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Autoimmune Hemolytic Anemia

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#1 MelissaLynn



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Posted 13 November 2008 - 11:35 AM

So Ive had Autoimmune Hemolytic Anemia since the age of 16 and Im fixin to be 19 in 21 days and for the past 2 years everythings been rough for me in and out the Hospital off and on steriods that makes me gain & lose weight 2 bloodtransfusions and everything else.

Also the doctor told me theres a 50/50 chance I may or may not have kids and I really want kids of my own one day!

Well I started a new Hemo Doctor and today he told me I got 4 opitions to choose from to get me off the steriods forever! 1 of the opitions he was talking about that he really wants me to try is Ritubmax or something like that. && after doin research and everything on it && lookin at the side effects I GOT A FEAR OF TRYING IT!!! but he told me it will really help me to where Ill be off of everything for good and he's gave it to plenty of people & hasnt seen no reactions or side effects to it yet. He told me it works like gainbusters or whatever. && its something I might wanna try and I have until Dec 19th,2008 to decide rather or not if I wanna try it.

My little sister told me if she was in my condition she would try it that somethings you gotta over come your fear of everything and dont let fear stop you from trying something that might help you. So im not sure what I want to do All I kno is I want something that will help me so I won't have to keep going through what I wanna go through.

I hope everyday that my anemia will go away but it won't and I know it won't I know its there to stay forever but sometimes I ask myself why me why? I dont know what caused it and I wish I knew what did cause I would change everything if I could.

If anyone has what I have or has something similar to it thats heard of OR tried Ritubmax{or something like that} please let me know. he told me I will go once a week to get the iv in my arm and they start the meds out slowly so I won't have no reactions it will take 6 or 7 hours the 1st time then after that it will only take 2 or 3 hours! So if anyone could help me out and give me advice please & also if you have what I hav or something similar to it and has had children let me know the reactions to that please Im tired of goin through this I just want something that will HELP ME OUT PLEASE...


#2 janey


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Posted 13 November 2008 - 12:21 PM

I'd like to welcome you to the ISN forums. I am so sorry to read what you are going through at such a young age. It does sound like you have a doctor that it trying to help you. I couldn't find anything on Ritubmax, so I'm going to assume you mean rituximab. We do have a small section on it on our site. It discusses a couple of research trials where it has been used as well as some of the warnings associated with its use. Just click on this link:


I also found in PubMed the following review about its use in autoimmune diseases, one of which was AHA.

A review of the current use of rituximab in autoimmune diseases.

I hope this information helps. Please express your concerns with your doctor. You are also doing the right thing by trying to find personal experiences with this drug. I hope someone here can help you more.

Big Hugs to you Darlin'
Janey Willis
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#3 Amanda Thorpe

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Posted 13 November 2008 - 01:12 PM

Hello Melissa

I don't know anything about your condition or the suggested meds. What I do know is that you are in the right place to find support because even if some of us may not be familiar with your illness and treatment most of us are familiar with the benefits vs side effects debate for medication as well as concerns regarding our long term plans and whether they may be thwarted by our illness.

I am glad you've found us and hope we can provide the support you need. Thank you for sharing with us.

Amanda Thorpe
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#4 canon


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Posted 13 November 2008 - 05:32 PM


Welcome. Sorry to hear you are going through so much. You sound brave and that your sister loves and cares about you too. That is so nice.

Do not know much about the Rituximab but wish you well and luck with the decision you will make. Keep us updated.

With caring thoughts.

A happy heart is good medicine.