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  • How long ???? Autoimmune Hemolytic Anemia

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    Old 12-14-2004, 07:31 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 01:00 PM.

     
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    Old 01-17-2005, 01:18 PM   #2
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    Re: How long ???? Autoimmune Hemolytic Anemia

    I am sorry to hear that you have AHA but I am glad to have found you. I was diagnosed in August of 2004 and have been pretty sick. My hemotologist put me on 60 mg of Prednisone at that time. I too had a hysterectomy in Oct. 2003 because of heavy periods. My hemoglobin dropped after surgery to 7. It finally did go back up to between 11 and 12 during the first part of 2004 but in August everything went crazy. I am told that my immune system is killing my red blood cells faster than my bone marrow can produce them. The prednisone was given to suppress the immune system and slow down the destruction of my rbc's. I have had terrible side effects from the Prednisone and the doctors are trying to get me off of it. I was put on Methotrexate but had unbelievable fatigue with it. I am now on Imuran. This week is my 9th week and am beginning to feel fatigued again. I have been taken down to 5 mg on the Prednisone and am hoping to get off of it soon. The Imuran is to keep my immune system suppressed so I can get off of the Prednisone. I have gained 35lbs on it! Did you have to go on Prednisone or any of the immunosuppressive drugs? I have searched the web over and just found someone else with this.......I am so anxious to hear from you. I read the other day that there are only approx. 3400 cases in the U.S.

    Last edited by but4grace; 01-17-2005 at 01:24 PM.

     
    Old 01-17-2005, 03:27 PM   #3
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    Thumbs down Re: How long ???? Autoimmune Hemolytic Anemia

    Hi but4grace,
    Glad to hear I am are not alone too! look on the anemia thread and you will read more about it...and to your question about meds...I am on 10mg prednisone every other day...I started at 80mg in the hospital when I was dx and I have tapered down to what I am on now...I have the side effects as well-and I hate it...I was losing weight when I was diagnosed and I have gained it all back so I can relate...I have hair above my upper lip...I swear I am growing a mustache...and I am freaking out about that! I have lost a job because of this in Oct 2004...I couldn't stop making stupid mistakes..Which is not like me, but now every thing makes since, anemia was causing me to forget the simplest things like spelling words. I thought I was just getting stupid but I literally couldn't think. It does SUCK! I just had another Cooms test last week and I still have the antibodies that causes this! I have an appt with my hemo doc tomorrow...my hemoglobin was at 13 two weeks ago and I am bruising again so I wonder if its going down again?. I am so glad to hear from you!
    I am not alone!
    Lori




    Last edited by lpears123; 01-17-2005 at 03:35 PM.

     
    Old 01-18-2005, 07:26 AM   #4
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    Re: How long ???? Autoimmune Hemolytic Anemia

    Lori,
    I truly understand about the mustache. I have sideburns! It is all very distressing. The weight is unlike normal weight gain and makes me so uncomfortable. I have clevage on my back! I told my son that I was going to be in the Guiness Book of World Records for having boobs on both sides of my body! My rings don't even fit anymore. I told my husband (through my tears) when I started the prednisone that I was going to be bald, fat, have a beard and a hump on my back! Well.......I'm fat, losing more hair every day, have sideburns and starting to get the hump. I know what you mean about the memory too......it's like you just can't concentrate. My job has been so wonderful to me. It seems like I'm constantly having to go to the doctor. Most of the time I do not feel like working but we have our health insurance through my work and we have to keep it. My husband was diagnosed in 2003 with dialated cardiomyopathy and congestive heart failure. It seems like that all we have done the last year and a half is take medicine and go to the doctor. And I thought this was supposed to be the best years of my life. My hemoglobin has been 12.4 the last two times I've had it checked. I have to go every two weeks for a cbc. I'm down to 5mg of Prednisone every day but I haven't felt good for about a week and a half now. I was awake alot last night feeling so bad. It seemed like when I would dose off that I would wake up gasping for air. I finally got up and slept the rest of the night in the recliner. I go back to the hemotologist tomorrow. I really pray that my counts have not fallen. I so desperately want off of this steriod. But even if they haven't I'm so afraid that my body is reacting to the Imuran and if I have to go off of it they will go back up on the prednisone. I'm am so tired of being tired. I have felt good only one week since August 2004. The worst part is most people don't understand because I don't look sick (most of the time). I'm sorry for complaining so much but I haven't had anyone who could really understand and I guess I'm just venting months of frustration. Thanks for listening, Lisa

    Last edited by but4grace; 01-18-2005 at 07:27 AM.

     
    Old 01-18-2005, 08:38 AM   #5
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    Re: How long ???? Autoimmune Hemolytic Anemia

    Hey but4grace,
    Which type of AHA do you have? I have Idiopathic autoimmune hemolytic anemia I know that you can get it from medication...did they tell you what type you have Hot-Cold? and another question do you have headaches with this? I am off to my hemo doc today...I'll let you know what he says
    P.S. how old are you...if you dont mind me asking...i am 34.

