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  • New here, iron infusions again?

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    Old 01-07-2009, 07:37 PM   #1
    multipleAInancy
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    Post New here, iron infusions again?

    Hello all, I am going downhill rapidly and even though I'm an eternal optimist, I'm beginning to feel a deep forboding. I have many autoimmune diseases including Myasthenia Gravis and Addison's. I guess the third most serious is a very rare type of glaucoma (1/million) that is AI and moving fast. All of that aside.....I am once again iron depleted and anemic. Less than two years ago I took high dose iron for 9 months then had a bone marrow biopsy which showed zero iron stores followed by iron infusions. The past 2 or 3 months I've become progressively weaker and sicker....sure enough....I'm back there again. Saw my internist, hemo (iron infusions planned), gastro today to set up EGD (Monday) and will be doing a stress test Wednesday (very short of breath). Also possibly an abdominal CT. The consensus right now seems to be iron deficiency of undertermined origin or of Chronic Disease or Aplastic Anemia. Funny, I never knew there was danger in iron infusions until recently. I did have an incident the first time where pain began in every joint and my chest which escalated with each heart beat. The nurse had walked out and I had to call out. She slowed the rate and it de-escalated at the same rate. Kind of spooky now that I think about it. Didn't have any more problems after that. My home health nurse who does IVIG infusions for me once a week is very uneasy about the iron infusions and not happy that I'm going to be doing it again. My unease is more to do with what is causing the problem. Thanks for listening. Any thoughts or advice would be welcomed.
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    Old 01-10-2009, 09:38 AM   #2
    FLFLOWERGIRL
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    Re: New here, iron infusions again?

    The first thing to do is to rule out any blood loss, even if they think that it may be Anemia of Chronic Inflammation/Disease. Next, perhaps a good Rheumy would do if the Hematologist doesn't find a cause. Don't stop looking!! Best of luck to you and keep us posted. FLFLOWERGIRL

     
    Old 01-10-2009, 02:21 PM   #3
    multipleAInancy
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    Talking Re: New here, iron infusions again?

    Hi there, Thanks for the concern and response. The ball is rolling. I am to have an EGD here in Conway, AR, Monday a.m., then travel to UAMS in Little Rock (about 25 min. drive) for the fist of 8 weekly iron infusions. Then Wed. a.m. I will do my weekly IVIG infusion (at home) followed that afternoon by a treadmill test at my cardio's office in Conway. The Gastro is also having me do hemocult tests to turn in to his office. If we don't find anything he is planning an abdominal CT. My new PCP, a young internal medicine doc who is GREAT, is very concerned and says I'm in a crisis and we must get it figured out ASAP. All of this gives me hope that we will locate the problem and that there is an answer. I will let you know what happens. Thanks again and I'm so glad I found this message board. Nancy

     
    Old 01-11-2009, 08:31 AM   #4
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    Re: New here, iron infusions again?

    Nancy--That sounds like a great plan and you have good doctors behind you. It's a lot to go through, but it's over quick enough and you have more answers. Best of luck to you and keep us posted. FLFLOWERGIRL

     
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