I Have Autoimmune Hemolytic Anemia

A Autoimmune Hemolytic Anemia anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Autoimmune Hemolytic Anemia. You're not alone. 149 People

    My Beautiful Son

      I am not sure if it would be ok for the mother to join this website. The one who was diagnosed was my three and half...
    jodiecam76 jodiecam76
    31-35
    7 Responses Aug 12, 2008

    Anyone Have Success With A Splenectomy?

    I have been anemic for years. After two bone marrow biopsies and a colonoscopy to find a reason, my doctor finally diagnosed my anemia as autoimmune hemolytic anemia. I took two different rounds of steroids. Those helped to raise my hemoglobin level. But the number fell again...
    CB57 CB57
    51-55
    5 Responses May 28, 2012

    Has Anyone Tried Low Dose Naltrexone For Ahia?

    Hello I am a 34 y o mother of 2 diagnosed with ulcerative colitis (2007, during my first pregnancy) and with AHIA (September 2012, whilst pregnant but I had a miscarriage). I was given prednisolone and lots of blood transfusions (my haemoglobin was 4.7 when I got hospitalised...
    34yoF 34yoF
    36-40
    1 Response Apr 14, 2013

    Autoimmune Hemolytic Anemia!

    About 6 years ago I was diagnose with aiha, I collapsed while at work,  with a blood pressure of 245/135 due to chronic anemia., I was having a stroke due to not enough oxygen getting to brain, My hemoglobin was 4, I needed 6 units of blood. I felt fine never knew that I was...
    lawandasa lawandasa
    41-45
    1 Response Aug 11, 2011

    New To Aiha And Need Some Advice

    I am 50 years old and just diagnosed with AIHA in May. the disease appeared to come on suddenly, however in looking back, I had a lot of symptoms that did not add up at the time, but when put together should have been obvious. Symptoms like extreme vertigo, headaches, brown...
    rtayman925 rtayman925
    46-50
    8 Responses Aug 23, 2011

    Finally Getting Rituxan For My Aiha

    Friends, After some struggles with my health insurance provider, I was finally approved to have a round of Rituxan for the AIHA I developed this year. I have had 3 of 4 treatments. So far so good. I am hopeful. I am looking to read about other's personal experiences with...
    lltowery lltowery
    46-50, F
    4 Responses Nov 14, 2012

    Aiha

    I have been struggling with AIHA for over a year. My first diagnosis was made after my hemoglobin dropped to 6. 2 blood transfusions and a 4 day hospital stay I was sent to a hematologist. He immediately diagnosed me with AIHA. After being on prednisone for 6 months my spleen...
    Mrsmlew Mrsmlew
    36-40
    3 Responses Apr 19, 2013

    Diagnosed 10.05.2013

    Hello. ! I have had this "disease" most likely for few months... without knowing about it. I have had fibromyalgia and was always thinking that all the tiredness was therefore. I just kept on going and going working and doing everything else there had to be done. Finally I saw...
    Icelandicvon Icelandicvon
    41-45
    1 Response Jul 17, 2013

    Early On, But Hopeful...

    This past August 09, my wife thought my eyes looked a little yellow, I noticed a few odd coloured urines and five days later I started to feel fatigued so I went to a walk-in clinic.  The Dr. immediately noticed I was severely jaundiced, and sent me directly to the Hospital...
    UnexpectedJourney UnexpectedJourney
    36-40, M
    7 Responses Sep 26, 2009

    Fully Recovered - I Think!!

    I posted my story with Ideopathic Autoimmune Hemolytic Anemia (IAHA) back in Sept of 2009 and have posted a few updates along the way. Here is my update as of May of 2011. It's now been almost 2 years since my ordeal started, and I'm very happy/fortunate/thrilled to report that I...
    UnexpectedJourney UnexpectedJourney
    36-40, M
    4 Responses May 9, 2011

    I'm A 17 Year Old Girl With Idiopathic Warm Autoimmune Hemolytic Anemia. Is This My Life?

