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    Old 03-09-2004, 05:41 PM   #1
    Plump Smurf
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    Exclamation AIHA too fast- Help!

    So glad to have found this site- it's so rare to find people struggling with this...

    My sister-in-law is in the process of having her type of AIHA confirmed, but she's losing ground fast. She was admitted to the hospital 3 weeks ago with a hemoglobin of 3 (or less?)- they advised immediate transfusion, but we insisted on starting with the least invasive treatment first (steroids). She went home and her level has risen to 4 or 5, but it's not happening fast enough. The Dr. is already talking about a spleenectomy in a week. The spleenectomy is scary because of the myriad of other health complications (ulcers, heart condition) she has. To top it off- they have yet to get all the tests in on what type it is- cold or warm antibody... We are all pretty scared- not to mention my sister-in-law. In reading the course of the disease that others have shared on the board, I haven't found anyone whose levels dropped so low and it seems like people have been given the time to "consider" a spleenectomy... This is all happening so fast... Has anyone else has experienced AIHA progressing at such a rapid rate or not responding?

    Also- we are trying to make physical and financial plans for dealing with this long-term. We are taking care of her right now (she is too weak to care for herself) and I wondered if anyone had any experience related to being too weak for daily tasks? What hemoglobin level is associated with being able to walk across a room? Financially, insurance doesn't cover a lot of the perscriptions... How have you all been covering the medical expenses?

    Most importantly- is there anything we can do to help her be more comfortable? The Dr.'s say the case is so serious that natural/homeopathic efforts are a waste, but we are still trying everything possible at home. Any suggestions on how to help with the pain or swelling?

    Thanks so much for any feedback...

     
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    Old 03-10-2004, 04:28 PM   #2
    Ouise
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    Re: AIHA too fast- Help!

    Quote:
    Originally Posted by Plump Smurf
    So glad to have found this site- it's so rare to find people struggling with this...

    My sister-in-law is in the process of having her type of AIHA confirmed, but she's losing ground fast. She was admitted to the hospital 3 weeks ago with a hemoglobin of 3 (or less?)- they advised immediate transfusion, but we insisted on starting with the least invasive treatment first (steroids). She went home and her level has risen to 4 or 5, but it's not happening fast enough. The Dr. is already talking about a spleenectomy in a week. The spleenectomy is scary because of the myriad of other health complications (ulcers, heart condition) she has. To top it off- they have yet to get all the tests in on what type it is- cold or warm antibody... We are all pretty scared- not to mention my sister-in-law. In reading the course of the disease that others have shared on the board, I haven't found anyone whose levels dropped so low and it seems like people have been given the time to "consider" a spleenectomy... This is all happening so fast... Has anyone else has experienced AIHA progressing at such a rapid rate or not responding?

    Also- we are trying to make physical and financial plans for dealing with this long-term. We are taking care of her right now (she is too weak to care for herself) and I wondered if anyone had any experience related to being too weak for daily tasks? What hemoglobin level is associated with being able to walk across a room? Financially, insurance doesn't cover a lot of the perscriptions... How have you all been covering the medical expenses?

    Most importantly- is there anything we can do to help her be more comfortable? The Dr.'s say the case is so serious that natural/homeopathic efforts are a waste, but we are still trying everything possible at home. Any suggestions on how to help with the pain or swelling?

    Thanks so much for any feedback...
    So sorry to hear about your sister-in-law. My experience is limited (diagnosed in August 2003, so I have only a few months). I would keep her warm at all times (just in case it's cold agglutinin, whatever, which they thought I had at first). I was down to 4 but still functioning, but I don't know how. I could walk about twenty feet and then I needed assistance. I tried to eat "heartier" meals than I usually do (I added red meat, even though my problem wasn't iron related). I slept a lot. I drank a lot of coffee (I'm so thankful no one told me to stop drinking it!). I also suffer from migraines. The AIHA gave me the worst headaches I've had (not like migraines but all over the head), and the only time I felt even close to normal was when I was taking what I usually take for migraines, which is a butabital compound with caffeine and aspirin (I think it's aspirin). I haven't had a spleenectomy, nor is it being considered right now (I had steroids for months but have recently been weaned off them). What may have brought me back to good functional levels are the Rituxan treatments I had. I started these about the second month. I don't know how long it takes for Rituxan to work, however. It didn't seem to have many side effects (or the steroids masked them). As for the finances, I am still waiting for the shoe to drop (or both shoes, for that matter). We have insurance, but it keeps sending me letters that it is "reviewing my files." Along those lines (worrisome things), I would keep your sister-in-law away from stress as much as possible. Ask a librarian for good music tapes you can check out, for example.

    Hope some of this helps. Your sister-in-law will be in my thoughts and prayers.

    Ouise

     
    Old 03-11-2004, 09:02 AM   #3
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    Re: AIHA too fast- Help!

    Thank you, thank you, thank you for your post. Everyone seems to be comfortable talking about the good days and their recovery, but few talk about the bad days... I have been reading about Rutuxin (?) because it seems like the more difficult cases are treated with this... What is it? How does it work? If there's a possibility of taking that before taking out the spleen, I'd like to be informed. Her other health complications will make taking out her spleen a more-than-normal life-threatening operation. But I've also read that doing the Rutuxin can cause massive complications... Again, thanks so much for the support and suggestions... Good to see that you are physically able to post!!!

