Hi everyone,

I am a new member and am happy to have found this support group.

I have just been diagnosed with autoimmune hemolytic anemia....the one in which I have developed antibodies to my red blood cells.

My hemoglobin was 6.3 when I had my first blood test (almost two weeks ago). It has ranged between 6.3 and 6.8 since then.

I just started prednisone to control the hemolysis and am hoping that this will work.

Is there anyone else with this disorder? I know it's quite rare and am very interested in getting to know others with it. I have no idea how it will affect my lifestyle or my career.

Thanks in advance.
Jackie

I was diagnosed with hemolytic anemia back in August I was amitted in the hospital with a blood count of 4.1. The doctor had me stay for a week on meds and hemoglobin drip for a couple of days & by the end of the week was released with a blood count of 9.1. I have been following up with a hemotologist since then and have been on predisone since 40 mg a day. As of last tuesday the doctor staring weaning me off the dam predisone. I hate that stuff and have suffered all the side effects that go with it. Weight gain, sleepless nights, night sweats, mood wings, and worse of all chipmunk cheeks!!!!
Two weeks ago the doctor started me on procrit, I go in to have my blood drawn to make sure my count is up and the nurse gives me this shot which in suppose to help my body make red cells. Well as of last week my levels at least did not drop they stayed the same so maybe this medicine is working?
Good luck!

Hi Glad to meet you, I was diagnosed june of 2000, my count was 4.6, I was in the hospital for 5 days that time, then this last april I dropped again to about the same, in the hospital for 3 days that time both times I was given 2 units of blood, and put on prednisone. So now 40 lbs later unfortunatly My hemo did Retuxin treatment which seemed to help, but I am now feeling like I have dropped again and am scared, but I am going to my Hemo this am so I will find out. I understand your fear and ?'s it is a scarey thing especially since it is not real common, I understand, and am glad I found this site, am willing to talk anytime. Take Care!
Hi everyone,

I am a new member and am happy to have found this support group.

I have just been diagnosed with autoimmune hemolytic anemia....the one in which I have developed antibodies to my red blood cells.

My hemoglobin was 6.3 when I had my first blood test (almost two weeks ago). It has ranged between 6.3 and 6.8 since then.

I just started prednisone to control the hemolysis and am hoping that this will work.

Is there anyone else with this disorder? I know it's quite rare and am very interested in getting to know others with it. I have no idea how it will affect my lifestyle or my career.

Thanks in advance.
Jackie

Hi
I've just come across this site today while I was doing some research for my mum who suffered from AHA.
Althought I do not know much about it, I know that when she was admitted to hospital her blood count was below 4, she also suffered damage to an optic nerve due to the nerve being starved of oxygen (this was the explanation given at the time) resulting in loss of vision in one eye.
I have been unable to find any literature relating optic nerve damage and AHA. I wonder if anyone who visits this board might have come across it.
It would be greatly appreciated if anyone with any information could reply.
Thank you
K

Hi Glad to meet you, I was diagnosed june of 2000, my count was 4.6, I was in the hospital for 5 days that time, then this last april I dropped again to about the same, in the hospital for 3 days that time both times I was given 2 units of blood, and put on prednisone. So now 40 lbs later unfortunatly My hemo did Retuxin treatment which seemed to help, but I am now feeling like I have dropped again and am scared, but I am going to my Hemo this am so I will find out. I understand your fear and ?'s it is a scarey thing especially since it is not real common, I understand, and am glad I found this site, am willing to talk anytime. Take Care!

Hey Debeeg I know what it feels like I am slowly being weaned off the Prednisone down to 20mg aday and have gained 25lbs since august 2003. I also have been receiving Procrit shots for the anemia but I don't feel any better? When I went to the Hemo last Tues. my blood ct. was down to 9.8 the week before I was 10.1 ???? It seems like I am getting nowhere, but the doctor keeps saying its a "SLOW PROCESS"! I am giving him until after the holiday and then I think I am moving on to get another option. Well hope you feel better
Marilyn

Hello everyone,

It's nice to know that there are some people on this site with AIHA, even though it's an awful disease. Debeeg and Marilyn, I hope you are feeling okay right now. I have just stepped down the prednisone to 30 mg/day and will be 20 mg/day in a few days. The major side effects for me are constant hunger and insomnia. Oh....and water retention....my rings look like they are on sausages instead of fingers now.

My latest hemoglobin was 10.8...still anemic but much better. Did you two have really dark urine when you were diagnosed? Mine was the colour of tea and I've decided that it will be the "sign" of the hemolysis starting up again when I'm looking for relapse.

K, I've never heard specifically of nerve damage due to anemia but it only makes sense. Our bodies need so much oxygen and if your mum had a hemoglobin of under 4, then her body would be starved of oxygen. Her heart can only pump so fast to send around the existing red blood cells. For me, my major symptoms were rapid pulse (110-120 beats per minute resting), faintness, dizzines and my periods stopped. That was at 6.3 hemoglobin. I know that was enough to make my doctors sit up and take notice. I can imagine how excited they were with a hemoglobin below 4!