    On Friday, April 1st, 2011, I started feeling bad. At first I thought it was allergies, and then I thought it was a cold. I stayed home from school (community college classes) on Monday, and went to my nanny job on Tuesday, thinking it was allergies. On Wednesday I was tired and...
    soontobewell soontobewell
    16-17
    5 Responses Jun 15, 2011

    My Daughter Has Aiha

    My daughter was two and a half when my husband and I brought her to the children's hospital er because her coloring of her skin and eyes where yellow! Her hemoglobin was at 3.9 so they gave her a transfusion and put her on predisone steroid and sent us home three days later...
    Goawaycoombs Goawaycoombs
    31-35, F
    Jul 11, 2012

    Never Heard Of Anything Like This Disease

    I was diagnosed with AIHA on 03-29-10. I had been working a lot of overtime for my job and was feeling tired, and figured that was the cause.. Then I started getting more symtoms...heartbeat in my ears, slight headache, light flashes when I was walking or standing...
    Janke129 Janke129
    51-55, F
    5 Responses May 10, 2010

    AIHA Diagnosed At Age 15, In 1999. Tired Of Being A Lab Rat.

    I was diagnosed in October of 1999. I was 15 at the time, in tenth grade. I had seen my doctor several times in September, I felt blah, and horribly tired. Finally after my grandmother made me go back again, because I was so horribly pale, they had labs done, and I was...
    TwistedNic TwistedNic
    31-35, F
    Jul 30, 2013

    Sudden Panic

    On December 1, 2009 my world was turned upside down in a matter of minutes.  My 4 yr old daughter was running a temp of 103 degrees for most of weekend so that day was like any other so we thought.  She woke with a fever and we treated it like we had most others. ...
    tu2girly tu2girly
    36-40, F
    3 Responses Dec 27, 2009

    3 Years And Counting...

    I was working full time as an RN, a single mother of two, and riding my bicycle back and forth to work every day.  I had just turned 40 and felt great!  Two months later, my hemoglobin was 56, I was jaundiced, and admitted to hospital.  Quite a shock, I can tell you!   Over...
    RNjojo RNjojo
    41-45
    3 Responses Dec 11, 2011

    Waiting For Successful Treatment

    I was diagnosed with Warm Auto Immune Hemolytic Anemia in November 2010. I have been taking Prednisone at various amounts since then. At high doses, my hemoglobin level rises. However, the side effects are terrible - weight gain, swollen face and neck, as well as mental confusion...
    slo459 slo459
    51-55, F
    3 Responses Jan 5, 2013

    Stay Positive

    i got AIHA in year 2000 .... i was 14 that time .... first i got jaundice with malaria and my hemoglobin went down to 2.5 .... i was given blood 4 times and then was put onn prednisone .... since then i am on steroids and may be for my life i will be on them .... in between...
    vk000 vk000
    22-25, M
    1 Response Jul 26, 2012

    AIHA A Slow Road To Answers.

    Well where to begin ,Reading through other peoples stories has confirmed my assumptions that we are just medical experiments as little is known on how to stop or cure this disease. I was first diagnosed with AIHA in 2010. I was admitted to hospital with an Hb of 40, walking...
    Boxer19 Boxer19
    51-55, M
    Sep 8, 2013

    Shortness Of Breath - Turns Out To Be: H E M O L Y T I C A N E M I A!

    Truthfully, I don't know exactly when the sob started. But I do know that just getting up from my couch and walking 4 feet to the kitchen and having to quickly go sit in the chair by the kitchen table trying to catch my breath seemed like I probably just got up to quickly! Huh...
    sunnyhasone sunnyhasone
    66-70, F
    1 Response Jul 4, 2012

    AAHA During Pregnancy.

    Hi, my name is Dagmar, I am originally from Berlin Germany, but been living in the USA since 1981. Here is my story. This happened in 1979 in Berlin. I was about five months pregnant with my second child. Been going to all my check ups and even had my blood drawn a week prior to...
    tannenbaum tannenbaum
    56-60, F
    2 Responses Nov 22, 2013

    AIHA Research Or Awareness Groups?