     
    Old 03-11-2004, 04:14 PM   #4
    fotolady001
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    Re: AIHA too fast- Help!

    Quote:
    Originally Posted by Plump Smurf
    Thank you, thank you, thank you for your post. Everyone seems to be comfortable talking about the good days and their recovery, but few talk about the bad days... I have been reading about Rutuxin (?) because it seems like the more difficult cases are treated with this... What is it? How does it work? If there's a possibility of taking that before taking out the spleen, I'd like to be informed. Her other health complications will make taking out her spleen a more-than-normal life-threatening operation. But I've also read that doing the Rutuxin can cause massive complications... Again, thanks so much for the support and suggestions... Good to see that you are physically able to post!!!
    Hi,
    I have the cold form of the autoimmune hemolytic anemia. I went through 4 sessions of the Rituxan. The only thing that they worry about is whether you will have an allergic reaction to it. So they gave me Tylenol and Benyadryl before each treatment. It was the easiest treatment that I have had so far...and I think that it has made things better...

     
    Old 03-23-2004, 03:09 AM   #5
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    Re: AIHA too fast- Help!

    I have had Auto Immune Haemolytic Anaemia since 1997. The first time I was admitted my count was 3 and they treated me with Blood Transfusions, Haemoglobuglobin and Prednisone. Came home they weaned me off the steroids and 2 wks later was back in hospital. This time they took out my spleen (this is meant to fix 2 in 3 people) I was that unlucky 3rd person. They gave me some more blood and put me back on prednisone, weaned me off and I was back in hospital within two weeks. The last time I was in they put me back on steroids (prednisone) and a different drug called imuran, came home and they weaned me off both very very slowly. I have been healthy except for a few infections (prolly due to having no spleen) for the past six years.

    My red blood cell count is now dropping again. Are their any new developments on the AIHA front? Anybody in the same boat? I don't want it to come back, I am 22 and just started my second year of highschool teaching.

     
    Old 03-25-2004, 05:11 AM   #6
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    Re: AIHA too fast- Help!

    Quote:
    Originally Posted by jbee6
    I have had Auto Immune Haemolytic Anaemia since 1997. The first time I was admitted my count was 3 and they treated me with Blood Transfusions, Haemoglobuglobin and Prednisone. Came home they weaned me off the steroids and 2 wks later was back in hospital. This time they took out my spleen (this is meant to fix 2 in 3 people) I was that unlucky 3rd person. They gave me some more blood and put me back on prednisone, weaned me off and I was back in hospital within two weeks. The last time I was in they put me back on steroids (prednisone) and a different drug called imuran, came home and they weaned me off both very very slowly. I have been healthy except for a few infections (prolly due to having no spleen) for the past six years.

    My red blood cell count is now dropping again. Are their any new developments on the AIHA front? Anybody in the same boat? I don't want it to come back, I am 22 and just started my second year of highschool teaching.

    I don't know of any... I think everyone is still in the same place as they were 6 years ago... I have heard of Rituxin, but I am still unclear about the drug(?)
    It seems to be used only in rare cases and only with certain types of AIHA... I wish you the best of luck- it seems that you are a true survivor and I'm sure you will beat it this go around too!!

     
    Old 03-25-2004, 05:50 PM   #7
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    Unhappy Re: AIHA too fast- Help!

    Thankyou plumpt smurf for your reply....I have to take some time off school and travel down to Brisbane for treatment on Monday....he wants me to stay for monitoring for at least a week...It's still dropping...I will ask about Rituxan...I hate the steroids getting me chubby cheeks already..

     
    Old 03-26-2004, 05:57 AM   #8
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    Re: AIHA too fast- Help!

    Quote:
    Originally Posted by jbee6
    Thankyou plumpt smurf for your reply....I have to take some time off school and travel down to Brisbane for treatment on Monday....he wants me to stay for monitoring for at least a week...It's still dropping...I will ask about Rituxan...I hate the steroids getting me chubby cheeks already..
    Chubby cheeks are attractive in some countries and chipmunks find them irresistible... Personally, after looking at them so long I think non-swollen people look at little anorexic... I wish you the best of luck- take it easy- you did it once, you'll do it again.

     
    Old 03-26-2004, 06:49 AM   #9
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    Re: AIHA too fast- Help!

    I hope your sister in law is doing better....I was glowing yellow when I was that low...It was scary and I sorta feel like I know exactly what's she's going through...When they took out my spleen they did open cut surgery just in case their was two (one big one and one little one) and their was...It's meant to fix 2 in 3 so I would recommend the splenectomy even though it din't work for me...She could be the lucky one...hope she's feeling better...my thoughts are with you.

     
    Old 05-05-2004, 11:40 AM   #10
    purplefinch
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    Re: AIHA too fast- Help!

    Wish no one had to suffer from this disease. Hoping you've all found ways to feel better.

    Last edited by purplefinch; 06-16-2004 at 01:19 PM.

     
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