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Thread: Sick & Tired

  1. #61
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    I have been away from the forum for quite some time. My ipad is working better now so I am back. I was stuck with my phone and the website is impossible on a phone.. Can't get the hang of the app.

    Anyway, I have taken budesonide. My doctor did not want me to,take the inhaled version while I was on pred. I don't remember why. It was onky my primary care at that time, and she is very cautious about meds. Later on in my journey with asthma/chronic sinusitis/bronchiectasis, I had an ENT who gave me budesonide capsules which I emptied into my sinus rinse, It seemed to help quite a bit. Very expensive though and ultimately I found that other things worked better.

    I have never heard of taking it in a pill form. I am glad that it is working for you. @annekat has an amazing memory. I barely remember taking it myself! Feel better soon! ❤️
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  2. #62
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    Jacquie, I also remember that your husband, Bob, possibly took it in some form, for his issues? Yeah, my memory is weird, I remember some things but not others. It was in our email ramblings about inhalers and such. I have never taken budesonide myself.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

  3. #63
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    Yes, Bob uses inhaled budesonide when his asthma is worse than usual. He doesn't like to take it because any kind of steroid can worsen or cause glaucoma, which he has.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  4. #64
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    Quote Originally Posted by marta View Post
    Hey beautiful Alysia,

    I haven't read all the replies to the end, so forgive me if I am repeating something someone else has said, but mine is so 'out there' that I doubt anyone else is as cooky as me.

    Have you considered parasitic infection? I know it sounds gross, but with a depleted immune system and living in a warm environment it's a high possibility.

    Last year, before my flare, there was a guy coming to our town with some pretty amazing theories, and even more amazing success. Quite a few people in my small town of 4,500 were helped by him, and the most help came to those with gastro issues. My mom being one of them, and a neighbour who was diagnosed Celiac being another. It turned out that my neighbour had an 11 foot tapeworm and once she took antiparasitics, and passed it, she is no longer Celiac. My mom had diverticular disease and couldn't eat, she was a shadow of her former self, and after treatment with him, she eats everything. It's worth a check, but some docs are not very thorough, as was the case with my neighbour, who went to to medical docs in town to confirm the diagnosis he gave her of a tapeworm, and they did the stool test and told her she has no parasites, just Celiac disease and to forget about this quack. She luckily didn't listen to them and did the three day treatment, and is now healthier than she has ever been.

    Mom's diverticular issues were quite alleviated right from the get go with Beta Carotene. I think that would help you too as any gut issues tend to break up the mucous membrane in your guts, and beta carotene helps rebuild mucous membranes (hence the it's good for the eyes bit) What he told mom to do is take high doses (she was taking three in the morning and three at night) of beta carotene until you start to see your skin turn orange. When you see a change in skin colour, it is no longer acting therapeutically and your body is storing it, and then you can stop taking it. It sure helped my momma's tummy.

    I'll also send you the link for Leonard's site. He overstates his ability sometime, which is how he tends to turn people off, and I've told him as much, but he has also helped a lot of people (not all, like he likes to think) but a lot. So it's worth a look if nothing else. Blog ? The Blog of Leonard Carter (I'm linking the blog because it has some interesting topics.) Maybe you can make another trip to Canada and see Leonard and get your issues fixed up.

    Hope that helps.
    Much love.

    Marta
    Thanks for the info, the caring and the great story. Your mom sounds very brave. Not sure I have enough courage to try the beta carroten up to this point.
    I do get a diagnosis last wednesday (wrote it above) of collagenous colitis. Second disease. Talking about AI diseases and finding the common thread, my new disease might be AI. It is also rare, at least in Israel, and from what I read so far, it is not clear if its AI or not. The treatment is steroids (budesonide).
    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. #65
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    Quote Originally Posted by BookNut View Post
    I have been away from the forum for quite some time. My ipad is working better now so I am back. I was stuck with my phone and the website is impossible on a phone.. Can't get the hang of the app.

    Anyway, I have taken budesonide. My doctor did not want me to,take the inhaled version while I was on pred. I don't remember why. It was onky my primary care at that time, and she is very cautious about meds. Later on in my journey with asthma/chronic sinusitis/bronchiectasis, I had an ENT who gave me budesonide capsules which I emptied into my sinus rinse, It seemed to help quite a bit. Very expensive though and ultimately I found that other things worked better.

    I have never heard of taking it in a pill form. I am glad that it is working for you. @annekat has an amazing memory. I barely remember taking it myself! Feel better soon! ❤️
    Thank you for your caring and for the info Jacquie. I am glad to know that budesonide can be used with pred.
    Talking about @annekat - I agree: her memory is amazing ❤ Thanks Anne.
    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.

  6. #66
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    An update: still coughing like hell. Joints screaming. The bleeding under the nails is painful. Tired like hell. Tonight I had night sweats. Some nights I dont.

    I saw my lungs dr. yesterday. He checked me a long hour. Spirometry test was ok. He didn't like my blood tests. He jumped from his chair when I showed him my nails. He thinks that the wg is flaring. I also think so.

    But I was less stressed then him. I "saw" more weggies flaring then he did

    He wanted me to be addmitted to the hospital. Not only because of wg flaring but because he said that there is a need to rull out a germ in the heart's valve. This one:

    https://en.m.wikipedia.org/wiki/Suba...l_endocarditis



    He didnt explain to me why he suspects it. Maybe he saw something in my chest x-ray ?
    He just said that I need to be addmitted. That after I will finish the antibiotics, they will have to take blood cultures to check it.

    I didnt go to the hospital.

    Yet ?

    First, only today I finished the antibiotics so I guess there should be a period of time before the blood cultures can be valid. Anyone knows how much time needed ? No use to wait for it in the hospital.

    Second, considering the wg flaring, I already got my rtx. Its done. Just needs to wait for it to start working. I cant get more pred on my own before rulling out germs. I am on 10mg right now. Not enough for a flare. But more safe for germs. Also my (new dx) colitis doesnt react well to more then 10mg pred and I didnt yet start treament for it (cant do it all together).

    Third, hospitals here are crowded and filthy. I dont want to catch some germs or viruses. Also I can only eat my clean specific food, I need my toilet and my bathroom. And my quiet. There is a holiday this week here and I guess no decent dr will be available in the hospital.

    So this is the thinking that I made since yesterday. Any comments are very welcomed. Especially if any one knows how much I need to wait after finishing antibiotics, so that the blood cultures will be valid.

    Thank you all for being here. It means so much for me. I love you. God bless.
    Last edited by Alysia; 04-11-2017 at 02:31 PM.
    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. #67
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    God be with you as you search for answers and solutions!

    Sent from my SM-T800 using Tapatalk
    ----Arleta




  8. #68
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    Thank you Arleta. You are very kind.
    God be with you too ❤
    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.

  9. #69
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    Hang in there Alysia!!
    MikeG-2012

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


  10. #70
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    Wow. While I was reading the post "flare" was going through my mind. I totally see your line of thinking, and I don't know if my choices would be different based on the situation. I also like to avoid hospitals if I'm not going to get to see a doctor who I feel confident will understand what's going on, and in the process expose myself to hospital bugs that could get us worse than most patients due to our treatment. I get your logic and reasoning. I will send you all the positive energy I've got. Tricky situation with the bug the doctor found, but knowing you, you'll have this nicked in no time.

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