DOES ANYONE HAVE EVANS SYNDROME OR ALPS(CANALLE SMITH). would like to ask how long you have had them, what meds have worked and if stem cell transplant was recommended? Thanks

My daughter, 6 years old, was diagnosed with evans about 3 years ago. she had her 1st AIHA crash this past august...VERY SCARY.

how are you currently doing. find anything to help or mitigate your symptoms.

we should share m.d info and treatments.

mitch

My daughter, 6 years old, was diagnosed with evans about 3 years ago. she had her 1st AIHA crash this past august...VERY SCARY.

how are you currently doing. find anything to help or mitigate your symptoms.

we should share m.d info and treatments.

mitch
hI gABBY sORRY TO TAKE SO LONG TO REPLY oUR DAUGHTER IS 12 AND IS EXPERIENCING A CRASH RIGHT NOW. wE HAVE UPPED HER MEDS AND WAITING FOR COUNTS TO GO UP. WHAT POINT ARE YOU ALL AT?

I have both ITP and AIHA, but my hema never said it's Evans Syndrome, even though Evan's Syndrome includes low platelets and low hemoglobin.

I've had ITP since 1990, and AIHA for almost two years. I had my spleen out for the ITP, which worked for awhile, but I have had some platelet crashes in the past three years. Most of the time with both conditions, they treat me with Prednisone or intravenous gamma globulin, also known as IVIG. Many people with these conditions are finding success with Rituxan, a relatively new drug for these conditions, but one that has been used in lymphoma for quite some time.

Prednisone has terrible side effects, but it does raise my counts. I've yet to try Rituxan because insurance isn't guaranteed to cover it.

Noone has ever mentioned a transplant to me. Most of the time I'm ok, though. I've learned to recognize the symptoms and catch things before they get too bad.

Jill

Jill Thanks for the info. Amy is on the verge of having her imuran doubled to help with her falling counts. We hate this drug and its potential toxicities. She wants no part of another round of steroids as at 13 a puffy face/weight gain are terrifying to her. The alternate to that/ being dangerously ill should counteract that concern but Iguess we were hoping to go to ritximub/ivig treatments instead. We are interested in the cost here in canada and the results.
we also need to find someone our daughter age to speak with her as at present she is going thru a depression/ someone with Evans would be a blessing and in Calgary would be a miracle. She has nutapinia as weel right now so she is inside a lot.
Again thanks for your help and we hope you continue to stay well and envey postive attitude.