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    Old 01-29-2004, 03:54 AM   #1
    sicco
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    i got AIHA, now what?

    Hey every1, i just stumbled across this site and was amazed that there are people with my condition on this board. Im from Sydney,Australia and i've had autoimmune hemolytic anemia for 2 years now.
    Its supposed to be quite uncommon, approx 1 in 100,000 ppl have it which is probably why there isnt much research or safe treatment options available for it. I was told to do a splenectomy after 1 yr of prednisone and immunosuppresants but have been playing around with the idea in the hope that it will just go away... Maybe not.

    A new drug,Rituximab (RITUXAN), which is widely used in the states is available in Australia but isn't approved for used for AIHA. This means no private or public funding.
    I am wondering if anyone who has been treated with this has found it to be useful and worthwhile and if its worth me paying $13,000 AU for it. Its either this or splenectomy, and either one needs to be done asap. Im only 21 so i'd still rather keep my spleen (who wouldn't), but i guess a spleen isn't a vital organ anyway. I didnt even know what it was until i got this condition.

    Anyways, any help on this would be appreciated and i hope to share my experiences, good and bad, with the rest of you.

    Cheers esan.

     
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    Old 01-30-2004, 05:32 PM   #2
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    Re: i got AIHA, now what?

    Hey I have autoimmune hemolytic anemia too since August 03, and when they told me I didn't even know what the heck it was !!! My blood ct. was down to 4.0 and had to spent a week in the hospital to get my counts up, and now I am still trying to deal with this anemia. I go to the hemo once a week and recently I have been getting hemogoblin drip to try & raise my blood levels which are only up to 8.7. They have me taking 50 mg of predisone, iron, folic acid and they even tried that new drug Procrite @ $1,200 a shot buy it did nothing?

    I am suppose to have my spleen removed on 2/18 I have been trying to hold on to it but now after I think it's time. I have been on Predisone which I consider POISON!!!! lol The other day the blood bank from the hospital called and told me they have not found my type blood with all the antibodies I need in it (they have been looking since 8/03) So now I see the hemo on Monday and I think the surgery will not happen at this time until they can find my blood type in case I need a transfusion at the time of the surgery.

    Well I guess I have got on enough for now, Good Luck to ya & keep me posted Marilyn

     
    Old 02-01-2004, 06:49 AM   #3
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    Re: i got AIHA, now what?

    DAmn right Marilyn, prednisone IS poison and i reckon it actually makes me worse in the long term. I wonder why its taking so long to find blood for you. I guess you either must have an uncommon blood type or the doctors are just being extra cautious, because i've never had problems with matching blood for transfusions even though the antibodies don't usually match completely.

    The really agitating part about this condition is that its not know what causes it. I dont really know if i was my fault for eating too much chocolates or what, but im certainly being more cautious and selective with my diet and lifestyle nowadays. Also, dont call me paranoid but i sometimes feel it might have something to do with the huge power lines running close by our house. It would be really good if we, the patients, could possibly find a reason for it by discussing between ourselves about our habits and lifestyles. or maybe im just too optimistic.

    My blood count has been averaging 7-8 g/l for the last yr now but i have found something thats really helped me cope with anemia much betta. i was recommended by a nurse at the hospital to do some Chinese therapy that includes acupuncture and traditional herbs. I was sceptical at first but i thought what the heck, i got nothin to lose (except my spleen ) and i guess when i kept ending up at the hospital i felt so down that i was willin to try anything. Anyways, the stuff seems to work especially the herbs, and after 1 month i noticed a big difference. Everytime i went to the hemo i was surprised at the fact that for example, i would feel like my counts were about 9 but i was actually 7. it was no cure for me but safe and definitly worth it. I'm running at about 8 now and i can even play tennis now which i hadnt been able to for over a year. Before, i would struggle to go upstairs to my room. if you do decide to try it make sure you find a genuine therapist with good qualifications and not just anyone thats convenient for you.

    Either way, marilyn i hope you can keep your spleen for that extra bit longer. I know the feeling when a splenectomy gets delayed, a quiet sigh of relief.

    I got so much to talk about but for now i think i'll go to sleep. good nite.

     
    Old 02-01-2004, 07:22 PM   #4
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    Re: Sicco

    Hey Sicco Please lets hope now we have to give up chocolates b/c thats one thing I am not doing!!! LOL

    I agree I don't understand what the problem is with finding blood with the antibodies they need I see the hemo tomorrow & I will find out more, not too happy with this guy, he is my second opinion doctor but after tomorrow if he just looks at me wrong thats it!!! (predisone kicking in) LOL

    Sounds like you are having some luck with Chinese therapy along with the
    acupuncture, about 5 months ago my sister-in-law suggested this to me,she wanted to go into the City (Chinatown) but I was just told I had hemolytic anemia and I just didn't give it any thought?

