In remission now for 10 months but still have blood work done regularly. Have had serious breathing difficulties now for 2 weeks. My family doc has tried antibiotics and multiple inhalers, nothing really working. Just wondering if anyone that's had a relapse had the breathing problems. I do have asthma, but attacks are very infrequent and actually never had any when my anemia was active. Just wondering if I should call my hematologist. He's not so pleasant when the problem's not related to the blood disorder. Thanks for listening.
Les

Les,
I'm glad to hear you've been in remission for 10 months. In keeping track of what everyone has written about their experience of hemolytic anemia, it seems that there are different telltale symptoms. Someone said they get flu like symptoms and severe headaches. I don't believe I get that (even though it's funny that a few times I did have some wierd experiences like that that were brief and I never linked the two). Mainly I hear a pulse in my ear and get tired. Is your blood doctor keeping constant check on your blood count? If not, I would ask it to be checked to see if your breathing difficulties could have ANY relation to the anemia. As much as my veins are so bruised, my doctor has me monitor my blood weekly while my blood is screwy and then twice a week, to once a month after that. (ouch). I hope your breathing clears up for you. Alergies are horrible right now and hopefully something for that will take care of it.

Hi, I've been reading this board for a while and thought I'd chime in. I was diagnosed in July 98 with Ideopathic AIHA. With a HCT of 18, doc wondered how I walked in on my own steam. I am on my 4th relapse. Having gone 5 years between the first and second episodes. I thought it was a one time thing and I was done with it forever. Hah! Since the 2nd relapse, I haven't gone but a few months in remission. Prednisone has worked well in the past, my body responded quickly - not only with the blood, but weight gain and bloating and chipmunk cheeks and a huge neck. I've never had a transfusion, was given the choice if I wanted one and refused since I was doing well at that time and it was all new to me. I was so afraid it was leukemia or lymphoma. (I have a son who was diagnosed with cancer (brain tumor) in 95) This last relapse, my h&h dropped each time I lowered the prednisone. I had a course of rituxin in Nov., my hematacrit went to 43.6 within a few weeks. My doc was very enncouraged. I did well until I started lowering the pred again. Last week I had a bone marrow biopsy and a CAT Scan. Just to make sure nothing is lurking. Naturally, I'm worried and hope nothing is found. Doc told me I still may have to have my spleen removed. I am sure it is still enlarged.

It took a few years for me to recognise the symptoms and not dismiss them as nothing. Dizziness when I bend over or get up too fast, tiredness, fast heart rate. I look at my palms and inner eye lids, nail beds, lips and gums, if they are pale, I know I'm hemolysing again and get a blood check.

I am on 5 & 10 mg. prednisone now. I want off this stuff. :(

Look forward to talking to you.

Don't you just hate being drawn to read on a medical site? I always think..yes,this is what I have, but what good does it do to read about it? And then I sign in again. In reading your letter BlueBelle2, what it tells me is what I've come to know. It crops up whenever. I originally thought it must be stressed induced, as at the time it first came up the beginning of 97, I was in a relationship with the boyfriend from hell. I had 3 bouts during that time. But during my 5 years of remission, I had some rather stressful times in my life. My first relapse a year ago wasn't an emotionally stressful time, but rather during a really bad flu type virus. And I did rush getting off the prednisone then, so perhaps that led to my last relapse this time. Now, I'm not rushing to get off the prednisone but am actually following my doctors advice meek and mildly (the probably wonder where the REAL Joanne went). Yes, I am terribly tired of never knowing when and where it will hit. I too, pay very strict attention to my body and signs that it's coming on again, but my doctor is very good about monitoring me and never let me go for long without a blood test, even during the 5 years of remission. As I read most everyones letters, I REALLY DON'T want to be put on all of these other drugs, because at least I know what to expect from prednisone. I haven't had a blood test in 2 weeks and go in next week to see if my blood levels are staying as they shood. That will be the telltale one as to whether I can get off prednisone or not. And good Lord, I hope it goes in remission and STAYS that way. I am a very healthy person other than this, and this is soooo ANNOYING. (but Thank God it isn't cancer)

I had an appt yesterday, I had dropped down to 5 mg pred, my H & H both stayed up this time so am on 2.5 mg. I'll have it checked again in 2 wks. if it's still good, we'll try to go off, if not he wants to try the retuxin again. Splenectomy is a last resort. I am happy to report that my bone marrow biopsy and CT scan were negative.

I learn so much reading health boards. My son is a cancer survivor and I have always been drawn to read them. But, yes it would be nice not to have any reason to look at them. Although, seeing the people that I see because I go to a cancer clinic and because of my son, I will not complain too much. :)