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  • Coombs positive AIHA--Advise, please.

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    Old 07-17-2008, 07:36 AM   #1
    tooyoungtobeill
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    Arrow Coombs positive AIHA--Advise, please.



    Hi everyone.

    A little history:

    Otherwise healthy 21 year old
    Was diagnosed in Feb. with AIHA, coombs pos., hgb 8, hct 19, rbc way too low, liver functions through the roof with billirubin in the urine, etc.
    Prednisone (began at 100mg and tapered down) until June

    Prednisone brought my blood back to normal rather well but with terrible side effects. Now, about a month off the pred. my hgb teeters between 10.5 and 11.5, and my hct between 30 and 33 (I get my blood checked weekly).

    I take folic acid and have begun b12 shots and iron infusions due to low iron from hemolysis. I read that these can make your blood look like you're not hemolizying when you really are---has anyone else heard that?

    Remain coombs positive almost 6 months later.

    Thankfully my CT scans and bone marrows have come back with negative results and all other tests appear normal for now.

    My hema. would like to start me on Rituxan infusions.
    I am hesitating though because my numbers are holding on their own (see above) and Rituxan is a serious, serious drug. My hema. says that because I am still Coombs positive that this is a chronic problem and I am likely to relapse with another hemolytic crisis soon. He believes that Rituxan now, will hopefully put the next crisis off for a while.

    Has anyone had Rituxan while in a "remission"?

    Any experiences or advice would be greatly appreciated. Thank you.

     
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    Old 07-20-2008, 12:07 PM   #2
    japlopper
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    Re: Coombs positive AIHA--Advise, please.

    I also have AIHA. When I was dxed, my hemoglobin was 8 as well. The only treatment my hema has done so far is the Pred.

    I know many people who have done Rituxan, but I will say this, if Pred works, and you're holding, I wouldn't do the Rituxan. There's no need to overtreat. Your immune system is already wacky. If it's calmed down now from the Pred, I'd leave well enough alone.

    AIHA is a chronic condition. Once you have it, you always have it, but you could be in remission for years. I've been in remission for over a year. I had a rough 6 months on Pred. Tapering off the drug was a nightmare, but I have to say it was an inexpensive treatment, and it worked. I was only on 40mg then tapered down, so I wasn't on a high of a dosage. Next time they might try starting you on a lower dose. It will be trial and error, simply because the drs don't know that much about this disease.

    The good news is that the drs know about your B12 and folic acid. Many hemas don't check the B12 which can mean the person can't get well, because when you're hemolyzing, your red cells are basically exploding - that's what my hema says and your body isn't getting the B12.

    It's a mangeable condition, but you will have to find a treatment that works for you. I agree though, I wouldn't do Rituxan until you have another bout.

    Hang in there - getting well takes a lot longer than you think it will. Don't push yourself. You will get better and get a handle on things!

     
    Old 07-21-2008, 05:52 PM   #3
    tooyoungtobeill
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    Re: Coombs positive AIHA--Advise, please.

    Thanks so much for the reply.

    Are you always coombs positive or do you go negative in remissions? How often do you have episodes--how many have you had?

    My hgb/hct was 13.5/39% today!!!!! after two rounds of IV iron. But I'm still coombs positive, have a slightly elevated LDH and billirubin. How is that possible? I'm sure it will go down once the iron wears off but I'm afraid the hema. will think I'm in remission and not check me again and I'll relapse. Ugh. I think I've suffered emotional trauma form this, lol.

     
    Old 07-21-2008, 07:42 PM   #4
    Mel52
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    Re: Coombs positive AIHA--Advise, please.

    My husband is in remission because he had his spleen removed but he is still combs positive and I think he will always be

     
    Old 07-25-2008, 09:43 PM   #5
    Angelndisgse
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    Re: Coombs positive AIHA--Advise, please.

    Quote:
    Originally Posted by tooyoungtobeill View Post
    Hi everyone.

    A little history:

    Otherwise healthy 21 year old
    Was diagnosed in Feb. with AIHA, coombs pos., hgb 8, hct 19, rbc way too low, liver functions through the roof with billirubin in the urine, etc.
    Prednisone (began at 100mg and tapered down) until June

    Prednisone brought my blood back to normal rather well but with terrible side effects. Now, about a month off the pred. my hgb teeters between 10.5 and 11.5, and my hct between 30 and 33 (I get my blood checked weekly).

    I take folic acid and have begun b12 shots and iron infusions due to low iron from hemolysis. I read that these can make your blood look like you're not hemolizying when you really are---has anyone else heard that?

