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  • Hemolytic Anemia

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    Old 01-31-2005, 08:51 AM   #1
    SIC&TIRED
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    Hemolytic Anemia

    I have been diagnosed with this problem and it amazes me that no one tried to find the root cause, they only treat symptoms. Are there any MDs that are doing current studies on the casue to Hemolytic Anemia. Also, what works? Prednisone is not helping and I am not ready for a spleen removal.
    Can anyone tell me about any progress they have made when having this disorder. Where are the MDs that are treating this with success? Thanks Kath

     
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    Old 02-03-2005, 06:14 PM   #2
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    Re: Hemolytic Anemia

    Hi SIC&TIRED, I was diagnosed in November...And I also find it strange that it is idiopathic..."reason unknown"...but I guess its just that?
    I have had luck with prednisone...if you want to call it that! I have had really bad side effects from it like most...I am turning in to a hairy fat woman since I have been on it. When I was in the hospital I was on 80mgs and 3mgs of folic acid a day my hematologist has tapered me down to 10mgs every other day and I am still on the 3mgs of the folic acid. My hemoglobin was at a 4 when I was diagnosed and I needed 4 blood transfusions but now my hemoglobin was at 11.8 3wks ago and on the 8th I will go in for another blood test. I know how frustrating it is not knowing why we have this...I was kind of obsessed with it after I found out I had it i would look on the internet for hours, That's how I found this site! Although its a pretty rare disease its nice to know we are not alone...look on the "Blood Disorder" thread and you will know what I am talking about. How long have you had this? like I said I just found out in November but I know I have had it a lot longer than that.
    Hope to talk to you soon
    Lori

     
    Old 04-03-2005, 10:35 AM   #3
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    Lightbulb Re: Hemolytic Anemia

    Hello Lori and sick&tired,
    It seems verry strange that no one is searching for the cause of the hemolitic anemia. I also have it, since birth. I have a metobolisme disease ; pyruvate kinase deficiŽntie. It is possible that people have lived a perfectly normal live and when they get older (any age from 20 to 40) the disease shows itself. I can't say that your cause off hemolitic anemia is the same off- course but it's one off the many causes I think.
    I don't know if anyone told you the side effects from the hemolitic anemia, but it is possible that your iron is high and that can be a risk. The iron gets high because te red bloodcells are breaking down and the iron is getting loose in the body (hemachromatoses). It might be handy to ask your doctor to search for the cause allthought it doesn't mean it can be cured. The iron overload is treatable the hemolitic anemia - in my case - is not.
    Good luck on the road to answers and I hope you still can find some joy to your life despite your disease!!!
    Greetings from Holland,

    Maaike

     
    Old 04-11-2005, 08:18 PM   #4
    Les44
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    Re: Hemolytic Anemia

    Hi all. I was as diagnosed with "idiopathic hemolytic anemia" early February. I truly had no idea how rare this really is. Found a website that claims only 400 cases/year in Canada and 3,400 in the U.S.

    Last edited by Les44; 04-12-2005 at 07:07 AM.

     
    Old 04-12-2005, 04:28 PM   #5
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    Re: Hemolytic Anemia

    Re: Hemolytic Anemia
    I was diagnosed almost five years ago. I was glad to find this site because so many times I felt I was alone with this disease. There are times it goes into "remission" and my lab counts are normal, but there have been times that it really got scarey. Last August I had a hemolytic crisis and was in the hospital l5 days before it got turned around. At present I am on 40 mg prednisone, my hemoglobin is okay but very low platelets. Of course I have all the bad side effects from the prednisone but now I know that NOT taking it is not an option. This is a terrible disease and I wish no one had to have it, however I am glad that I found this site and others to relate to.

     
    Old 04-22-2005, 05:06 PM   #6
    JPFROMTO
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    Re: Hemolytic Anemia

    Hi There..i Am Glad I Found This Site ..i was Diagnosed With Hemolytic Anemia For Approx 14 Years Now..i Have Had A Splenectomy, Been On Various Doses Of Prednisone, And Now Receive A Combination Of Prednisone 12/mg Every Second Day, And Also Receive Immuniglobilin Every 3 Weeks..this Combo Was Working For About 4 Years And I Have Now Had A Major Relapse Which I Can't Figure Out..i Wonder Do Others Have These Major Relapses And How Do You Handele It..my Dr Has Just Put Me Through 4 Days Of 40 Mg Of Decatron (type Of super- Corticoseroid dose) And 50 Mg Per Day Of Immunoglobulin To Stablize The Hemolyis And We Are Waiting To See If It Works..i'm Trying To Maintain A Normal Life But Find It Difficult..i Wonder If Others Are Also Experiencing Relapses And What Other Approaches You May Have Used And If They Have Worked. I already have had the negatives of steroids such as diabetes, and osteperosis..Is there any hope out there? i would really like to avoid going on stronger immunosupperants such as imuran or cytoxan..wonder if any of you have had better success with other medicsuper ations?

    Last edited by JPFROMTO; 04-22-2005 at 05:11 PM.

