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.
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!
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!
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
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
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.
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?
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.
i am south african i have AHA for the past 17 years. i''ve been for several transfusions and have been on prednisone treatment. My doctors have suggested several times for me to have my spleen removed but i''m too afraid. Now there is no alternative. If anyone has had their spleen removed recently, can you please share your experience and advice?
Hello. I live in the UK and have had AIHA for the last 8 years. I had a five year gap between the first 'bout' and then a three year gap between my last 'bout' which was this August. I have been on 70mgs prednisolone coming down gradually over 18months to 2years. I have been unable to find out much at all about this condition, my medics seem to know very little about it! It would be lovely to talk to someone else in the UK with this condition to find out how you feel and how you cope with it. I am no great shakes on the computer, so hope this will find its way onto the forum!
Just wondered where in uk you are? My husband has AIHA, we are in Derbyshire. He has been on Prednislon, Aizathiprin Plus many others. Dr now talking about removing his speen. This is his 3rd bout of AIHA. We are very worried, we don't know anybody who has been through this and it would be helpful to talk.
My husband had his spleen removed 3 years ago. So far he is in remission and is doing well. He sees the hemotologist for blood tests every 6 months, and while he still tests positive warm coombs, he seems to be ok
I have had 5 bouts of autoimmune haemolytic anaemia over the past 18 months. Treatment with prednisolone has always worked for a while, but the illness has always returned 9-14 weeks after completing the course of prednisolone. OI am now being advised to try Rituximab.
I have history of AIHA pretty severe. I have had several relapses, one with 5.2 hg (so sick). I wish I would have tried rituximab before the removal of the spleen (I didn't know it existed) but I experienced it in the reverse order. My spleen was 3 times it's normal size when it was removed, they never did a ct scan to see if it was inlarged before the surgery! I think there is a chance of it bursting when it is enlarged. I began to have relapses again one year after splenectomy. 7 years on and off prednisone (mostly on), but ever since a serious plead to God and rituximab about the same time I have not had any anemia (10 years). I was however recently diagnosed with lupus which is apparently a risk factor for those with AIHA. When I was sick I remember trying to find someone I could talk to that had AIHA but never could. If you have found this on the web and need someone to talk to I would be glad to just email me...
My son was diagnosed with AIHA when he was 1 year old. he was on Predason for 3 years and received Chemotherapy 2 times. the first one was Immuran which was really effective and his Coomb Test was negative for a while but reducing the Predason sharply affect this result and the Coomb went positive again. The second one was Rituxan and this one really helped in maintaining a good blood level and also getting off Predason.
He was a having fever constantly but after we give him Pumpkin-seed tablet (3 times daily) for about a month the fever is gone and his bladder is without any problem. More importantly his enlarged spleen reduced its size. but his Coomb test is still positive.
I am really happy about this result and hope one day he will be cured completely. I wish you all a good health and recovery from this illness.
I've recently been diagnosed with AIHA and have been in hospital for 2 weeks. My HB was down at 3.4 on admission. The steroids did not work for me so my Dr has put me on rituximab which seems to be having an effect. I'm due to take my 3rd treatment tomorrow. Its taken me a while to pluck up the courige to look up AIHA and I too was supprised at the little informtion available. I would be very happy to hear from anyone who is or has been going throught the same thing. I am a 36 year old female who up until 1 month ago was fit and well.
Hi...I am a 35 yr old female who was also healthy up until last august when i was diagnosed w AIHA. It has been an emotional roller coaster for me! I initially had two blood transfusions and was put on a high dose of prednisone. They took me off quickly and all my numbers dropped. I did ritixum...it didnt help. I am now coming off steroids again....doing well until I hit 7.5 mg and once again my levels r dropping. I am soooo frustrated! We r now talking spleen removal. I'm so scared! I just want something to work! I want to know how people r emotionally getting through this. It's been awful! Thanks
I was diagnosed with AIHA in the Summer of 2006 at the age of 45. So ill initially, with hemo of 4, given last rites, but recovered after 3 pints of blood. On Pred for 10 months and stabilized, but gained 50 lbs-just horrible. THen found a wonderful hematologist-you need someone with experience treating rare blood disorders, NOT an oncologist/hematologist that just treats people with cancer. AIHA is NOT cancer!! In Spring 2007 I was put on Danazol, high dose initially but now only 100 mg a day-no Pred since 2007, and not any relapses, etc. I am back to my old self, able to run 5 miles a day, and back at my normal weight. Just through the use of Danazol. DON'T LET THEM TAKE YOUR SPLEEN-odds are you will eventually relapse (most people do within 5 years) and have a host of other problems as a result!! If Danazol hadn't worked for me, I would've done Rituxan-it is far more likely to help than taking out an organ that you are meant to have-the spleen fights infection!! Good luck everyone, AIHA is a total pain-hard to treat, and no fun to live with.
I have a had aha all my life I'm now 34 after refusing to allow them to take my spleen for years in march 2008 I finally agreed as I'd had enough of steroids and nothing else was working, now I wish I hadn't. Since the op I've suffered fatigue, pain and been diagnosed with ME and fibromyalgia not things I had before then last week I found out aha is back too, I've been fighting so hard and this news has broken me at the moment. I looked loads before spleen op and could find little info on success rates I knew I'd kept fighting it for a reason but it was a pressurised last resort in the end. I'm now back on the steroids and got to reassess what life holds for me.
I have just been diagnosed with AIHA at the end of Febuary 2013. In March of 2012 I was diagnosed with Ulcerative Colitis. Anyone else out there living with both? Just curious to see what treatment worked or didn't work in controlling the colitis and anemia. Thanks
I was admitted to hospital in 2009 with a HB of 50 . In 2008 I got a TBI in an auto accident and was prescribed several drugs to treat the TBI . One month after the accident all my blood levels were normal ie; HB 140 etc. I stopped taking all of the prescribed head injury drugs upon being diagnosed with AIHA but now it's 2013 and the warm hemolytic anemia persists . I was given prednisone in large doses for a couple years and then that coupled with folic acid and Imuran . In early 2013 I had one month (once per week) IV of rituximab and my HB is now at 94 . I am now taking 100mg of Imuran and 5mg of folic acid per day and I am off the prednisone . I still have my spleen but that option of removal was mentioned . I believe the rituximab did me some good . Has anyone else had a similar experience ? For the readers , Optimism is a good medicine so think positive ... CK