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  • AIHA - Auto Immune Haemolytic Anaemia

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    Old 03-23-2004, 03:21 AM   #1
    jbee6
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    AIHA - Auto Immune Haemolytic Anaemia

    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.

     
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    Old 08-03-2005, 07:00 AM   #2
    jbee6
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    Re: AIHA - Auto Immune Haemolytic Anaemia

    It's me again, Well the Mabthera - Rituximab treatment didn't go so well....after two treatments something went dreadfully wrong....I was hospitalised and my haemoglobin went down to 54....blood transfusion after blood transfusion in Rocky hospital followed by a trip to Intensive Care in Rocky and Royal Flying Doctor flight down to Brisbane...Can't remember about a week and half of my life as they put me on amnesia drugs in Intensive Care....they had to drain my lungs of fluid which had some kind of infection like pneumonia and the doctors are still baffled to know what caused it. After waking up in Brizzy with no idea where I was they couldn't treat the AIHA or give me any more blood once it (haemoglobin) had creeped up to 70 as otherwise I would just start haemolising rapidly again. They had to treat the infection first. After about a week in the Mater hospital the infection subsided and they could start treating the AIHA with prednisone yet again (100mg)...the very drug the doctor was trying to get me off in the first place with trialing the mabthera. They now have me on a combination of Cyclosplorin a drug they give to transplant patients, prednisone weaned to 50mg now and imuran plus many more tablets to combat the side effects of the prior mentioned ones. They made me stay in hospital for 4 weeks this time and then stay down in a motel close to the hospital for a following 2 as an outpatient. But I have good news and its about time as my family and I have been to hell and back this time. It seems that the cyclosplorin is working as my haemoglobin has slowly but surely crept its way up to 115. I'm just worried about when they start tapering the steroid yet again. They can't keep me on it cos I'm 24 and the doctor reckons I'm gunna be a frail old lady if he doesn't get me off it.

    I've had a splectomy, been treated with prednisone and imuran. They checked this time to see if the spleen had re-grown it hadn't. They still haven't ruled out giving me the other 2 doses of rituxan/mabthera before coming home. I was so hopeful in that drug Angelindisguise and think I would still give it a go if this doesn't work out in the long run. Has anyone had to go through all these different treatments?????? Apparently there are other things they can try still but may effect my fertility...So I'm now thinking seriously about getting some eggs frozen....

    I was living a normal life...a stressful one at that being a teacher. Was wondering if anyone else was going through extrememly stressful periods in their lives when they relapsed of were diagnosed as I was.....I just wanna live a normal life...do any of you fellow sufferers live active lives with full time jobs?

    This time its floored me like never before I'm off work for the semester even though my blood counts are up...I'm was seenig a physciatrist in Brisbane and am on medications to help sleep and combat the depression. Has anyone been through all these treatments?

    If anyone wants to chat about their history with this disease please...I'm feeling a little like the only one out there who tried everythin and now more.

    I know I should be happy the drug is working.....but soo scared about tapering the steroid again.

    Looking forward to chatting with anyone.

    Jae

     
    Old 08-04-2005, 12:44 AM   #3
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    Re: AIHA - Auto Immune Haemolytic Anaemia

    Hi Jae,

    So sorry to hear that you are having such a bad time. My heart goes out to you that you should feel so down . There are a lot of us out here, but it can be hard when you feel isolated in your illness and people can’t understand that iron does not cure all anaemia.

    18 months ago I was admitted to hospital with a blood count of 5. I walked into hospital under my own steam but by the end of my first week in hospital I had developed a heart murmur, and could not walk 3 steps without gasping for breath. I was diagnosed as having AIHA.

    At first the drugs (prednisone + associated support drugs) I was given did not seem to be working, my blood count was still dropping each day. I had an ultrasound scan which showed my spleen was very enlarged as expected. My consultant, suspecting the worst, arranged a CT scan which thankfully ruled out cancer. On day 10 my blood count dropped below 3 and my consultant decided that my body was under to much stress and bought me some more time by ordering me a blood transfusion. (getting the blood was a whole different story).

    3 days later the blood arrived, I was in a bad way but my RBC had risen to 3.1
    Boy was that blood good. I went home the next day returning every 3/4 days for blood tests. My RBC , which on discharge from hospital had been 8, took a small fall but generally kept rising.

    Over the next year I found that too much stress would be reflected in my blood count and my reduction from my original 80mg of prednisone would be frozen for several weeks. I have not been taking any drugs now for 4 months and my RBC has stayed around 12. I still have regular monthly blood tests and it looks like I have developed gallstones as a side effect of the AIHA but it feels like I have been very lucky so far.