    Hi, I was wondering if anyone knew of any good research fundraiser or public awareness groups for AIHA? I'd like to get involved with one, as I'm tired of feeling like a lab rat with no options. I haven't found any so far, there's not much awareness about the issue. Thanks in...
    mhannahjones mhannahjones
    22-25, F
    1 Response Oct 25, 2013

    Splenectomy Worked!!

    I had a laproscopic splenectomy in July, 2012 because of autoimmune hemolytic anemia. Three weeks later my hemoglobin raised 2.5 points to 12.3! Low normal range! Now six months later it's up to 14.3! Success!!
    1 Response Jan 17, 2013

    AIHA with both Warm and Cold Antibodies - Success Story

    I have been fighting Autoimmune Hemolytic Anemia for over 9 years. Currently my team in Boulder CO does treatments as recommended by Dr. William Hogan Chief of Hematology at Mayo Clinic. I have tested positive for both the warm and the cold anti bodies. However, I believe I am...
    Imnotdoneyet Imnotdoneyet
    56-60
    4 Responses Jun 27, 2013

    This Is For My Son, Who Was Diagnosed With Warm Aiha At 6 Months

    My 6 month old was diagnosed at 6 months old in late August 2012. I took him to a sick child appointment because he was lethargic and pale, he had stopped nursing and I knew something was not right. The pediatrician ordered blood work, thankfully, otherwise I could have been sent...
    Forevans Forevans
    36-40
    1 Response Mar 14, 2013

    I was diagnosed March 2014 with hemolytic

    anemia. I have had two IVIG drips and four rounds of Rituxan along with three months of prednisone at 60 mg per day. This was a terrible experience with my joints, bloat, and it made me irritable. It has been six months and I am feeling better. Weaning off of the prednisone...
    janie59 janie59
    61-65, F
    1 Response Sep 20, 2014

    My Daughter Has Aiha.

    My daughter found out a few weeks ago she has AIHA. She is on steriods but, they decided that she needed a transfusion. She is getting a transfusion tomorrow. I have been reading everything I can about this blood disorder. My boss said don't worry its completely healable but...
    gg79072 gg79072
    51-55
    5 Responses May 16, 2011

    Positive & Hope

    I am 40 years old and one of the first ever recorded cases of AIHA. My AIHA was from the womb which is rare and due to this my immune system has never known 'normal'. I was taken all over the world to be seen by different doctors and had all the experimental tests done on me. I...
    AIHASurvivor AIHASurvivor
    36-40
    4 Responses Jun 12, 2012

    New To This...

    Hi everyone. I've been enlightened, and encouraged by many of the words written on this page. Thank you for that! I am a 35 year old mom of 3 boys with normally a very, very busy and plugged-in schedule. I am homeschooling my 1st, 3rd, and 4th grade sons (which I never thought I...
    Mykaray Mykaray
    31-35, F
    3 Responses Nov 24, 2012

    Blind-sided By Blood

    I was just diagnosed with AIHA two months ago. A new specialist suggested the haemolysis had been going on for a long time; thinking back, I was struggling with exercise intolerance over a year ago. Last December, I was wiped out physically, caught a flu which...
    VetWoman VetWoman
    36-40, F
    9 Responses May 12, 2010

    Youngest Hematology Patient At My Clinic.

    I was diagnosed with Autoimmune Hemolytic Anemia at age 16, when I had to be in the hospital for a month off and on. I had another attack last September, this time worse. They now know I have idiopathic Warm Antibody Autoimmune Hemolytic Anemia. I have been having large...
    melindaleegrace melindaleegrace
    26-30
    2 Responses Mar 30, 2013

    Still Looking

    last year about this time I was diagnosed with autoimmune hemolytic anemia. AIHC. My hemoglobin was very low, and iron supplement did not help. My dr. started me on huge doses of cortisone that brought up the count but had lots of nasty side effect. Eventually he tapered me off...
    tunket60 tunket60
    66-70
    Aug 23, 2008

