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Thread: New to Wegener world

  1. #11
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    Default Re: New to Wegener world

    Welcome Cathy,

    Yes a very familiar story, it's so daunting the not knowing or understanding. But time does help in getting used to it and seeing the patterns that you have.


    There is so much info online and some is great and some is irrelevant, lots of people have other conditions that may have affects along side of GPA and can forget to mention them every time they post or write about it.

    Ask all the questions you can in as some odd symptoms have easy answers, but some questions we would not think to ask or make a connection with GPA.

    Ben ;-)

    Sent from my SM-G930F using Tapatalk
    Ben


    Diagnosed in 2013


    Never, never, never give up! (Winston Churchill)

    What screws us up the most in life is the picture in our head of how it is supposed to be.... (Not found out yet)

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  3. #12
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    Default Re: New to Wegener world

    hi Cathy..
    I'm 72 years and I have had WG for 6 years now. I have not been on the forum a couple months now. I also had a little bout with depression. So I got out my crochet hooks and made a few throws and gave them to my friends. I leave some at the cancer center. It makes me feel a little useful when I cant go outside and dig in the dirt. Put a bottle of sanitizer in your pocket and USE IT. Pred makes me go up and down on high doses.
    Welcome aboard and keep your head up.

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  5. #13
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    Default Re: New to Wegener world

    Hi...I love that I found this forum and others that are new, and anxious with this disease. I hope my post is finding you feeling better. I do feel that each week I learn more from my drs or others here that help with forging forward.
    Marlene

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  7. #14
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    Post Re: New to Wegener world

    Almost 2 months since my diagnosis and I’m still feeling so tired. For those that have been dealing with this longer, when does it get better? I try to force myself to go out shopping etc but within the hour I’m exhausted.. hot flashing like crazy!!

    This is my second week of feeling so tired... not sure what to do to make it better...I sit with a little hand held fan beside my chair as the sweating is coming so often... face all red then the water pours lol.....I have these purple marks that have just popped up on my arms( as though they’ve been scratched)they usually go away as fast as they came..

    The hardest part so far is just being SO tired!!! Disease or meds???!!!

    Prednisone has been lowered to 30mg... methotrexate has been increased to 8 pills.. once a week.. divided 4 in morning 4 in evening..leucorvin for the day after and the folic acid pills daily... blood sugars have been high in evening but good in morning.. therefore I’m now taking metformin to help control this result of the prednisone...

    just needed to vent and hanging on to statements that “it will get better” (hopefully soon)

    Love to all and hope you are feeling well

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  9. #15
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    Default Re: New to Wegener world

    Hi Cathy,

    It does get better, but slowly. I was about four months post dx before I felt like expending any energy toward regaining strength. I remember think I’d just take a walk around the block. I was pretty winded by the time I got to the corner (about 50 yards) when I had to turn around and return home. But, I resolved to do a little more each day. In about six weeks, I was comfortable walking a mile at a good pace (about 14 minutes), so I gradually upped the distance over the next few weeks to 2-2.5 miles 4-5x a week. I was dxed in January, and I didn’t feel anywhere close to normal for about six months.

    I wonder about your hot flashes. Does your wegs doc think it’s disease related? If so, perhaps a stronger wegs drug is in order. Also, how fast are you tapering off prednisone? For most of us on here, slow tapers seem to go more smoothly.

    Good luck. Exercise gently and steadily and increase slowly. You’ll get better.
    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

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  11. #16
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    Default Re: New to Wegener world

    Hi Cathy,
    As your medicine decreases it does get better. High dose prednisone reacts differently on all of us. I think you will feel better once that is lowered. I am currently weaning myself down from high dose due to an infection. It gives me a patch of white corpuscle bumps on my face, that disappear as the medicine amount declines.
    I can’t address the amount of Methotrexate you are on. Before I started Rituxan infusions I was only on one a day.
    Walking would be good for all of us, but I am not an early riser and by the time I am up and out it is just too darn hot.
    You do get tired and cranky from the medicine. Prednisone is denying you your proper sleep and you end up exhausted during the day. Before Wegeners I was extremely active. Now my days are planned, limited and paced.
    Good question- the disease or the medicine? Probably both is my guess. Don’t put yourself under pressure. This is new to you. Just try to take one day at a time. Don’t expect to do what you used to do immediately. You will build yourself up slowly. Hang in there. Sending prayers and hope you way.
    Masha

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  13. #17
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    Default Re: New to Wegener world

    Quote Originally Posted by Masha View Post
    Hi Cathy,
    I can’t address the amount of Methotrexate you are on. Before I started Rituxan infusions I was only on one a day.
    Masha
    Hi Masha,

    I don't think Methotrexate is a daily pill. It's a once-a-week, cytotoxic chemo medication.

    Ed.

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    Default Re: New to Wegener world

    Thanks Ed,
    You are absolutely right about the Methotrexate. I am so glad you caught my error. I don’t want to put the wrong stuff out there. Too many pills, and I can’t keep them all straight. I am currently on high dose prednisone and that screws my mind up too. Today my poor husband got hell for moving my eyeglasses and they were on my head the whole time. Who’s on first, who’s on second.......
    Masha

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  16. #19
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    Default Re: New to Wegener world

    Quote Originally Posted by seied View Post
    Hi Masha,

    I don't think Methotrexate is a daily pill. It's a once-a-week, cytotoxic chemo medication.

    Ed.
    Hi Ed.
    I was on mtx once a day. My dr. Told me to take the pills everyday instead of all in the same day. Mtx didnt work for me after all. I wonder if it didnt work because of the way I took it although my dr assured me that it is not related.
    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.

  17. #20
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    Default Re: New to Wegener world

    Quote Originally Posted by Alysia View Post
    Hi Ed.
    I was on mtx once a day. My dr. Told me to take the pills everyday instead of all in the same day. Mtx didnt work for me after all. I wonder if it didnt work because of the way I took it although my dr assured me that it is not related.
    Hi Alysa,

    Someone please correct me if I'm wrong, but I don't think there's a protocol for daily Mtx.

    https://www.pharmacytimes.com/public...2/2005-02-9297

    Another:
    http://theconversation.com/weekly-do...en-daily-60322

    Ed.
    Last edited by seied; 08-18-2018 at 11:01 AM. Reason: Add info

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