    My consultant is marvellous he has explained what he has been doing every step of the way. I know that I could have a relapse at any time but I refuse to worry about what I can not control.

    Reading this Board has been a lifeline to me and I hope that you will draw as much support as I have from it. Keep posting and let us share what is happening to you.

    Jo

     
    Old 08-04-2005, 04:55 AM   #4
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    Re: AIHA - Auto Immune Haemolytic Anaemia

    Thankyou soo much Jo for replying...I see my haemotologist next Tuesday and should know what they plan to do with me by then (he only flys up to Rocky every 3 weeks from Brizzy RBH and hasn't seen me since being treated at the Mater in Brizzy)...probably taper the steroid a bit more I'm guessing....I am not hurrying back to work this time though...I know I'm no doctor but I think stress has a lot to do with my haemoglobin dropping and the haemolysis kicking in and at this time of the school year I know stress would play a huge factor. Plus the kids would have a field day with what my medications are doing to me. Jo do you work full time? Have you got understanding bosses? Mine rang today chasing kids profiles....I can't believe they are requesting stuff from me when the last thing I want to do is look through all my paper work getting stuff out for them is the last thing on my mind...I nearly died this time my priorities in life have changed....I wonder if they would still be calling my mum if that had of happened. At least I don't have to go back to work till next year if I don't want to the psychiatrist wrote me a medical cert. Start fresh or change to something a little less stressful.
    Jae

     
    Old 08-05-2005, 12:21 AM   #5
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    Re: AIHA - Auto Immune Haemolytic Anaemia

    I took a career break from my full time job 2 years ago when my 91 year old father collapsed from heat exhaustion and came to live with my husband, son and me. Caring for him is both mentally and physically draining and I have wondered if maybe my AIHA has been triggered/made worse by the amount of stress that I have been under. (It’s so frustrating not knowing what was the cause of this infernal condition)

    I worked for a government department here in Manchester, England and can only say that, from past experience with other colleagues, my employer’s tolerance to long term medical conditions is not brilliant. They have been very supportive to me, and my job is still waiting for me, but I know that if they were paying my salary I would have receiving warnings about taking too much time away from work.

    After being so ill my priorities have also changed. I am 57 and want a life that is not controlled by AIHA. I have a fantastic husband and son and they have been with me every step of the way but I still worry that it will all start up again. I know that there will be a time in the future that my father will have to move to full time care ….will this stress be too much….it’s the not knowing.

    ‘I am going to be more positive and not worry about things I can’t change’ that’s my mantra these days.

    Well, sorry for the less than upbeat answer, I hope all goes well on Tuesday – I will be thinking of you and keeping my fingers crossed that the steroids go down. Let us know what happens.

    Jo.

    Add. About your spleenectomy. My father was the first person in England to survive the removal of his spleen. This was in the1920s. He was never given any form of drugs following the operation and apart from the effects of old age is still going strong at 93.

     
    Old 08-07-2005, 12:56 AM   #6
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    Re: AIHA - Auto Immune Haemolytic Anaemia

    Well my Qsuper forms arrived today for me I work for a government dept too....Bad news cos I haven't been with them for more than 10 years and it is a pre-existing condition they probably won't cover me. But I have worked for them with this condition for the whole three years its the stress of work is why I'm not returning not my AIHA. Well just wait see my doctor on 'Wednesday' sorry not Tuesday and then the shrink the following Wednesday and see what they say.

    Will keep you up to date.

    Jae.

    Last edited by jbee6; 08-07-2005 at 12:57 AM. Reason: spelling error

     
    Old 08-15-2005, 08:09 AM   #7
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    Re: AIHA - Auto Immune Haemolytic Anaemia

    Well went to the haemotologists this week and he scared me a fair bit...even rubbed my shoulder (never done that before....made me come straight into his office bypassed the queue I MUST BE SPECIAL NOW! to get that kinda treatment) and explained a lot more about what I had been through and what it could mean for me in the future....getting a bone density scan done tommorrow to check on the bones and he said I may need treatment otherwise I could end up with osteoperosis....been on steroids off and on for going on 8 years now....if the the weaning of steroids along with the use of cyclosplorin doesn't work he talked about other options today like chemo therapy type drugs and/or monthy itragam treatments...sick of the high dose steroids am gaing all the weight I had lost....I see a physciatrist on Wednesday hopefully that will help with all this school stuff and anxiety/stress I am feeling...I'm just soo lucky to have a great family and boyfriend. He still loves me chipmunk cheeks and all.

    Jae.

     
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