needs antibiotics and can be fatal without treatment. I just still cant believe how the gastro dr. Let me wait in vain without checking it.

    Going to second round of rtx tomorow. I dread the day after.

    Really very tired.

    Thank you for being here.
    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.

  8. #28
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    Alysia, I was wondering if you have ever used an OTC anti-diarrheal medication such as Imodium.

    Hope you get some relief soon...
    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

  9. #29
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    I know Andrew made a 'Like' button, but there are times like this, that I need a 'Don't Like' button.

    Alysia, this is not good. But you are rare because you have WG, so why not be super rare
    Surely they would have seen signs of Whipple's when you had the endoscope down.

    Best of wishes and luck with the infusion and I hope it doesn't knock you around too much.

    Love and big hugs, sent your way
    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

  10. #30
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    Alysia, I am so sorry you don't have an answer for the bowel problems. I am wishing all the best with your RTX infusion. I would be very concerned about getting this infusion, before getting the doctors to confirm with you that this is not due to infection. Please asked them lots of questions and take really good care of yourself. Do you have someone to look after you? Please let us know how you are.
    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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