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Thread: Hi all nice to meet you this is my story..

  1. #11
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    Welcome and I agree with Sangye, you need to get those feet straighten out. I was started on 60 mg of prednisone to keep the inflammation down. One of my many symptoms was chest pain. At least a 10 year history of chest pain.

  2. #12
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    I think this thread is acting up a bit...
    ~ Bob

  3. #13
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    Hereís my list of my symptoms, medicine and what we are expecting. And advice or stories would be appreciated.

    I am on advair and ventolin for asthma.

    Onadansetron for vomiting

    Omeprazole for indigestion

    Levoxyl for hypothyroid

    Prednisone- from 60 to 40 mg in three wks

    Zantac for indigestion

    Acidophilus for candidiasis

    Metformin for diabetes

    Ramipril for blood pressure

    Gabapentin for neuropathy

    Lortabs for pain

    My symptoms are sinus crap, head aches, swolen eyes and eye lids, rashes, joint pain, back, neck pain, muscle aches, tired all the time, fuzzy head, no voice, jaw hurts to eat, chest pain, chest tight, numbness tingling burning in left hand and both legs down to toes, left foot turning purple.

    I have had 4 rituximab treatments last one three weeks ago. Not a much better yet.

    Go to doctor on the 29th, he might start the methotrexate pills. And send me to neurologist for a nerve conduction study.

    So I donít know what to expect any comments???? Or advice????

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    Regarding meds:
    1) Hopefully you should be able to get off the asthma meds once the Wegs is under control. You definitely should see an ENT doc who specializes in Wegs for a scope of your trachea. Tracheal stenosis can occur with Wegs and is often misdiagnosed as asthma.

    2) You shouldn't need to be on both omeprazole and zantac for indigestion, but you must be on an acid-blocker while on high-dose pred. If it takes 2 meds to give you relief, ask your doc to try a different acid-blocker. Neither of those work for me, but pantoprazole does.

    3) Your left foot turning purple is NOT okay. That cannot wait another week. Does your doctor know about it?

    If it were me, I'd be on the phone today trying to get in to a Wegs specialist in SLC asap.

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    my asthma has been with me since childhood and works quite independently with my wegeners. Intersestingly to me was that heart burn meds were very helpful in controlling my asthma.
    lightning crashes
    leigh

  6. #16
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    Hereís my list of my symptoms, medicine and what we are expecting. And advice or stories would be appreciated.

    I am on advair and ventolin for asthma.
    Onadansetron for vomiting
    Omeprazole for indigestion
    Levoxyl for hypothyroid
    Prednisone- from 60 to 40 mg in three wks
    Zantac for indigestion
    Acidophilus for candidiasis
    Metformin for diabetes
    Ramipril for blood pressure
    Gabapentin for neuropathy
    Lortabs for pain

    My symptoms are sinus crap, head aches, swolen eyes and eye lids, rashes, joint pain, back, neck pain, muscle aches, tired all the time, fuzzy head, no voice, jaw hurts to eat, chest pain, chest tight, numbness tingling burning in left hand and both legs down to toes, left foot turning purple.

    I have had 4 rituximab treatments last one three weeks ago. Not a much better yet.
    Go to doctor on the 29th, he might start the methotrexate pills. And send me to neurologist for a nerve conduction study.
    So I donít know what to expect any comments???? Or advice????
    "My daughter is closer to me than my skin.. she is the arteries to my heart.. she is my life line.. The reason I breathe.."

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    Sounds like you still have activie Wegeners. I had the similar symptoms and they went away ( it took a two year for me to feel 95%). I was given two inhalers and I hardley use them. I agree I think you have wegeners..it affects your lungs and you need to get a pulmonary function test if you havn't yet. Make sure you call the doctor soon and regarding your foot.
    Last edited by elephant; 09-24-2011 at 11:50 AM.

  8. #18
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    Thanks.. I have not told him about the foot, i will call in the morning thanks agin. Let see what he says.
    "My daughter is closer to me than my skin.. she is the arteries to my heart.. she is my life line.. The reason I breathe.."

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    My doctor is Dr. Curry Koening at the UofU med center. He is fantastic! He leaves no stone unturned to get to an accurate diagnosis and treatment. See if you can't get your PCP to refer you to him. The UofU Vasculitis Center also works closely with the other disciplines at the university to get a good diagnosis. I think I saw a total of 4 (maybe 5) doctors while I was there. Great place! You are so lucky to be in SLC.....
    Wegener's (​GPA )- Apr10, Granulomatous Hypophysitis - Apr10, Diaphragmatic Paralysis - Feb16, Bradycardia - Dec16, Fibromyalgia - 2017. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

  10. #20
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    Just got back from the doctor. She said I will never be pain free.. And started me on morphine.. O and the tendon’s in my left foot and toes are shrinking??? WTH!!!
    "My daughter is closer to me than my skin.. she is the arteries to my heart.. she is my life line.. The reason I breathe.."

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