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    Old 05-17-2006, 12:51 AM   #1
    belindabea
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    Question London Calling ..............!

    I have Idiopathic Autoimmune Hemolytic Anaemia. It has taken two years to diagnose this condition. I have had two hemolytic crashs in that time where my HB has suddenly dropped to 6 and last time it went to 7. It took 6 weeks for my blood to rise to 8.9.

    My white blood cells and platelets are low too, does anyone else have this combination?

    The hemotologist is putting me on PREDNISONE ,has anyone had any side effects from this drug?

    If this drug does not work, removal of the spleen is a possibility, I would love to hear from anyone who has had their spleen removed.

    Any information would be gratefully received.
    Thanks
    Belindabea
    LONDON

     
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    Old 05-17-2006, 11:26 AM   #2
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    Re: London Calling ..............!

    There are a few postings on the anemia thread with regards to AIHA. On the thread entitled "Blood Disorders" if you go back aways you will find a topic entitled "....how long autoimmune hemolytic anemia"
    There is a large number of postings there where you will read about the experiences with the condition and also find a number of discussions around prednisone which is the primary treatment of choice for this.
    I wish you well. I've had my hemoglobin drop to below 6 so I know it's anything but fun. I'm now a full year in remission with HgB consistently around 12 but remain positive for the antibodies that caused the problem in the first place, so blood tests continue. I am very happy to say I'm no longer on prednisone.
    So do some reading and stay in touch. There's some really terrific people to lean on here!
    Les

     
    Old 05-17-2006, 12:05 PM   #3
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    Re: London Calling ..............!

    Hi Les,
    Thank you very much for your helpful reply. I shall go to the thread you recommend.
    I am glad to hear you are fine now, with a HgB of 12, you must feel fantastic!
    Glad you no longer need to be on Prednisone, its very reasurring to know that it works.

    Many thanks,
    Belindabea

     
    Old 06-07-2006, 08:52 AM   #4
    The Missus
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    Re: London Calling ..............!

    Hello,
    I just wanted to write you to let you know my experience with having my spleen taken out. You and I have a bit of a different disease...I have ITP (Idiopathic Thrombocytopenia Purpurra) which means I have a unusually low platelet count. I was diagnosed at 11 years old and put on Prednisone at that time. It worked for a bit but I had some unpleasant side effects. I was taken off it, had my blood checked once a month, told to stay away from anything "physical" that could bruise me etc. At 17 years old, my doctor decided to remove my spleen. He advised me to take Penicillin every day for the rest of my life. Not to realistic, so, at 26 years old and no Penicillin, I'm doing OK. Supposedly, when your spleen is removed you are an easy target for getting sick and whatnot. I've found that I haven't been any sicker than anyone else I know. The only exception would be last years case of Mono that I got some how. Let me know if you have any other questions and if I can help you out in any way. Cheers!

     
    Old 06-07-2006, 09:32 AM   #5
    belindabea
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    Re: London Calling ..............!

    The Missus,

    Thank you very much for your helpful reply. It`s very reassuring to know that you can lead a healthy life without your spleen!

    I had Mono a couple of years ago and I firmly believe it was this that kick started all my health problems (catching Mono at 48 is not good). Up until that point I was perfectly healthy and had not been to the doctor for 15years.

    I too have a slightly low platelet count around 120.

    Good health to you in the future,

    Belindabea

     
    Old 06-08-2006, 02:08 AM   #6
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    Re: London Calling ..............!

    I too face the prospect of a spleenectomy as a result of AIHA (in remission for 14 months).

    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 led a totally normal life. He didn't suffer any more illness than seemed normal and was always the first to get over the effects of any colds etc. He had major surgery for stomach cancer at 82 and had a pacemaker fitted at 85. Sadly he died last October at age 93 as the result of compications following a fall nothing that having a sleen could have prevented.

    I realise that we are all different but my father's unfailing sense of humour helped get me through my black days of early AIHA, and I am hoping that our shared genetics will get me through a spleenectomy.

    Good luck and love to everybody out there, I don't post much but the reasurance and information I get from reading all your posts has been incredible.

    Jo



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    Old 06-08-2006, 05:50 AM   #7
    belindabea
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    Hi Joglynne,

    I found your reply very interesting. The fact that your father had a speenectomy and lived a full and active life without drugs is very reassuring. He sounds like a wonderful father who I am sure is sadly missed.
    Did your father suffer with AIHA too?
    How long have you had the condition and are you on any medication?
    At what level is your Hb normally at?
    I hope you don`t mind me asking all these questions, but I have yet to meet someone with the condition!
    Many thanks,

    Belindabea

     
    Old 06-11-2006, 07:23 AM   #8
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    Re: London Calling ..............!

    Hi Belindabea,

    In order of your asking, No Dad never had AIHA,. Following his fall he was admitted to hospital. It took weeks but eventually it was established that he was having a series of minute strokes that were most probably responsible for all his symptoms (dementia & Parkinson’s). There was nothing we could do, Dad had made a living will, he did not want to be bedridden or a living vegetable or to be kept alive for the sake of it. In one lucid moment he asked me and his Consultant to let him go. He died quietly and with dignity. I miss him.