Jackie

Hey Jackie I am very happy that I have found this site also.
Yes my urine is very dark, That is one sign I look for the others are sometimes I turn real yellow, most of the time I get a pulsating in my ears. I am on 70 mgs a day of prednisone, and am yellow as can be, take care!
DebHello everyone,

It's nice to know that there are some people on this site with AIHA, even though it's an awful disease. Debeeg and Marilyn, I hope you are feeling okay right now. I have just stepped down the prednisone to 30 mg/day and will be 20 mg/day in a few days. The major side effects for me are constant hunger and insomnia. Oh....and water retention....my rings look like they are on sausages instead of fingers now.

My latest hemoglobin was 10.8...still anemic but much better. Did you two have really dark urine when you were diagnosed? Mine was the colour of tea and I've decided that it will be the "sign" of the hemolysis starting up again when I'm looking for relapse.

K, I've never heard specifically of nerve damage due to anemia but it only makes sense. Our bodies need so much oxygen and if your mum had a hemoglobin of under 4, then her body would be starved of oxygen. Her heart can only pump so fast to send around the existing red blood cells. For me, my major symptoms were rapid pulse (110-120 beats per minute resting), faintness, dizzines and my periods stopped. That was at 6.3 hemoglobin. I know that was enough to make my doctors sit up and take notice. I can imagine how excited they were with a hemoglobin below 4!

Jackie

Hey Jackie Now I know I am losing it I just typed this long reply to your post and then for some reason lost the whole thing :( and now I am retyping it and trying to remember what I wrote and thats not easy with the memory that I no longer have LOL Glad to hear the news about the predisone thats what I am taking 20mg a day and I can relate to the side affects, but the one thing I can't stand is the pounding in my ears and head when I do certain things, that drives me crazy and it is so hard to explain to someone who looks at you and says "are you alright"? It doesn't last long but I can just imagine the look on my face when this happens.
Well I go to the Hemo this Tues. my count was down alittle last week 9.8, the week before it was 10.1 and I am receiving Procrit shots to help make new red blood cells, but this will be my 6th shot and I don't think anything is happening and my Hemo doesn't seem to concern (that's what I think)
Yes my urine was really dark when I was first diagnosed, and certain times of the day it still is?
Well keep me posted on ur progress, and I hope now when I go and post this reply you don't get this one and the first one I typed :) Marilyn

K, I've never heard specifically of nerve damage due to anemia but it only makes sense. Our bodies need so much oxygen and if your mum had a hemoglobin of under 4, then her body would be starved of oxygen. Her heart can only pump so fast to send around the existing red blood cells. For me, my major symptoms were rapid pulse (110-120 beats per minute resting), faintness, dizzines and my periods stopped. That was at 6.3 hemoglobin. I know that was enough to make my doctors sit up and take notice. I can imagine how excited they were with a hemoglobin below 4!

Jackie

Hi Jackie

Well my Mum's story is fairly complicated, but basically she was feeling unwell for several weeks and had the doctor visit her at home a couple of times, they first of all said it was a virus but when she didn't seem to be getting any better, they arranged blood tests, the following week my mum got worse and the doctor was called out again, but she still didn't know what the problem was, had the doctor checked my Mum's notes before she left the surgery, she would have seen that the blood results were back and that her blood count was 6, two days later my mum collapsed and was rushed into hospital and needed an emergency transfusion (her blood count was now below 4), when she "came round" the next day she complained of weak vision, after seeing the eye specialist she was told that she had suffered optic nerve damage and had she been brought in earlier her sight could have been saved.
Obviously she was very upset and depressed by this news and decided to seek legal advice. She was told that she had a very strong case against the doctor for incompetence. Nearly 3 years later this is still ongoing as the legal people are now saying that there is no link between AIHA and optic nerve damage, so not only does she lose her eye sight but a fortune in legal fees too. She still has the backing of one doctor who believes that her sight could have been saved, but it seems that the legal professionals are being blinded with science beyond their understanding and are getting very cold feet. Hence my need to understand more about AIHA and the damage it can cause.
I’ll keep looking!
In the meantime I wish all those suffering from this illness a speedy recovery. I had never heard of it before my mum’s experience. I think sites like this are a great support network.
:) K

Hi, I have just found this site and feel great to be able to talk to other people who have this problem. I have had in once and got back to normal only for it to come back again. Does anyone know if it keeps coming back or how to prevent it happening. my blood count has risen to 10 and I am on 20 mg of prednisolone a day. I thought that I was going mad with the pounding in my ears and it is good to hear that I am not the only person this happens to. Last time I put on a lot of weight but this time I am losing weight, It doesn't make sense. I also get very tired and have difficulty sleeping. If anybody can give me advise I would appreciate it.