Waiting For Successful Treatment

I was diagnosed with Warm Auto Immune Hemolytic Anemia in November 2010. I have been taking Prednisone at various amounts since then. At high doses, my hemoglobin level rises. However, the side effects are terrible - weight gain, swollen face and neck, as well as mental confusion. In October 2011 I underwent four infusions of Rituximab. This had no effect. I continue to take Prednisone. For the last three or four months, I have been taking Cyclophosphamide. This is a chemotherapy drug. My hemoglobin level has only risen to 10. Other than suffering hair loss, the Cyclophosphamide has not really had any effect on me. My hemotologist has now recommended that I have a splenectomy and I will be meeting with a surgeon next week. My doctor tells me that removel of the spleen works 2/3rds of the time. I am not feeling good about this as I feel it is a last resort. Given my record so far, I will probably be in the 1/3 where the surgery will not help me. I'm not sure what my remaining options will be if that happens. I plan to see another hemotologist and get a second opinion. This whole situation has been very frustrating for me. I have been tested for many other diseases to see if this is a secondary symptom but all results have come back negative. This is my story so far. I'm praying for a positive ending. Thank you.
slo459 slo459
51-55, F
3 Responses Jan 5, 2013

I have started a Facebook group where we can all chat about what we've been through and we can talk about the different treatments that we have all had.

https://m.facebook.com/groups/1399908783560795?ref=bookmark&__user=791265514

Please join its great to chat about AIHA I have leant so much from the people I've met so far.

slo459, I am so sorry for what you are going through. I would really like to hear how you are doing now, 3 mos later. Did you get the splenectomy? How are you feeling? I also have AIHA and will be doing the Rituxan in the near future. Doctor said it was just a matter of time when my hgb goes down. Best wishes

I had rotuxin and in November 2012, spleen removed proved worse. I would say wait on the spleen and get ALL NATURAL NUTRIENTS built up BEFORE SURGERY, and afterward....like me, pray and try to keep body alkalin , naturally....MY PROBLEM is that I am on Warfarin, and "bloodthinner", but THAT is destroying my liver....IF ONLY I had known to get on natural regimen for helping the blood not to clot, the liver would not have been so damaged. FORTIFY yourself with calcium and D3 to prevent bone loss, especially if on prednisone, steroids, and b COMPLEX vitamin, with zinc and folic acid. IF you can find a natural healing doctor...get detoxified. In my case, and in others I have read about environmental poisons in house cleaners/yard products...and even truckers having their food radiated for prolonged stops in the radiation sheds at the borders have gotten this type of anemia. If severe, one MUST get to doctor for transfusions, etc. However, before removing the spleen...get the other body systems/organs up to optimal operation...BEFORE going further, it wll help you to withstand and recover from whatever they do to you...I HOPE YOUR STORY works out perfectly. Blessings