    I developed AIHA, I think after a throat infection, some 2 ˝ years ago. The throat infection left me feeling tired and lethargic, my son pointed out that people normally only got out of breath going up stairs not down as was happening to me and that maybe seeing the GP would be sensible. I have never really been ill before and my worry must have made the receptionist listen to me because I was given an immediate appointment (at 9am).
    To cut along story short, the GP sent me straight to hospital for blood tests (9.30am) and by the time I returned home at 10.30am the GP ‘phoned me to get back to hospital as they wanted to admit me . My RBC was 5 and it was decided to give me a blood transfusion, as I am AB Rh (D) neg this took 3 days to arrive and by then my Consultant was trying me on a cocktail of drugs which he hoped would work. He decided hold off giving me the transfusion for 48 hours, unfortunately by then my RBC was down to 3 I was unable to stand on my own and had developed a heart murmur. One week down the line it still was not established what was wrong but I was given a blood transfusion. I could have fought Mohammed Ali with a hand tied behind my back. I had soooo much energy. I was discharged from hospital but retuned as a day patient for a full body scan (cancer) and repeated blood tests. When everything else was ruled out I was told I had AIHA.

    I think I started on PPREDNISONE at 20mg a day with a side order of 5mg FOLIC ACID. The steroids were gradually reduced over a period of 14 months. About 3 months after I had started on the steroids I was prescribed ALENDRONIC ACID (FOSAMAX) and I took a 70mg tablet once a week. This was to counteract the effect steroids can have on bone density… I think.

    From what I have read I got off lightly with both the AIHA and the steroids. I have been off all meds for 14 months, I had blood tests every 4 weeks for about 6 months and now they are about every 2 months. My RBC averages at 12/13 and I am pretty much back to normal although I have been told that I will have AIHA for the rest of my life.

    This has been a right screed, I hope some of it may have helped. There are more of us out there than you think. Let us know how you are doing, we may never actually meet another AIHA victim in person but hugs and love can be sent over the net.

    Jo

     
    Old 06-13-2006, 12:58 AM   #9
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    Re: London Calling ..............!

    Hi Jolynne,

    Thank you for taking the time to write such a detailed and very useful reply.
    My AIHA began after I contracted glandular fever, so it was interesting to know yours began after a throat infection.
    It would be great to understand why the immune system suddenly starts acting up and what are the exact reasons for it doing so.
    Thanks for all your help and good wishes.

    Belindabea

     
    Old 09-19-2006, 11:26 PM   #10
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    Re: London Calling ..............!

    I had my spleen removed in 97 after discovering my aIHA earlier that year. The removal of my spleen did nothing to help my AIHA however my doctors assured me it does fix 2 in 3 people. I was just that unlucky one. I now have get a flu shot every year and i still catch every flu/wog/bug that is going round. However it's a process of elimination and that was the first to go after prednisone alone doesn't work for me. A combo of it seems to be working though and I have been much better since getting my gall out touch wood. I had throat infection at the very beginning too and extreme pain to the belly. Have been in remission for under a year now on meds and counting with bloods around 11 they don't hospitalise or tranfuse unless I drop below 8. Nice to meet you. Just letting you know my experiences, have also been on the threads AIHA how long as les44 suggests, great reading and everybody is different and has different needs and wants but there is some comfort in knowing you're not the only one.

    My doctor calls me his star patient cos I was bloody sick and have gotten 'better'. Just the mental side of me needs to stay strong and hopefully soon I can get back to work full time and one day hopefully have children. I'm only 25. I just hope all of this stuff doesn't effect that dream. I'm not ready to discuss this with my doctor as my mother still comes to every doctors session. I know this is an idiopathic disease but does anybody have anyone in their family who also has it? i.e. may be hereditary, I want my brother to get his twin girls checked for the antibodies but he said he'd rather not know. I also want to go overseas again, was lucky enough to travel through Europe and visit london whilst on meds this way i knew i wasn't going to crash whilst away. Sorry if i ramble but after sort of being kinda well blood wise for year people forget my everyday struggles and the daily 18-23 tablets i must take. I just need to vent. Thanks for listening.

     
    Old 09-20-2006, 12:08 AM   #11
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    Hi Jbee6, Thank you for your reply. I think those of us who have the idiopathic type of AIHA have some trouble in finding the right medication and I have been told removing the spleen is not necessarily the answer. I am at the moment waiting to start on prednisone.
    I too wonder if it is an hereditary thing, but my consultant is almost certain it isnt.
    I have had three transfusions now, my Hb dropped to 4 last month, which was very frightening. I caught a virus which affected my liver and bone marrow and I had no cells to fight off infection. After the transfusion I went up to 7 and then it climbed up to 9.3, then just before going on holiday it went down to 8 so I had a couple of units, bringing me up to 10 to help in case i crashed on holiday. When I got back from a weeks holiday, it had gone back to 8!!!!
    Its such a horrible complaint. Takes over your life. Leaves me feeling pretty down sometimes. I too had to give up working.
    Can I ask you a question, before the IAIHA was diagnosed, did you suffer will any illness before hand or any stress? I had glandular fever before mine was diagnosed (mono). I am now trying to get some information into why we are affected by it, and what triggers it. I would be grateful if you could help. My daughter suffers with Rhumatoid Arthritis which is an autoimmune diesease, this we think was bought on by stress.
    Great to hear from you, I am sure you will have no problems with a baby - good luck.
    B