    Well I think I had enough for tonight my brain is not working to well tonight (not that it has been for the last 6 months) with this anemia sometimes I amaze myself that when I venture away from home I can remember my way back Thanks for replying to my post its nice to talk to peeps that know what u are going through. Marilyn

     
    Old 02-17-2004, 06:12 PM   #5
    sicco
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    Re: i got AIHA, now what?

    Hey Marilyn, hows the blood keeping up? I've been really busy lately, sorry i havent been able to reply. oh and chocolates are ok only when you crave for them

    I was reading another post and I see you are going ahead with the splenectomy. I really hope it fixes you up for good. Its a shame they cant put the spleen back in if it doesnt work, cause then everyone would be doin it with no worries, even healthy ppl!lol

    Meanwhile, i've already started the rituximab treatment, going for my third dose on friday but so far i cant feel a major difference in me. my bloods at about 9 right now so im feeling ok. I hope this stuff works at least for the time being cause im on a lot of immunosuppresants and they're quite toxic.

    Im glad im not the only one with memory problems. I thought i was just ageing really fast! Its a really annoying problem for me like i cant remember things that happened a few days ago and my concentration is poor as well. I just feel like im getting dumb and dumber, but hopefully not as dumb as in that movie

    Anyways, keep us posted on how the surgery goes and best of luck.

     
    Old 02-19-2004, 08:44 AM   #6
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    Re: i got AIHA, now what?

    Hi...I posted a note earlier saying that I have cold agglutinin hemolytic anemia. I went and did a quick search of AIHA and it said that there were usually two forms of AIHA, cold antibody and warm. I have the cold form. I loose RBC when I get cold. How are you loosing your red blood cells? I just finished my 4th round of Rituxan. I am having another blood test done on Monday and also a titer to see if the Rituxan has worked. My HGB stayed between 7 and 8 for most of the year until.....I quit my birthcontrol pills....within 2 weeks, I jumped to 10, and I have been climbing since. My last one was 11.3......My disease has so many names, I'm confused.

     
    Old 02-20-2004, 10:47 AM   #7
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    Re: i got AIHA, now what?

    At last!! I've looked on this website many times over the last couple of years and found nothing about and nobody with AIHA. HELLO from London to all my fellow dodgy blood people!!

    OK - hope this is useful. I'm female - 32 years old. Got married 2 years ago and came back from honeymoon sick. Diagnosed with AIHA exactly 2 years ago and went on Prednisone which helped but didn't stabilise me - so doses were up and down and so was Hb. Also took some immunosuppressant called Mycophenolate - no response really. After a year of also desperately trying to avoid splenecomy, I gave in and had it removed Feb last year. It was double the normal size and I have a 15cm scar. Unfortunately complications afterwards - ie blood clot in portal vein and then one in my leg. This is a very rare complication so don't get worried about it. Blood was all over the place and continued to take Pred at varying doses to keep the levels as up as poss. Did it work?? No! But I think it helped slow the haemolysis down. And I was so desperate to get better, that I don't regret having it done. Since then, was still very unstable & continued on Pred and had blood transfusions after particularly bad hemolysis every 5-6 weeks. In September last year, I took a course of Rituximab. It takes a couple of months after treatment to know whether this has worked. With me, it didn't really make any difference and I was extremely disappointed. OR DID IT??? I haven't had a blood transfusion since Nov 14th. I have stayed on a constant and unchanging dose of steroids of 15mg per day and my blood seems to be holding. It was 11 last week! I am swimming twice a week and I'm feeling pretty good. Ideally would love to come off steroids as we all know they are terribly bad for you long term. But they keep me upright! In the last week have reduced my steroids to 10mg and seem to be feeling OK. So I think (fingers crossed) that I'm getting slightly better. When I look at my blood results and Pred dose this time last year and how many days I couldn't even get out of bed...I'm like a different person now.

    I'm a great fan of accupuncture - so definitely recommend. But only go to a really experienced and legit practitioner. Preferably Chinese doctor.

