Spleen Forum - autoimmune hemolytic anemia

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Q: autoimmune hemolytic anemia

asked by: BarbieHarshie on January 24th, 2008

New User

7 weeks ago I was diagnosed with autoimmune hemolytic anemia. I am an other wise healthy 37 year old female. And until a 7 weeks ago I had never heard of AIHA!!! I spent 9 days in the hospital and needless to say I was scared to death!!!!!!
MY hemoglobin was at 4.4 when I got to the hospital, and I was in need of a transfusion but the anitbodies in my blood were'nt allowing me to get one, and I was started on Prednasone 100mg a day. The Dr's wanted to remove my spleen the 2nd day, but my concern was the I didnt have any blood and they could'nt give me any and what if I bleed during surgery. His answer was " we will just make sure that doesnt happen". That wasnt good enough for me, so I refused surgery. I KNEW that if I had surgery that day I was going to die.
Well its 7 weeks later, and my immune system is still completely out of wack, my hemoglobin in back to 10, I still have a positive Coombs test, and now my platelets are getting high. My am on 60 mg of Prednasone. The Dr is again talking about removing my spleen.
Does anyone have any information on experiecne with this and cane give me some advice?
Im worried about my spleen being removed because I get sick quite a bit, I get broncitius a least twice a year. And I dont want to be on antibioitics all the time.
Thank you

Replies(8)

jgillock

replied on July 24th, 2008

New User

autoimmune hemolytic anemia

Barbie, my daughter also has AHA. She is scheduled this Monday to have her spleen removed, but we are not sure we will just yet. Heather has other complications as well. She has Hepatitis C and Portal Hyper Tension. She is 32 years old. She has been treated with Prednisone and other steroids and has been give IVIGG (Immune Gamma Globulin by IV)...and countless blood transfusions. Her type O- can be matched but her antibodies are hard to match so her transfusions are not always compatible or helpful. It is getting worse for her. She has had to have transfusions almost every 2 weeks.
We are opting to try homeopathic remedies...such as Hemotab or Biofeed-back. You might want to look into such things for yourself. Good luck and may God bless you!

rogersjm2

replied on August 13th, 2008

New User

In Remission from Warm Antibody Hemolytic Anemia

Rituxan saved my life. I tried everything to cure my warm antibody hemolytic anemia and nothing worked. The Dr. treated me with Rituxan and I've been in remission for almost 18 months now. Don't get your spleen removed it didn't help. Rituxan is the way to go (four treatments one week apart). Way better than prendizone, Danizol and all the other drugs. I feel great now!

hope39

replied on November 15th, 2008

New User

remission

rogersjm2

can i ask you which country you are based in? are you in england?

My local hospital has already told me that they will not fund rituximab for idiopathic auto immune haemolytoc anaemia saying the product is not licensed for it, even though i have seen research saying it is effective treatment and that appears to be your experience

i would appreciate feed back from other people in the uk who have managed to secure treatment with rituximab

thank you i hope you are all well

Users who thank hope39 for this post: rogersjm2

magsteps

replied on February 3rd, 2009

New User

RE: hemotab

I would like to know your results with this treatment. i have been looking for the clinical trial informtion for several months and it still isn't on the site, despite the "coming soon" notation Thanks, magsteps

tamkat

replied on March 12th, 2009

New User

AIHA

Have had autoimmune hemolytic anemia for two years. Predisone did not work, in high doses it had an adverse effect on my mind, very depressed. Been on Rituximab every three months for a year and half. Not working for me, so now I will have my spleen removed. Every doctor I saw ultimately suggested removing my spleen since that is where the destruction is taking place. Try Rituximab if you can, then go for the surgery.

kenko

replied on March 15th, 2009

New User

AIHA and Hemotab

I have AIHA. I've asked for the test results from hemotab for several months. Their site says coming soon. Would you please share your results with hemotab. Thanks

funkyred

replied on April 3rd, 2009

New User

AIHA and pregnancy

I am currently 6 months into my treatment for AIHA, and also 14 weeks pregnant. So far the baby seems to be doing well and growing normally but I am worried about how my illness and 20mg of prednisone every other day will affect my baby. I also wonder if it would be worth it to store my baby's cord blood?

racewidow

replied on April 12th, 2009

New User

Spleen removal

My husband had AIHA 10 years ago and was treated with Immunogloblin and Predisone for 10 months. His red blood count went up to 15 but his platlets dropped to 2000. They finally said that removing his spleen was the answer. He was weened off the Predisone and his spleen removed in October of 1999. At that time the Dr. said that there was only a 20 percent chance that the anemia would return. After the first 6 months after his surgery he was released from the doctor and was not seen by the Oncologist again. The anemia did return after 10 years. Besure that you are seen by your Oncologist yearly after your spleen is removed. After a 10 year period the Dr. office doesn't have your records and it is an ordeal trying to get those records pulled out of storage.

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