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  • How long ???? Autoimmune Hemolytic Anemia

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    Old 12-08-2004, 10:36 AM   #1
    lpears123
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    How long ???? Autoimmune Hemolytic Anemia

    I was just diagnosed with Idiopathic Autoimmune Hemolytic Anemia in Nov with my hemoglobin of 4 with every symptom that having a level of 4 would have created...thought I was having a heart attack at the age of 34...my hemoglobin is now just over 13...I would love to hear from anyone who has had this and if it has come back? If it did what should I look for in the symptoms? I know I have had this for awhile it was a very gradual process for me, I know my hemoglobin was 10 back in February when I had a hysterectomy I found that I had antibodies when they typed my blood...my Dr thought it was low from the blood lost I was having, (part of the reason I had the hysterectomy...heavy periods and endometriosis) and after my 6wk check it was up to 12.
    Any advice would be appreciated.
    Thanks

    Last edited by lpears123; 12-08-2004 at 11:00 AM.

     
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    Old 12-18-2004, 01:14 PM   #2
    cmmm47
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    Re: How long ???? Autoimmune Hemolytic Anemia

    Symptoms of anemia increasing are increasing easily tired, fast pulse and easily short of breath. If this goes on for another time you should easily be able to tell the run down feeling.

     
    Old 12-20-2004, 12:39 PM   #3
    lpears123
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    Re: How long ???? Autoimmune Hemolytic Anemia

    Thanks for a reply...finaly someone did !
    I am really wondering if anyone has had it come back...I am finaly down to 10 mg's of pred and I have a doc appt tues...If my hbg is still good he will drop it to 5 mg's a day or 10 everother day which is really GREAT as I hate the side effects but I am scared that it will come back the lower it goes...has anyone had this happen?

    Thank's a lot !!!!

     
    Old 01-05-2005, 09:33 PM   #4
    BlueBelle2
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    Re: How long ???? Autoimmune Hemolytic Anemia

    Hi-I have had AIHA since 1998. I felt just as you described in your first post. Thinking I was going to have a heart attack at 38. Unable to walk across the room. When I finally went in, the nurse said I looked anemic, the doctor ordered tests stat and found my hematacrit was 18. I was put on the prednisone at 80 mg and tapered down. It took 6 months to get completely off of it, once I got down to the 5 mgs, it was a little harder and I had to taper slower. I was fine afterward, my hematocrit stayed up around 36-39. This past June, I had bloodwork done and was very surprised to see my hematocrit was down to 29. I felt fine, but I started to notice little things like I had no color in my hands or nails. My eyelids and gums were grayish/pale.

    I foolishly thought it was a one time thing...nope. it's something I need to have checked for the rest of my life. I'm at 5 mgs now, since Aug. and he said it may take a bit to get completely off, I told him if it meant I wouldn't relapse I'd be OK staying on it as a maintenece dose. My crit has been good, staying right at 39-40. We'll see. I go in again next week.

     
    Old 01-06-2005, 08:45 AM   #5
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    Re: How long ???? Autoimmune Hemolytic Anemia

    Hi, when you said you felt like you are having a heart attack, how does it feels? Chest pain across the chest? How does the anemia makes you feel that way? Is it due to the low oxygen in your body? Will someone be able to stop taking prednisone if their symptoms or blood level is good?

     
    Old 01-06-2005, 10:40 AM   #6
    BlueBelle2
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    Re: How long ???? Autoimmune Hemolytic Anemia

    Not ever having a heart attack - I didn't know what was going on. With any type of exertion, just walking a few steps, my heart hammered. My limbs felt weak. I couldn't lift anything without feeling weird, my lower legs hurt. With so little oxygen getting into your system, the heart had to work harder to pump and thats why the limbs felt funny too.

    I was able to get off the pred. after 6 months of tapering with my first bout in 98. Once it got lower to 5-7.5 mgs I had to go slower. Right now, I'm on 5 and doing well-will see what the doc has to say next week. I've been on it for 6 months. I may just stay on it if it will help prevent a relapse. Thats fine with me because it's such a tiny dose.

    Last edited by BlueBelle2; 01-06-2005 at 10:42 AM.

     
    Old 01-07-2005, 12:02 PM   #7
    lpears123
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    Re: How long ???? Autoimmune Hemolytic Anemia

    Thanks so much for your replies... I was looking over the first of the blood work that they did when they admitted me to the hospital and my hemocret was at 14.1 and it was up too 22 after my blood transfusions...and has stayed at about 32 since...I had a coombs test done on Tuesday and its still positive but my hemo doc said its really hard to get rid of the antibodies that cause AIHA " It could take years or never go away"...so as of now I am on 10mgs every other day.

    As for the symptoms that I had before getting dx's were just like you said bluebell ...on Halloween I had to call off trick or treating after only walking 1/2 of a block and it took me about 5 minutes to just walk back to my house...thank god my husband was with or my little ones would have not been able to go...My limbs were as you said "WEAK" and the heart attack feeling was...you couldn't breath and you hear your heart beat...blood flowing thru your veins and it feels like your heart it going to pop out of your chest...I thought I was either having a heart attack or a panic attack, you cant catch you breath...it was very scary...let me know how your blood work turns out...
    Thanks again.
    Lori

     
    Old 01-13-2005, 01:49 PM   #8
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    Re: How long ???? Autoimmune Hemolytic Anemia

    Had bloodwork done yesterday, my hematocrit is 43. Wow! It has never been that high. Hgb is 14.7. Feeling good, except for this cold and coughing. Now I'm on 5 mg pred. everyother day

     
    Old 01-18-2005, 08:46 AM   #9
    lpears123
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    Re: How long ???? Autoimmune Hemolytic Anemia

    bluebelle,
    I am so glad things are getting better for you

    If you could look at the blood disorder board under this thread...I found another one of us...under " but4grace" is her log in name.

    Thanks,
    Lori

     
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