    With my AIHA, I get a very high fever and have done since the beginning. However, since feeling a bit better - less aggressive and less frequent now. Do any of you get fevers as a symptom? None of the doctors I have seen (and I've seen many - here and in the States) can understand why I get a fever. Of course they thought I might have Lymphoma, Lukemia etc - been tested with bone marrow biopsies etc and everything is negative (thank God) but I'd be interested to know what your symptoms are. Please tell me. Does anyone else have 'attacks' of hemolysis when you feel so ghastly and your urine is the colour of red wine and your blood drops very quickly???? This has happened only a few times to me.

    There are other drugs I have been told I could take - Azothioprine, Cycophosphlamide. I have avoided these as they interfere with fertility and right now, I would like to start a family. But that's a whole other story and very complicated with AIHA and an elevated platelet count which happens after splenectomy.

    So that's my story. I would so like to hear from any/all of you. Please feel free to ask me any questions too.

    Agree that we should see if there are any common denominators between us to explain why we all got this? Any drugs that you guys have taken for conditions in the past?

    Lots of love Babyfish xx

     
    Old 02-20-2004, 10:53 AM   #8
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    Re: i got AIHA, now what?

    Very interesting about your birth control pill. What was the name of it? Maybe this is the cause? I think I have warm AIHA but I'm afraid I don't really understand the difference between the two. Did you come of the Pill at the same time as you've been taking Rituxan (Rituximab in UK)?
    Babyfish x

     
    Old 02-20-2004, 11:38 AM   #9
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    Re: i got AIHA, now what?

    Quote:
    Originally Posted by babyfish
    Very interesting about your birth control pill. What was the name of it? Maybe this is the cause? I think I have warm AIHA but I'm afraid I don't really understand the difference between the two. Did you come of the Pill at the same time as you've been taking Rituxan (Rituximab in UK)?
    Babyfish x
    I went off the birth control pill (ortho tri-cycline) 3 weeks before starting the rituxan. In the following 2 week after stopping it, I went from 8.2 HGB to 10.5 HGB. But, I was having some extreme hot flashes from taking cytoxan in the past that I took an over the counter (Estoven) menopause medicine and within a week I went back down to 9.8. So we started the Rituxan and right now I am at 11.3 which is the highest I have been since I was told that I have the disease. The funny thing is that since the Rituxan was started the extreme night sweats have gone away.....don't know what to make of it...It's just nice to have energy and to see that the yellow has gone away from my eyes and skin. I am having another cold agglutinin titer done on Monday to see if it has gone down.

     
    Old 02-20-2004, 05:31 PM   #10
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    Re: i got AIHA, now what?

    Hello, all--

    Nice to meet you all--sorry we have such an odd thing in common. I was diagnosed with AIHA July/August 2003. They thought it was West Nile disease (common around here then), so I had a long time of being sick before I was diagnosed. My doctor (a great doctor) had never seen a case of AIHA. I'm female, 46.

    Prednisone helped initially, although it made me nuts (no sleep, no concentration--need I go on?). Then I had four doses of Rituximab in October, and since then, over the past few months, I've been able to cut down the Prednisone. Two weeks ago I went off of it. That was rough in its own way. My blood counts are good and holding, though. I'm scheduled for a CT scan next month; my father died of lymphoma, and I think they want to keep an eye on me. Does anyone know of a connection between the two?

    I so enjoy reading your posts; when I first started trying to find out about this disease, all I could find was on dogs (I know you all have encountered this). An e-mail friend of mine said, "No offense, but my dog had this." My sister asked if it was genetic--a good question. I don't know why it started, and I don't have the cold type.

    That's all for now!

     
    Old 02-24-2004, 06:56 AM   #11
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    Re: i got AIHA, now what?

    Hi everyone... i'd like to first say .. WOW. I cant believe there was such a good response from all the dogdy blood people It really helps ease the pain, physical and emotional, that we all go through by talkin about it.

    In response to fotolady, i lose my red blood cells 24/7 so i guess i have the warm type.
    I must say i agree with babyfish in that the birth control pills might be the cause. Are you sure you dont have the drug-induced hemolytic anemia. Your hemo should have done some tests such as Heinz stain to determine this. It can take months to recover from DIHA. In fact thats what i thought i had at first because i was on mesalazine for my crohn's. But to my disappointment this was not the case. From the research i have read, i know that rituximab works better on cold agglutinin than on the warm type so thats a bit of good news for you and not so good for the rest of us . I've however been doing pretty well so far. I'm having my 4th dose of rituximab on friday and my counts are still increasing, 10.3, which comes as quite a shock cause i havent been this high for quite some time.

    babyfish, I cant say i get any fevers however i do get hot flushes and night sweats. I think thats related in part to higher doses of prednisone and severe hemolysis.