    Remain coombs positive almost 6 months later.

    Thankfully my CT scans and bone marrows have come back with negative results and all other tests appear normal for now.

    My hema. would like to start me on Rituxan infusions.
    I am hesitating though because my numbers are holding on their own (see above) and Rituxan is a serious, serious drug. My hema. says that because I am still Coombs positive that this is a chronic problem and I am likely to relapse with another hemolytic crisis soon. He believes that Rituxan now, will hopefully put the next crisis off for a while.

    Has anyone had Rituxan while in a "remission"?

    Any experiences or advice would be greatly appreciated. Thank you.
    I know alot of you have had different treatments for AIHA. BUT IF YOU HAVEN'T had a Rituxan treatment please stop scaring people away from it. I have had this disease for 10 years. I know alot of you have read my story before but some new people haven't. I was first on Prenisone for over 2 years. Gave me the osteoporosis at 23. The Dr that was treating me said she only heard of it in dogs. Even last year when I came out of remission and took my dog to the vet when I was better she said she had never heard of it in a human. I had my spleen removed. It didn't help I now have to get a flu shot every year and a pneumovax shot every five years. Then I went to THE MOST BRILLIANT HEMO in the country and he gave me Rituxan. The reason I know he is the best in the country is because he was the first Dr. that started using Rituxan. I was the 9th person in the country. I had a four year old son at the time and was willing to be a trial patient just to get off steriods. It put me in remission for three years. Went through four more treatments and was in remission until last year. Again went through Rituxan treatments and I am proud to say I am in remission once again. The only thing that I take for my AIHA that I have to take for life is Folic Acid. No B-12 injections, no iron treatments. And no if your in remission you will not have a positive coombs test. Direct or indirect coombs. That is how they tell your hemolysing. And they tell by your retic count. Last year me and my hemo had a huge falling out. He switched hospitals and I followed him to this other hospital because of the fact that this man has saved my life 3 times. He has no bed side manner and he tells people how it is. But when it comes to his patients if things aren't in order and where he can find them he blows a gasket because he is that concerned about his patients. Last year my insurance company didn't want to pay for my treatments because it wasn't FDA approved yet. And he fought my insurance company and showed them article after article how it worked for this disease. If you don't feel comfortable with your hemo. YOU ARE THE PATIENT YOU HAVE THE RIGHT TO A SECOND, THIRD, AND FOURTH opinion. Until your satisfied. It is your life and your health take it into your hands or you will be the one lost. I always investigate my dr.'s before I go to a new one.

    Last edited by Angelndisgse; 07-25-2008 at 09:46 PM.

     
    Old 07-28-2008, 10:21 AM   #6
    tooyoungtobeill
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    Re: Coombs positive AIHA--Advise, please.

    This week I'm holding at 13.5 hgb after two iron infeds. The hema. said the iron helped to get my bone marrow working well enough to continue the recovery. Liver functions are now normal and my hct is up to 40%. BUT, still coombs positive.

    The hema. said I didn't have to come back for a month!!
    I've had a blood draw every week since I was dx'ed in Feb. so I have a ton of apprehension about that. I'm going to have an anxiety attack every time I get tired this month. He said to call and just come in for a CBC if I needed to.

    ugh. what a rollercoaster!

     
    Old 07-28-2008, 05:36 PM   #7
    tooyoungtobeill
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    Re: Coombs positive AIHA--Advise, please.

    Also, my hema. is telling me this may or may not come back. He said it *probably* will as I probably have the adult, chronic version of it but since I'm 21, maybe not. But to be prepared for it to come back.

    When I get sick with the flu (which is what I thought I had when I first was dx'ed), will it bring it out again? When does it usually flare up?

     
    Old 07-29-2008, 02:45 PM   #8
    joglynne
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    Re: Coombs positive AIHA--Advise, please.

    Hi tooyoungtobeill. I was on Prednisolone for 18 months and have been one of the lucky ones as I have been off it for 3 years. I have graduated to 6 monthly blood tests and am still showing as Coombs positive.

    When I was first diagnosed I'd had a sore throat which dragged on for weeks and I was suffering from all those symptoms we all know so well, so when I developed a sore throat a couple of months after after the Pred was stopped I really started to panic. Since then I have come through a couple more of bouts of coughs and colds without my AIHA flaring up.

    I don't think anyone can say what would cause a flare up or how long the AIHA can stay dormant, all my Consultant says is that he will fight the condition with me 'if' it does return.
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