autoimmune haemolytic anaemia - Page 9

RickB14 · 02-11-2008, 05:49 PM

FYI

I'm with Blue Shield of California - they approved Rituxan for my AIHA without any battle. At ~$13,000/treatment x 4 treatments, that was huge!
Rick

Deborinha78 · 02-21-2008, 05:24 PM

Oh my god, I am weeping........ I have been suffering this alone for the past year, no one but my hematologist understands whats happening to me, people around me have accept it as something too dificult to explain because it's not the anemia that needs iron!!! A year ago today I was taken in with a pneumonia, I was peeing blood and could hardly see for the dizzyness, my skin was bright yellow and my heart beat was 140. When I walked in the hospital throwing up, I thought it was just a bug, my hemoglobin was down to 5.2, within an hour I was connected to blood transfusions, drips, heart monitors, I had no idea what was going on.
Now I have Cushings Syndrome due to the amount of prednisone, I take folic acid and immune suppresssants, if I fail to take one pill, my count goes down within 3 days, I have had two serious crisis since Feb, 21, 2007 and received 9 weeks plasmapheresis. I have felt SO ALONE FOR SO LONG, I had given up hope of finding people with the this illness. I live in Spain, but I am english, I have NO INFORMATION except what my hematologist tells me. They are trying to save my spleen as it seems in my case the spleen is not necessarily the main problem. I am scared everytime I get slightly taquicardic, I am 20 pounds overweight and I want to learn how to make this become the norm in my life, my doc said this is for good!!!!!! I feel so relieved to have found this, there are so many things I have read that I acn identify with, as soon as someone sneezes I'm wary. I am being tested every 4 weeks, right now my count is good 11.9 but it's so unpredictable!!!!!

japlopper · 02-22-2008, 02:00 PM

Deborinha78:
Sorry this happened to you, but glad you found us! I know when you're first diagnosed, it seems hopeless, and the Prednisone does nothing to help those depressing feelings. You will get this under control.

As you've read, there are many different treatment options. The reason they start with Prednisone is that it usually works and works fast. Once you get stabilized, hopefully they can wean you down and then try something else next time. Careful monitoring is key here.

Make sure to ask your hema to test your B12 levels. They might be low - and if they are, getting B12 injections will help your hemoglobin somewhat. The only therapy I'm on right now is monthly B12 injections and folic acid.

Being on Prednisone is so awful - I really feel for you. IT really affects every aspect of your life. Are you sleeping at all? If you're having trouble, they can prescribe you a sleep aid - that often makes all the difference.

Hang in there!
Jill

Deborinha78 · 02-22-2008, 03:02 PM

Thanks Jill,

I am weaning off the pred, I actually came off it in October, but 4 weeks ago my tests were low, I got the dark urine and the heart thumping on so I was put back on the folic acid and the pred, but not the initial 120mg. I only take 10mg now and I will come off them on the 4th of March.

I have my face back, but I couldn't stand to look at myself in the mirror or go out and be seen. People stared and some just looked horryfied because I was irrecognisable.
I have learned not to take caffeine with the pred so I sleep(but I crave food so much I hate myself when I eat, I take more care of my skin, but i have had some really low moments convinced I was going to just die. It's a bit better now.
I have direct line with my hema, he's great, never wastes a minute, as soon as I feel a little bit ill, he tells me to go over for a blood test.

I just had a MRI scan because of the awful back aches I get, but i think I will mention the B12, next visit as I've been thinking this might be the reason my back hurts.

I also take 150mg of azathioprine, but that has never given me any trouble except the first 3 months with a bit of hair loss....... I grew a beard with the pred and was almost bald with the aztprn..... I felt like a teenage mutant ninja turtle LOL!!!!!

I saw some internet add for this 3 week CURE of AIHA, with a herbal remmedy, 160$ and in 3 weeks you are cured, how nuts is that???? in 3 weeks of coming off my meds I'd be dead!!!!! HEMATAB i think it was called, I hope no one falls for this!!!!!

Mel52 · 02-22-2008, 10:54 PM

My hubby has hemotlytic anemia warm coombs result. He had his spleen taken out last May. He had taken predisone which made him feel really bad but other options weren't given to him. We were about to change insurance companies and the doctor was concerned it would take months for the new insurance company to take care of him, so he had his spleen taken out. The dr thought non-hodgekins was the cause so his entire belly was opened up so biopsies of the organs could be done and a good visual. He also had a bone marrow test done while under. Everything was negative but an enlarged spleen. He went home the morning of the third day. Almost immediately the jaundice went away. He was sent to a new hemotologist under the new insurance plan and the dr was surprised removing the spleen was suggested prior to other methods or drugs. Anway, he is still positive for AHA but it is in remission. It is possible for the liver to start going wacky and for a cancer to show up but he has rejoined the living and is back on the golf course. Of course we have to be very careful of exposures to illnessess as not having a spleen puts him in a very vulnerable position if he gets sick. For now and hopefully forever, he is feeling great.