    I have to say that theres a chance this condition is somewhat hereditary but not directly. It is an immune disorder so one of your parents might have had a different immune disorder and your grandparent, a different one as well. This is the case for me, whereby my mum has thyroiditis and my grandma has rheumatoid arthritis and i ended up having the double whammy! Crohn's and AIHA. All immune stuffups.
    All it probably takes is a trigger to set the disease off, whatever that may be.
    Does anyone else have a history of family problems? (who doesn't )

    Ouise, I doubt however that lymphoma can be caused by AIHA, i believe it can only happen vice versa, ie lymphoma can cause AIHA. Im not sure that lymphoma is an immune disorder but let us know anyway.
    Its so true that dogs get more attention than we do for AIHA. At first i thought i may have contracted it from MY dog and was about to give her away but i realised its not contagious even if she had it. I wonder how dogs could cope with all that prednisone?!?

    Anyways, i hope everyone continues to improve and live happy lives.

    "Suffering shared is suffering lessend"

     
    Old 02-24-2004, 10:19 AM   #12
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    Re: i got AIHA, now what?

    Sicco
    Thanks for the response. As it happens, there are auto-immune diseases in my family. My mum had Hashimotos disease (thyroid stopped working) and my grandmother on my dad's side has rhuematoid arthritis! So you're probably right, that's why I've got what I've got. I can't believe you've got Chrones as well - that's not fun.

    I think the contraceptive pill thing is very interesting though. I first got sick with AIHA within 2 weeks of stopping taking the Pill having been on it for some time. The problem is with theories, is that we can talk about them but there's no proof? I also took Roaccutane (Accutane in US) for my skin many years ago and I have a theory that this could have triggered it? But who knows. Frankly, after 2 years, I don't really care how I got it, I just want to get rid of it. It's put my life on hold for 2 years and I'm just beginning to feel better (by no means out of the woods) and I'm desperate to move on with things.

    I'm so glad that the Rituximab seems to be doing its thing for you. Fingers crossed that it continues. It didn't do an enormous amount for me, but I'm giving my body a rest for a few months and perhaps by the end of the year, if I'm not much better, I'll give it another go.

    Ouisa - The lymphoma question. My understanding is that AIHA is very often a secondary disease to non-hodgkins lymphoma and that's why they test you. I've had 2 bone marrow biopsies - great laugh! So it is rare to have AIHA on it's own - like you and I appear to have it - THANKFULLY.

    I'm so please to have found you lot - it's such an unusual disease and can be so difficult for other people to understand and sometimes it's good to talk to people who really know what you're going through.

    Big love Babyfish x

     
    Old 02-24-2004, 04:15 PM   #13
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    Re: i got AIHA, now what?

    Did any of you have night sweats and hot flashes so bad that you were drenched from head to toe on a daily basis? I had it so bad that I was having a difficult time getting any restful sleep...and I was up sometimes 3-4 times a night going to the bathroom. I was told that it was either the anemia or caused by the cytoxan that was given to me back in October or both.
    I had my blood drawn on Monday and haven't lost or gained anything on my HGB...still at 11.3 which is good news.
    The funny thing is, since I have been on the Rituxan, I have only had a little bit of night sweats and hardly any hot flashes during the day. Maybe.. because my count is close to normal??? I'm just happy to be pink again!
    I'm 48 and hoping that I can bypass the menopause thing since I have had a double dose of the nights sweats for a year.

     
    Old 02-25-2004, 02:00 AM   #14
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    Re: i got AIHA, now what?

    Fotolady - So glad that the Rituxan seems to be working for you and that your blood is doing well.
    Night sweats - I had lots of those (changing twice a night) but only after my splenectomy. It went on for about 2 months. I was taking a lot of Paracetemol at the time to keep my temperature down which was regulary 102-104 and I know that they make me sweat. What do you mean by hot flashes? Could the sweats and the flashes have nothing to do with the AIHA and just be menapause related?

    So hot flashes - don't know, but I'd get a temperature/fever every other day depending on level of Hb. Starting very cold and shivering and then spiking to 102-104. This could last a few hours or a whole day/night. I was getting these every other day. Nobody has been able to explain why I get a fever. They seem to be much less regular now and certainly not as high. The doctors have decided (as they can't think of anything else) that I probably get them when I'm hemolysing. So the lower the blood count the more agressive and frequent the fevers. However, I seem to be pretty stable at the moment on 15mg of Prednisone and blood is around 11 so no fevers really.

    Babyfish x

     
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