     
    Old 04-22-2005, 06:18 PM   #7
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    Re: Hemolytic Anemia

    Oh, great! I'm scheduled to have my spleen removed on May 4th. Diagnosis: Pancytopenia. I having got past being in ICU, a NG tube, and a catheter. No one mentioned Prednisone and relapses! Holy crap!!!! chris

     
    Old 05-06-2005, 11:42 AM   #8
    Les44
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    Re: Hemolytic Anemia

    My last lab results show everything is normal . Down to 2.5 mg/day prednisone for the next 30 days then off, assuming no changes in condition. I'm a bit confused though. I have to go for the Coomb's test to see if my rbc are still covered in antibodies. So if the test is negative does that mean I'm cured? Not sure if the test is positive if I will have to go back on the prednisone
    Anyway, I travel abroad quite often for work and have been told by the doc that it's risky to continue even if there's no sign of the anemia. What happens if there's a relapse, ie return of hemolysis? Can anyone tell me what to expect, ie how quickly does it come on and how severe?
    Appreciate any feedback.

     
    Old 05-21-2005, 03:49 PM   #9
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    Re: Hemolytic Anemia

    Hi everyone. I just joined today. My reason for joining is my 10yr old son, was just diagnosed Wednesday May 18, 2005 wth the idio autoimmune hemolytic anemia. What a shock to us. His levels are 6.4 and 17.5 . They say he is stable and discharged him from the hospital, no course of treatment has been set up, except he is to have cbc, w/ platelets, and something else, (Can't recall)every Monday and Thursday. He is to go to the hematology clinic once every two weeks. We live 2 hours from the clinic. he is bummed as they have put a stop to all sprts, and his has a cold antibody so he is not allowed outside when it is below 50 out. Well we live in an area where nights are still in the mid 30's and days barely hit 50's. So we are trying to do as much indoors as possible. Are there any others on here because their children have this and not themself?

    Angie

     
    Old 05-21-2005, 11:45 PM   #10
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    Re: Hemolytic Anemia

    Prednisone?? Eeeeeek!!! Is that the best drug they can find for you?? It's OK for short periods (like two weeks) a few times a year, or if you're in Stage 5 cancer and it's just a matter of keeping you comfortable. But it is one dangerous drug if you just keep taking it day after day. I'm afraid I don't know what hemolytic anemia is. I've got iron deficiency, which is no picnic either, but at least there's a light at the end of the tunnel.

     
    Old 05-22-2005, 12:01 PM   #11
    Les44
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    Re: Hemolytic Anemia

    Kerry1,

    Unfortunately Prednisone is the drug of choice, at least first defence drug, for those of us suffering with hemolytic anemia. This is a treatable condition but it is a disease that we have for the rest of our lives. The lucky ones finish the prednisone treatment and never have a relapse. Unfortunately there are quite a few that just can't get off the prednisone without going into a hemolytic crisis or some that finish the prednisone and have a relapse years later. They then face more drugs and often times the spleen is removed. Take a look on the blood disorder thread. There's a topic there for "autoimmune hemolytic anemia". Should make for some interesting reading for you.

     
    Old 06-01-2005, 08:33 PM   #12
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    Re: Hemolytic Anemia

    Hi Everyone I'm Jae, AIHA battler for about 8 years now. But they've decided to try something new this time for a change. I have been on prednisolone for ages since IT came back and was weaning again gradually with imuran but my counts dropped so they had to top me up with some intragam and some meth....something or other. Next week they are going to give me Rituxan. $16000 worth. I have to have it over 4 weeks and am a bit scared of the effects. The medication isn't cover here in AUS but the doctor sourced 4 free treatments. Has anyone had this? I here it could possibly make it go away for a few years. Looking forward to chatting with you guys. Jae

     
    Old 06-02-2005, 06:54 AM   #13
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    Re: Hemolytic Anemia

    Jae,
    I suffer from this myself and have had this treatment. If you read under the post How long ???? Hemolytic anemia. You will find some great people and stories about this disease to read.

     
    Old 06-05-2005, 05:22 PM   #14
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    Re: Hemolytic Anemia

    Thanks AngelIndisgse. I go in for my treatment on Friday don't know how it's going to effect me though so I am a bit scared. But hopeful at the same time. I have to take the day off school though... but I'm lucky holidays are coming and I don't have to take any more days off for the following 3 treatments. Trying to keep my job and kids happy and this treatment is difficult. Thanks for listening Jae.

     
    Old 06-14-2005, 07:24 PM   #15
    mishamom
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    Re: Hemolytic Anemia

    Hi all. This is my first time here. We recently found out my daughter (3 1/2 years old) has AIHA. And boy do I have questions!!! I've learned alot just from reading your posts here, but the one thing no one has mentioned is this...

    Is it normal with AIHA for your RBC counts to stabilize before your reticulocyte (sp?) counts do? The reason I'm asking is that my daughter was started on prednizone and responded favorably. The dr has started to wean her off of it and we get blood tests about 2x per week to make sure she's still ok. Her RBC count is 12.8 now, but her retic count, which was down to 4, has been climbing again over the past 1 1/2 weeks - it's now around 7. They've lowered her dosage again (to 10mg 2x per day) even though the retic count is not steady or falling.

    Also, are there any signs that someone might have a recurrance in the future? Like having had a particularly bad 1st episode? Or an early childhood episode? Just trying to arm myself with as much knowledge as I can.

    Any info/ideas would be greatly appreciated! This is all so new to us.

    Thanks in advance, Michelle

     
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