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Thread: Reality Check

  1. #71
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    Hi everybody- I haven't been here in a long time. Besides my own stuff I also have a child that's going through some tough times. I was diagnosed a little over a year ago. I went to the ER for a pain in my left arm and thought it was maybe cardiac related. As part of routine procedure they did a chest x-Ray and came back and told me I had TB because I had some large cavities in my lung and one was a pretty good a size. I was quarantined immediately. I told them there was no way I had TB. I work with homeless families so we get tested every year and I had just had a negative TB test a month or 2 ago. Nothing was coming up in the blood work. There was talk of parasites, viruses, etcetera. Long story short it took about 3 months and three biopsies later to get a diagnosis. Wegeners but still the ANCA test was negative. I started treatment. Prednisone and methotrexate. Besides fatigue I felt fine. The Doctors said I should have been really sick given the holes in my lungs. Fast forward no change in the holes. No new symptoms, just fatigue which is making it really hard for me to go to work. Blood work is fine. Fast forward a little more and I'm off prednisone for a few months now. I'm having stiffness in my hands and knees and pain along the side of my legs. My finger tips are tingly and numb. I tell my doctor he says I have Carpal Tunnel in both my hands and he gives me braces to wear at night. He sends me to have blood work and I have a Vitamin D deficiency. Lhasa anyone had this happen or experience the same symptoms? I stopped working last June, the fatigue was too bad. Anyway. I just wanted to hear some of your experiences. Thanks- victoria


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    Victoria

  2. #72
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    Hi Victoria, Sorry your son is going through some tough times. That certainly makes things rough for you also.

    Are you still on the MTX? Have you had a CT of your lungs and are they stabilized? The tingling in your hands could very well be carpal tunnel and there are tests that neurologist can to do to make that determination for sure. The stiffness and pain in your knee and leg sound like it could be a flare. Have a doc evaluate the leg pain as we are prone to blood clots more than the average Joe. Fatigue is definitely a symptom of this disease.

    Are you seeing a good Rheumy that has experience with wegs? And a good Pulmonologist for the lungs?

    Some observations: If your lungs had holes as big as the docs say then I'm surprised they didn't go with a stronger drug regimen like Rituxan or Cytoxan. They are both much stronger than Methotrexate. There is probably no change in the holes because they have cavitated or the sides have collapsed in toward the center and they may no longer be active which would also explain why they went with the MTX instead of the big guns.

    Hope this helps in some small way and if you have any questions please feel free to ask. You might want to start your own thread under "general weg chat".
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


  3. #73
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    Thank you. I've had a few scans and have another scheduled for April 8. The holes haven't changed. When I was diagnosed I was feeling fine except for the fatigue. That's why they went with Methotrexate. But they didn't tell me I should be taking Vitamin D and a daily calcium supplement. I did take your advice and start my own thread. I think maybe it's time for a second opinion. Thank you!


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  4. #74
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    If I'm having symptoms while still taking methotrexate would that be considered a flare? Or more like treatment might need to change?


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    Quote Originally Posted by Victoriaitsnosecret View Post
    If I'm having symptoms while still taking methotrexate would that be considered a flare? Or more like treatment might need to change?
    Yes, on both counts. Maybe more than a flare if the mtx isn't working well or at all. Do you take pred? That can help with the symptoms. Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  6. #76
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    Thanks! I was taking pred but stopped maybe 3 months ago? At least I feel more prepared I talk to my doc.


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  7. #77
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    amen! I totally agree.

  8. #78
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    Quote Originally Posted by Dirty Don View Post
    Yes, on both counts. Maybe more than a flare if the mtx isn't working well or at all. Do you take pred? That can help with the symptoms. Best to you.
    If you haven't been in a stable remission for some period of time the doctors may just view it as a relapse and think that you just need a longer period of treatment. If you were in a long term remission my doctors would consider it a flare requiring a treatment change.
    Knowledge is power! Wisdom is using it to make good decisions!

  9. #79
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    Hi Victoria. Yes I've had weird pains on the sides of my legs too. Like a burn/ tingle/soar spot. We named them traveling soar spots because they seemed to move from leg to arm to wherever and stay for a few days then disappear. They occurred mostly when I was in relapse

  10. #80
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    Quote Originally Posted by Sangye View Post
    They were great doctors (except for the guy who belittled me-- he was a lousy doc all round), they just didn't know Wegs all its disguises. They don't understand that Weggies can look fine and be gravely ill. (Not that I looked at all fine. But because I maintain my sense of humor, it gives the impression that I'm in better shape than I am. Gravely ill people don't usually laugh)

    Even my Wegs doc said that unless a doc sees Wegs every day, they would have missed my flare.
    "They don't understand that Weggies can look fine and be gravely ill." I wholeheartedly agree. That'swhy we get very little understanding from the public at large.

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