Anyone have or heard of ALPHA-1 ANTITRYPSIN DEFICIENCY??

Discussion in 'Fibromyalgia Main Forum' started by angiecw71, Sep 26, 2006.

  1. angiecw71

    angiecw71 New Member

    Has anyone heard of this or have it. Unfortunately I have been having liver problems and my doctor sent me to a GI Doctor last week. He called me this morning personally and told me I have Alpha-1 Antitrypsin Deficiency; which can cause cirrhosis of the liver and COPD or Emphazyma. He is going to have the nurse call and make me an appt. for a liver biopsy to check for cirrhoiss.

    I got an appt. with my PCP tomorrow and I am going to have her send me for an x-ray of my lungs. I do have asthma and a lot of upper respiratory problems. I would appreciate any info that any of you may have..

    Thanks,
    Angie
    [This Message was Edited on 09/26/2006]
  2. kirschbaum26

    kirschbaum26 New Member

    Dear Angie:

    Your situation sounds just like mine...but I have not yet gone to a GI doctor. I have terrible problems with my liver. I have asthma. I have had lots of infections in my lungs. Was told this summer (when I had pneumonia again) that my lungs have lots of scarring that showed up on the x-rays. Doctor asked if anyone had told me that and I said no. My PCP was going to have a radiologist read the x-rays, but I have not heard from her and have an appointment in about 2 more weeks.

    I had to have a liver ultrasound. They said I had a "fatty" liver due to the meds I have taken over the years. I do not drink. I cannot take many meds (I have RA as well) due to my lousy liver enzymes...so I am really stuck. I have been having terrible problems with many different organs and while my Rheumatologist says that they are all part of RA (I seem to have a severe case all of a sudden, and it is not responding to the meds I have tried, including ENBREL, HUMIRA).

    I just wondered what other symptoms you might have? I have a long list of foods that I do not eat, as they cause me terrible pain. Anything acidic (like tomatoes, sauces, etc). I will do a search on what you were told you have and see if it makes sense to me.

    Good luck, and I would love to hear what your GI doctor intends to do. Did you get a diet that would help you out?

    Just curious.

    Ingrid

  3. angiecw71

    angiecw71 New Member

    It does sound like you may have it. I had no clue what is was never even heard of it til 7:15 this morning when the GI doctor called. Ask you doctor to test you for Alpha-1 Antitrypsin Deficiency. Because the symptoms you have are syptoms of the Alpha 1.. I will let you guys know when I go for my liver biopsy, they are checking for cirrhosis etc.

    Angie
  4. KerryK

    KerryK Member

    I too have the deficiency, though the heterozygous form that is not expected to cause lung disease if I stay out of smokey environments. There is a very good treatment now with gammaglobulin injections that will halt the course of the disease. It is interesting that there was an article somewhere in the past that showed people with this deficiency and FMS had their FMS symptoms clear up with the gammaglobulin treatments. It was speculated that the antitrypsin has an anti-inflammatory role.

    Good luck!
  5. angiecw71

    angiecw71 New Member

    Thanks for that info. because of what that dr. said this morning he sounded like there is nothing that they can do for that. So I will definitely be checking into that.

    Thanks
    Angie
  6. angiecw71

    angiecw71 New Member