evans syndrome

hey guys,

is anyone familiar with this condition? i was diagnosed with itp over 4 years ago and see my haem regularly, 2 weeks ago my partner noticed that the whites of my eyes had a slight yellow tinge to them so off i went to the doc for a blood test, all my results came back normal apart from my bilirubin count which was high, my doc explained that this could be caused by haemolysis, which apparently is early destruction of red blood cells, i asked if this could be related to my itp, which she replied she didnt think so, and that she had to do more tests, so today ive went online and searched for itp and haemolysis and up popped evans syndrome, which it said is a combination of the 2, i still dont know for sure if this is what i have but ive never heard of it before and apparently its pretty rare, does anyone else have any experience of this?

elaine xx

yes, first had hemolytic anemia 11 years ago. It is autoimmune destruction of red blood cells and is treated pretty much the same way as ITP. I was on prednisone for a while and then had my spleen out. The hemolytic anemia went into remission but I developed ITP in 2005. It is not very common but there are a few other people on the discussion forum that have it.

Evans Syndrome can be the destruction of the platlets, red blood cells and white blood cells. I too have had ITP, since 2005. I had a relapse in 2007 and in 2009 I had severe hemalatic Anemia. My Hemo thinks I have Evans, but could not be really sure till I have a bout with the white blood cells. Evans is normally a childrens disease and I could not find all that much info on it, but ITP used to be rare also, now there is more and more everyday.

My treatment has been the same for both issues, luckly I have responded with the Pred. Although I really hate Pred I feel lucky that I respond quickly. I have not had my spleen out either, although they tried to get it. I wish you a speedy remission this time around, are you able to be off work with the anemina? I was off about 6 weeks, of course I was really bad. I thought I had a heart problem and went to my reg Doc first. He did blood work and put a heart moniter on me. Next day they tell me I have to go to the hospital for a transfusion! Very low count and dangerous. Of course I said no!, and called my hemo and he saw me right away and started the pred. I will not go to the hospital again if I have anything to say about it!

I'm an adult with Evans Syndrome. We have a rather large support group going on Facebook . Our blog is located here . We are also in the process of bringing our main website back up (we were down because we got hacked), and when it's out there, you'll be able to hit us here . We are the Evans Syndrome Community Network. We consist of people all ages, from all over the world. If you need help, want to ask questions, or just want to lurk, feel free to join us.

~Peace~

I was diagnosed with ITP on February 14th of this year, three days later (while in the hospital) my Hemoglobin dropped, and my diagnosis was changed to Evan's Syndrome...I'm still learning what all of it means, but I've been off prednisone for six days now, and I'm really nervous of what will happen at my next doctor's appointment :S

DanielaG, it's completely natural for you to be nervous. It's a scary thing to walk into a darkened and unfamiliar room…and that is more or less what you're doing. You're not the only one in the room, though. There are more of us than you realize…you just can't see us yet. The Facebook group has over 300 members from around the world! Our motto is "Together we can make a difference, standing shoulder to shoulder."

It's true…Receiving a diagnosis of Evans Syndrome is a frightening thing. It's workable, though. You can get through this. If your counts drop again, there are many ways to treat you, either with more prednisone, or with a host of other drugs that are usually used as anti-rejection medications for people who are post-transplant. And there is one drug they use that was formulated for people with leukemia and lymphoma but works on some autoimmunities: Rituxan (rituximab).

Rituxan is a chimeric monoclonal antibody that is created from the ovaries of genetically altered Chinese hamsters! Crazy science. Anyway, they give it intravenously, usually over a 4-5 week period. Results are seen up to 6 weeks following the last infusion. In children, remission is found about 70% of the time following Rituxan, and in adults it's more like 50%. I was treated with Rituxan and have been in remission for 6 years. Lifetime remission can be achieved, but there is no real cure for Evans Syndrome.

Another treatment involves removal of the spleen, however this is a risky and invasive procedure. Besides…You need your spleen. It helps your body fight off infection, and without it you are susceptible. Also, many people who have their spleen removed end up back at square one just months after the surgery, their Evans Syndrome refractory even to surgery. The body seems to just find a way around this tactic.

In cases where no medication is effective and splenectomy is unsuccessful, bone marrow transplant has been found to be a possible course. This, again, is risky…because they have to give large doses of chemotherapy to completely shutdown the immune system prior to the transplant. However, in cases where transplant is successfully completed, Evans can completely disappear…Thus a cure, of sorts, is possible through completely replacing the immune system.

No matter what happens, remember that you really aren't alone in that dark room. We're with you, standing shoulder to shoulder.

~Peace~

I have ITP since 2006 and my doctor did mention somewhere that I may be having Evans cause my haemoglobin went to 6 and I fainted one day.
Luckily I am completely cured as on date. what helped me was - forcing myself to think positively and homeopathy.
I wish you all a speedy recovery.