    Autoimmune Hemalytic Anemia

    After sereral months of feeling so tired and going to my primary care doctor about 8 times over a 6 month period of time.  During this time I had headaches, abdominal pains, low grade fever, dizziness, lathargia, diarrhea, and was given either a Medrol Dose Pak or an...
    JanetV JanetV
    61-65
    Aug 17, 2009

    I Have Autoimmune Hemolytic Anemia [help Please]

    My name is Melissa...I am 19 years old going on 20 in Dec. I have had Autoimmune Hemoylytic Anemia since I was 16 years old. I first got it in Aug of 2006. When I first got it I was scared half to death. I stayed sick for a week straight I wouldnt eat, I couldnt do nothing. I...
    MelissaLynn MelissaLynn
    18-21, F
    7 Responses Apr 24, 2009

    Autoimmune Hemolytic Anemia Awareness (Share Your Story & Treatment)

    Hello, My name is Luciana and I have been battling AIHA. I designed a group for patients, family and friends to share information and bring awareness regarding autoimmune hemolytic anemia (AIHA). By members joining, awareness will spread about AIHA that could save someone's life...
    LSG023 LSG023
    36-40
    Aug 14, 2013

    Sac Longchamp Homme Concernant Les

    Le dernier rapport annuel de l'Onusidalien en anglaisrévèle, mardi 20novembre, des tendances optimistes concernant la propagation du VIH-Sida.Selon le document, le nombre de décès dus au sida dans le monde a en effet légèrement baissé en 2011, pour la cinquième année...
    tudoulaile03 tudoulaile03
    51-55, M
    Aug 11, 2013

    AIHA: a Confusing and Annoying Disorder

    HI, ACTUALLY I'VE HAD TOO MANY DIAGNOSES OVER THE LAST 10 YEARS SINCE I BEGAN WITH HEMOLYSIS PROBLEMS, SO I REALLY DON'T KNOW NOW IF I SUFFER FROM AIHA OR SLE. MY SPLEEN SAID GOODBYE ON 2001 AND SINCE THEN PLATELET COUNTS HAVE NOT BEEN A PROBLEM. IT HAS BEEN DIFFICULT TO COPE...
    yorman yorman
    36-40, M
    2 Responses Sep 25, 2009

    Mia

    On June 17,2013, I brought my Mia then 1 1/2 to the E.R. Because she had jaundice! Her urine was dark brown,she wasn't eating or drinking too much and her lips were so dry and cracked! I was convinced she was dehydrated,but confused on why she was yellow! I had them do labs on...
    AngieandMia AngieandMia
    36-40
    1 Response Jul 5, 2013

    Diagnosed With Aiha On 03/07/13

    Three weeks since diagnosed. Miserable. Already frustrated that the doctors only give lip-service to caring about my blood, and not me, the person, the patient, the person who has to live with a rare and serious blood problem. Actually, they don't even seem to care much about my...
    LeeWithAIHA LeeWithAIHA
    61-65, F
    9 Responses Mar 27, 2013

    Sont Transcrits Sac Longchamp Solde Pliage

    Des scientifiques de l'université dePittsburgh Pennsylvanie, Etats-Unisont mis au point une main artificielle contrôlée par la pensée. Elle est fiable à 90%.Une femme tétraplégique de 52ans réussit ainsi à saisir des objets, empiler des cônes, manger toute seule...
    tudoulaile03 tudoulaile03
    51-55, M
    Aug 9, 2013

    A Happy Ending... So Far

    I was diagnosed with Autoimmune Hemolytic Anemia (AIHA) in May 2001, at the age of 25. I had been feeling tired and unwell during the spring and even winter before being diagnosed. But, at the time I was a student and not sleeping properly, so I didn’t think too much of it...
    tEndr1l tEndr1l
    36-40, F
    4 Responses Feb 12, 2012

    My Daughter...