    Talk to you soon.
    Lori

     
    Old 01-18-2005, 07:25 PM   #6
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    Re: How long ???? Autoimmune Hemolytic Anemia

    Well I had my blood work done and everthing looks good...my hgb is at 12.9 ...So the tapering from the pred is working, I will have just labs my next appt in three weeks...then I get to wait a month!!!!! for the next Dr appt....much better than every two weeks...So I feel great!
    Lori

     
    Old 01-19-2005, 11:36 AM   #7
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    Re: How long ???? Autoimmune Hemolytic Anemia

    Lori,
    I also have idiopathic AHA. It is Warm IAHA. Is yours also Warm? Oh and are you on any immunosuppressive drugs like methotrexate or Imuran? Have they taken your spleen out or considered it? I am on Imuran.....I was on Methotrexate but it really made me feel BAD. When they took me off of it I was down to 7mg on the prednisone and my hemoglobin dropped to 8 so they had to take me back to 30mg on the prednisone. I was SO upset! I'm not feeling all that hot with the Imuran but I'm not complaining as long as my counts stay up because I want off of the prednisone so bad. No, I don't mind you asking my age. I am 41 years old. I have a son that is 21 and got married in October. Wouldn't you know it was just in time for my prednisone blow up. The pictures were just wonderful! I had 5 dresses the day of the wedding........I was so afraid that I would get up that day and not fit into anything. Talk about paranoid. I also have a son that is 18 and will graduate in May. I go to my hemotologist today. I hope all goes well with your appointment. Well I'm at work and I have to leave in approx. 15 minutes so I better get some last minute things done........will talk later, Lisa

     
    Old 01-19-2005, 01:28 PM   #8
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    Re: How long ???? Autoimmune Hemolytic Anemia

    Lisa,
    Yes, mine is the warm type also...I have 2 kids my daughter is 11 and my son is 6. The only meds they have me on are the prednisone and folic acid...I responded well to the prednisone so they kept me on it and I haven't needed to use anything else...and I cant wait to get off of it! my face is soooo fat looking! I cant stand it and my spleen is still here...for now...I went to them hematologist yesterday and my hgb was at 12.9...so its staying around the same with 10mgs every other day and folic acid 3 times a day so that's cool,,,I don't have nearly the same side effects as I did while on the larger dose...not constantly eating Have they ever redone the cooms test to see if you still have the antibodies...well I am sure you do if your levels are still low...what state are you in ...I am from MN and we have great doctors here...let me know what your doctor says...Bye
    Lori

     
    Old 01-20-2005, 01:37 PM   #9
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    Re: How long ???? Autoimmune Hemolytic Anemia

    Lori,
    I do not have Rheumatoid Arthritis. My Hematologist sent me to a Rheumatologist to see if there was an underlying autoimmune disease causing the AHA. You can have either primary AHA or secondary. They thought at first I had Lupus but all the test results came back negative. They are treating me for Sjogren's syndrome even though I don't have a definite diagnoisis for that either. I take ELEVEN pills a day! I wasn't taking anything until I got sick. My hematologist is wonderful and I trust him immensly although the Rheum. is another story. But I'm trying to give him a chance ...he doesn't have a good bedside manner. Well it's almost time for me to leave work..........we'll talk later. see ya, Lisa

    Last edited by but4grace; 01-20-2005 at 01:44 PM.

     
    Old 01-31-2005, 05:59 AM   #10
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    Re: How long ???? Autoimmune Hemolytic Anemia

    Lori, Where are you?

     
    Old 02-02-2005, 04:12 PM   #11
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    Re: How long ???? Autoimmune Hemolytic Anemia

    but4grace,,,Sorry I haven't been on lately...I started a new job so I have been very busy...How have you been?

    Lori

     
    Old 02-03-2005, 07:03 AM   #12
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    Re: How long ???? Autoimmune Hemolytic Anemia

    Lori,
    I am so happy my counts were pretty much the same and my hematologist took me off the prednisone!!!!!!!!!!! I'm still on the Imuran which is what he believes is keeping my counts up. He said if my hematacrite fell at all that he would have to put me back on the prednisone. Maybe I just shouldn't go back ......well I guess that's not an option but I'm am praying REEEAALLLY HARD that I never have to go back on that stuff... I also hope I can come off of the atenelol now. I was taking it because the prednisone made my heart race. I still don't feel that great which is discouraging since my hemaglobin was 12. But I know it's the Imuran and I'm trying not to say anything until I'm sure I can stay off the prednisone. I'm glad to hear from you. I was afraid you had fallen off the face of the earth. LOL. What kind of job did you get? I better go.....I'm at work and my wonderful husband just sent me a dozen roses for my birthday! How are you feeling? I hope everythings fine with you. Talk to you soon.....I hope! Lisa

    Last edited by but4grace; 02-03-2005 at 07:05 AM.

     
    Old 02-08-2005, 05:10 AM   #13
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    Re: How long ???? Autoimmune Hemolytic Anemia

    but4grace....still here just busy.
    I am having a blood work done today so I will get back to you with the results
    I hope all is well
    Lori

     
    Old 02-10-2005, 12:26 AM   #14
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    Re: How long ???? Autoimmune Hemolytic Anemia

    Lisa, where did you read the information about how many case of AHA in US? Thanks Kath

     
    Old 02-10-2005, 06:09 AM   #15
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    Re: How long ???? Autoimmune Hemolytic Anemia

    Kath,
    I don't remember I've been on the web researching so much since I was diagnosed in Aug. 2004. I do know that I found it recently.....like in the last month. I'm sorry for being so vague........just can't remember. If I come across it again though....I'll let you know. Are you Warm or Cold AHA?
    see ya, Lisa

     
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