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Type: Posts; User: Happy Camper

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  1. Replies
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    Re: Covid vaccins and WG

    I currently take MTX and my doctor (Dr. Langford Cleveland Clinic) said to hold my MTX the week I get my vaccine. I'm scheduled for Friday for the moderna vaccine. I'm nervous to hold my MTX and take...
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    Just wanted to update everyone. By the time I got...

    Just wanted to update everyone. By the time I got an ultrasound the pain had disappeared and the ultrasound looked normal. But from what I told the doctor she thinks I may have granulomatosis...
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    Thanks Mishb. Yes I will definitely keep the...

    Thanks Mishb. Yes I will definitely keep the thread posted on this. I see doctor on 13th. Every time I think my Wegener's couldn't get anymore weirder, it does! LOL!
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    Wegener's involvemnet in the breast

    So they found a lump in my breast. It does not have any of the characteristics of cancer. I see surgeon in 2 weeks. I remember Dr. Langford ( from the Cleveland clinic) telling me about a year ago...
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    So sorry to hear this news! Phil was always so...

    So sorry to hear this news! Phil was always so helpful to me and everyone on this page. My thoughts are prayers are with you and his family!
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    Phil is in my thoughts and prayers.

    Phil is in my thoughts and prayers.
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    Thx for all your input. Its greatly appreciated....

    Thx for all your input. Its greatly appreciated. I started MTX last night. Going to give it another try. So far not too bad. But I'm only on 10mg, working my way up to 20mg. My rheumy told me I could...
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    Thanks for the tips on taking the MTX! I will...

    Thanks for the tips on taking the MTX! I will defiantly try splitting the doses if I feel sick from it again. I'm worried about hair loss and I do like to have the occasional few drinks. Which I'm...
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    Thanks. That's what they said about splitting the...

    Thanks. That's what they said about splitting the dose. I guess they think the MTX will help control my RA also. I hope so. Getting in remission was the easy part for me, now about 8 months of all...
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    Thanks for your response. I guess I'm going to...

    Thanks for your response. I guess I'm going to give the MTX another try. Starting at a lower dose and working my way up. Hopefully I can tolerate it better this time :)
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    Relaspse/Meds

    Hi everyone,

    I was diagnosed in 2010 with sinus/aggressive lung involvment, went into remission with Cytoxan/Pred. I was on Imuran for 3 years and relapsed Nov. 2013 with lung involvment. I had 4...
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    Thx, good to hear! I also just finished 4 rounds...

    Thx, good to hear! I also just finished 4 rounds of RTX and might do an infusion once every 6months or once a year.
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    Thank Rose. Glad to hear. I always like to hear...

    Thank Rose. Glad to hear. I always like to hear positive stories, it gives me hope! I'm also starting a generic form. It happens to be same generic that my Dad has been on for many years and he...
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    Positive Stories on Cellcept!

    So I'm starting Cellcept tomorrow. Of course I'm nervous, always am when taking new medication. I relapsed on Imuran and did not tolerate MTX. Is anyone else on Cellcept and if you could let me know...
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    Thx Jennifer for your response.

    Thx Jennifer for your response.
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    Thx everyone for all your input. Having WG can be...

    Thx everyone for all your input. Having WG can be so overwhelming at times. I'm just glad to be down to 5mg of Pred and am still tapering with a goal to be off it in 1 month. I think I'll start with...
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    Methotrexate VS Cellcept

    I had my 1st flare in Nov 2013 and did 4 treatments of iv Rituxan, and high dose pred. A repeat Ct scan showed lung nodules almost gone and I'm back in remission. yay! Now my Dr (Dr. Langford) wants...
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    Thanks! Your not kidding! My friends and family...

    Thanks! Your not kidding! My friends and family are talking about what they want for xmas. The only thing I want is a clear CT scan of the lungs. LOL! Have my scan Dec. 17th. Ha!
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    Hi Mike, I just ran into your thread and can't...

    Hi Mike,
    I just ran into your thread and can't believe I'm going through the same thing as you. I was in remission for 3 yrs and then on Nov. 9th they came back. Nodules in my lungs. Back on 60mg...
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    Glad to hear your off the Pred. hard to get off...

    Glad to hear your off the Pred. hard to get off that stuff. When I'm on large doses of Pred I try and drink alot of water and that helps cut down on the increase in appetite! usually 12 glasses a...
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    They sedate you and you won't remeber anything....

    They sedate you and you won't remeber anything. Its not bad. When they scope you at the ENT its more painful. I remeber my throat being a little sore after and tired!
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    Thanks for all your thoughts and kind words! My...

    Thanks for all your thoughts and kind words! My MRI came back normal, no lesion. Today I'm just happy to only have Wegener's :)
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    Thank you I appreciate it. I'm so nervous. I had...

    Thank you I appreciate it. I'm so nervous. I had MRI today and waiting on results.
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    Lytic Hip Lesion

    Hi everyone!

    So I'm having my 1st flare after 3 yrs in remission. Nodules growing in lungs again. Back on 60mg of Pred and Rituxan infusions. having some mild hip pain, that has since stopped. Dr....
  25. I'm currently having my 1st flare up. MY ANCA is...

    I'm currently having my 1st flare up. MY ANCA is negative. Its never even been positive. My diagnoses was confirmed by open lung biopsy. My sed rate was a little higher then normal 18. I have nodules...
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