    My daughter (14 years old) was diagnosised with autoimmune hemolytic anemia over labor day weekend. She is on prednisone, down to 50 MG per day. She had a 4 day stay in the hospital, then we went to a specialist in MN. I have a blog that I had before this happend... If anyone...
    terrat762 terrat762
    31-35, F
    2 Responses Sep 11, 2008

    Autoimmune Hemolytic Amemia Brought On By Mono

    Alright. Well hi! My name is Anna, I am 16 years old, and I was diagnosed with Autoimmune Hemolytic Anemia and Cold Agglutinin on September 17, 2010. Before going to the hospital and being diagnosed, I was experiencing fevers (104), body aches all in the upper back and neck...
    aest1215 aest1215
    16-17
    2 Responses Nov 8, 2010

    I Have Started A Facebook Group Called Auto Immune Hemolytic Anemia

    Hey, my name is Kate and this is my second bout of auto immune hemolytic anemia, I am currently sitting in my hospital bed about to start rutuxamin or something along those lines. So I thought I'd set up a Facebook group so we can all chat, share and support each other through...
    Kateistaken Kateistaken
    26-30, F
    7 Responses Aug 1, 2013

    My Father And His Aiha

    Hello- I'm writing this as I am trying to do all I can for my father who is battling this and has been for 4 years now. He's 71, a war veteran, a proud father of three girls, and three girl grandchildren (lots of girls around :)) and I feel so helpless. He has been dealing on and...
    stephspero stephspero
    31-35
    2 Responses Dec 26, 2012

    The Blood Is The Life

    So one random day at work last August I felt a little tired and really winded walking up the hill to the parking lot at work.  When I got home my wife of 2 months (we were marred in June of 09) said I didn't look well.  The next day when I went to work everyone told me...
    JonDD1 JonDD1
    26-30, M
    3 Responses Jul 26, 2010

    Diagnosed with AIHA. My story similar to others

    here. Was in good health and very physically active. Started with 2 blood transfusions and 60 mg of Prednisone a day. I realize that side effects of Prednisone are horrible and different for everyone. My worst side effect is the extreme stomach bloating, distention and pressure...
    rongiffin rongiffin
    70+, M
    2 Responses Jan 2, 2014

    My Husband...

    Actually, it's my husband who is sick with AIHA. He got sick after a few months in Iraq...he turned yellow, was tired, couldn't breathe...all the symptoms. He was stationed (as a contractor) on a smaller base in Iraq. The Army wouldn't treat him; it seemed that what was wrong...
    wendywx wendywx
    36-40
    Nov 23, 2009

    am a 27 year old female.

    I've been struggling with AIHA since 2008 , it started when i had chicken pox , I stayed in hospital for one month and had blood transfusion and was put on steroids since that time and up till now I am incapable to stop them my blood is dependent on the steroids, I have tried...
    Hana87 Hana87
    26-30, F
    2 Responses Oct 26, 2014

    I Have Autoimmune Hemolytic Anemia

    I have been battling this for about 6 years now. It all started cause I thought I had the flu, needless to say far from it. I have had a bone marrow biopsy, multiple CT scans, prednisone, 8 rounds of Rituxan and 4 rounds of Cytoxan. And still not cured!!! I have also had 8...
    apinkerton apinkerton
    46-50, F
    1 Response Dec 2, 2013

    I Was Diagnosed With Aiha In January 2013

    I'm still baffled with the whole thing, my folic acid was really low, and my platelets were and are seriously affected. I was feeling thre symptoms for roughly a year, but my GPs had no idea what was going on, it was in January when my new GP suspected cardiac problems that I was...
    SallyCondon SallyCondon
    41-45, F
    2 Responses Jun 11, 2013

    My original Story and Update Sept. 3, 2009

    I am married, (though separated for years) from a family practice physician so I have had some help along the way as I have conducted research and educated myself about autoimmune illnesses. I am coming to the conclusion that people who are having immune disorders have immune...
    Spirit1song Spirit1song
    51-55, F
    5 Responses Sep 5, 2008
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