     
    Old 09-20-2006, 12:12 AM   #12
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    Hi Jbee6, Thank you for your reply. I think those of us who have the idiopathic type of AIHA have some trouble in finding the right medication and I have been told removing the spleen is not necessarily the answer. I am at the moment waiting to start on prednisone.
    I too wonder if it is an hereditary thing, but my consultant is almost certain it isnt. I`ve had EVERY test done.
    I have had three transfusions now, my Hb dropped to 4 last month, which was very frightening. I caught a virus which affected my liver and bone marrow and I had no cells to fight off infection. After the transfusion I went up to 7 and then it climbed up to 9.3, then just before going on holiday it went down to 8 so I had a couple of units, bringing me up to 10 to help in case i crashed on holiday. When I got back from a weeks holiday, it had gone back to 8!!!!
    Its such a horrible complaint. Takes over your life. Leaves me feeling pretty down sometimes. I too had to give up working.
    Can I ask you a question, before the IAIHA was diagnosed, did you suffer will any illness before hand or any stress? I had glandular fever before mine was diagnosed (mono). I am now trying to get some information into why we are affected by it, and what triggers it. I would be grateful if you could help. My daughter suffers with Rhumatoid Arthritis which is an autoimmune diesease, this we think was bought on by stress.
    Great to hear from you, I am sure you will have no problems with a baby - good luck.
    B

     
    Old 09-20-2006, 09:16 AM   #13
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    Re: London Calling ..............!

    hi to all of you
    i just went to the very beginning of this thread and i am fascinated! i've posted my story elsewhere i believe on the anemia board somewhere but even though my dr says i am iron deficient anemia so much of what you are all talking about applies to me and i was wondering maybe they got my diagnosis wrong or stopped and didn't look further? anyway i am on the prednisone because of terrible joint pain and burning sensation to the iron they infuse me with once to twice weekly. my hemogl dropped to 5 in dec 05 and as of today they have only been able to get me to 10 and it slides right back down. the prednisone has some real nasty side effects- tremendous weight gain-tremendous appetite-etc i posted that stuff too i think on drug board-but i have fibromyalgia and i wonder if they missed something cause no one canfind a source for my blood loss-just wodering and it feels good to know some people out there know how i'm feeling thanks

     
    Old 09-21-2006, 07:50 PM   #14
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    Re: London Calling ..............!

    Can I ask you a question, before the IAIHA was diagnosed, did you suffer will any illness before hand or any stress?

    No major illness beforehand ever. But I definitely think stress brings this on. My major relapse last year was brought on in my opinion by the fact they had me overworked creating web pages, teaching ipt a subject i had not been trained to teach and was trying to learn myself, doing technician stuff too and and just becoming run down in general. I have been dealing with it for nine years and prednisone seems to work for everyone else except me. After being weaned slowly off prednisone I would relapse everytime in two weeks. But just seemed to go away when I was not stressed enjoying life and going to uni. I was out everyweek having a ball. Now I'm up and down with my health and when I'm stressed I get sick easily and stay that way for longer. My docs don't like to tranfuse me until i drop below 8 otherwise the antibody seems to kick into overdrive destroying the newly tranfused red blood cells plus more.

    Strange you mentioned your liver I had huge problems with my liver counts last year before and after the removal of my gall seems to be back to normal now though. Had a liver specialist and all.

    I'm from Rocky, QLD AUS and you? My hemo doc is great. I think he's what keeps me going. What do you do? I just do relief teaching now to get by, too afraid to move out of home in case i get sick again and my parent would be left to move me out or pay the rent etc.

    I get down lots of the time too, I try to tell myself yesterday is history, tommorrow is a mystery today is a gift that is why they call the present. Easier said than done to live for today etc. but puts life in perspective.

     
    Old 09-23-2006, 07:41 PM   #15
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    Re: London Calling ..............!

    jbee,
    Saw my hemo doc last week. He figures I'll continue to have the antibodies for the rest of my life. He also said in cases like mine most people relapse within 3 years of original illness. Sort of feel like a ticking time bomb here, but keep trying to put this out of my mind.
    Told the doc I was scheduled for a hysterectomy and he said an emphatic "no". Says he doesn't know what the trigger is so I should avoid any surgery that's not life saving. Have you heard anything like that?
    Anyway, going on with my life and if and when I have another hemolytic crisis I'll just cross that bridge when I get there.
    Currently suffering from very bad jet lag. It just seems like everything I get takes much longer to recover from then before AIHA.
    CHEERS!
    Les

    P.S. The antibodies is not hereditary, thank goodness!

     
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