Autoimmune Hemolytic Anemia Member Introductions

#4

I live in the northeast and suffer from seasonal depression. I basically hibernate from november until april. Besides moving, I’d really like to talk to people about how they’ve conquered their depression. I’m a really cynical person and depression has got me beat :confused:

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#5

Hi. I was diagnosed with AIHA in 2002 – had a rather intense version of it and was in hospital for six weeks. Since then, so far so good, and it hasn’t returned. I’m here to share experiences with others.

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#6

I’m AMM, a 51 year old male from NY with autoimmune hemolytic anemia. I have been with this chronic illness for 10 years. I joined the egroup of AIHA to learn from other sufferers—share their anxieties and joys as patients and human beings. Each time someone comes along with questions I can answer, I try to help—using the fund of knowledge I know. From their posts, I learn a lot about living and surviving…

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#7

I was diagnosed with hemolytic anemia a year ago. I also have another immune disorder, immune thrombocytopenia, or ITP, where my body destroys my platelets, too.

I had my spleen taken out in 1995 for my ITP. Right now, my ITP is under control, but my hemolytic anemia isn’t. I take Prednisone in various dosages, but am in the process of weaning off of it.

I’d like to know what people do to treat their anemia besides Pred and splenectomy.

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#8

I have autoimmune hemolytic anemia; cold agglutinin form.

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#9

I have joined this group after receiving an e-mail informing me about this group from dhughes. My 14 year old son has been diagnosed with autoimmune hemolytic anemia.

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#10

I was diagnoised in 2003 with AIHA and have been following the group on Yahoo since 2004.

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#11

I was diagnosed with AIHA back in Dec 2006. It seems to be under control now with my hgb at 12.8 this week and no longer having to take the prednisone! :slight_smile:

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#12

Hello Ben,
Are the names and emails of participants of this forum sold or otherwise made available to outside partys? Since I joined I have started getting emails from someone purporting to be a help group but turning out to be a major pharma company.
Thanks for the reply,
ojos

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#13

I am anemic and need more information.

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#14

I have been diagnosed with warm auto antibodies which can cause hemoltyic anemia I am 2 1/2 months pregnant . What is this and what can it do to me?

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#15

Hi! My name is Wendy. My husband and I live in Alaska. My husband has AIHA, and my dog was just diagnosed with AIHA too. (The vet was really freaked out by this). My husband, Jim, completed Rituxan in February 2006, and was fine for a little more than a year, but hemolysis has crept up on us again, and he is starting another round. We are just about to adopt our daughter, Libby Marie, in the lower 48 in about a month. With the start of Rituxan, Jim may have to miss out on her birth. Well, that is our story…thanks for all the support!

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#16

How do I save my dogs life?!?!?!?!?!?!? My family’s 11 yr old dog has just been diagnosed. My name is Danielle please help.

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#17

My duaghter almost died a year ago from AIHA, she has other problems related to the disease. She is 34 yrs old and the mother of two children, I just wanted to see how others are handling their disease.

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#18

Good evening, everyone.
I’m too am currently weaning off the ugly, white pill - I’m down to 10 mg as of today. Not fast enough (I tried to get him to 7.5 but he was not in a discussing mood today).

This is my second bout with AHA. My first one began about 20 years ago. I had quite a lengthy remission until about 4 years ago, when I began to feel ill. It all sort of crashed this past December, and I left work in January.
I had my spleen removed 4/5/07 in hopes of getting my counts up to speed but so far, it’s not working.

When your spleen is removed your platelets go sky high, as many of you know and mine are still quite high (645K). I’m on a drug called Anagrelide to keep lowering the platelet count. Problem is I’m having the “Rare” cardiac symptoms people sometimes get with this drug. So between the prednisone and this new drug’s side effects, I am getting a bit discouraged.

It’s great to find a place to talk to others about this disease. Hemolytic Anemia doesn’t sit well with some of the people around me - there’s no visible scar or missing limb, I guess. But I’ve learned a lot going through this process, about myself and those I have around me…and a bit about the disease and different drugs.

I am hear to share with or listen to anyone who needs to chat.

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#19

I was recently diagnosed with AIHA and I’m looking for others who are living with this condition.

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#20

I have hemolytic anemia, was on prednisone which did’nt help and have had 4 treatments of Rituxan. After 4 weeks my hemogloblin increased to 12.3 however after a CBC yesterday it had dropped to 11.7. My big problem is that Rituxan is not FDA approved for my condition and the doctor told me he might want to go through another 4 weeks of the same treatment. At $4,000 a treatment I find it difficult to come up with another $16000.

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#21

My 8 year old mini schnauzer has just been diagnosed last week with AIHA. She is very sick and I would appreciate any advice from anyone to help me get her better.

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#22

hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.

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pinned #23
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