Skip Navigation

Autoimmune Hemolytic Anemia

Hi, I'm Sharon C.

Has anyone here dealt with autoimmune Hemolytic Anemia? I would love to hear any information you have learned that has helped with this

  • Post #1
  • Wed Jul 17, 2019
Hi, I'm KELLY A V.

I am not familiar with any one else with this rare blood disorder as this diagnosis is new to me and I finally have a name for my symptoms. I am a 53 year old female, I have hypothyroidism and have been now diagnosed with Autoimmune Hemolytic Anemia or AIHA.

I have had 4 episodes of Autoimmune Hemolytic Anemia at different times of each year over the last 4 years where my hemoglobin drops and goes low. I am not able to pin point the reason why this happens when it does, I can tell when I am anemic based on my symptoms and I am very active with exercise and raring right.

The most current episode was the worst one. It happened about 4 weeks ago where my hemoglobin plummeted to 6.6 and I had to have a stat blood transfusion that day. My hemoglobin numbers over the last 3 weeks went from 9.3 to 8.5 to 8.2 while being on steroids. I am hoping that the steroids will eventually work and boost my hemoglobin. If not, the next step will be IV medications.

I’m not sure if you will find this helpful but I was happy to see someone else with this diagnosis. I haven’t learned anything specific about this rare blood disorder other than it is autoimmune and there is no way to treat is proactively. You have to treat the symptoms when you have an episode.

  • Post #2
  • Tue Nov 19, 2019
I'm EDWARD A L., and I'm a survivor of Acute Lymphoblastic Leukemia

I have AIHA and my Hemoglobin goes down to 6.4 and if I’m lower then 8.0 I get red cell transfusion about every 3-4 weeks

  • Post #3
  • Tue Dec 17, 2019
I'm EDWARD A L., and I'm a survivor of Acute Lymphoblastic Leukemia

I have AIHA and I get Packed red blood cells every two weeks for the last 3 years whenever my count goes below 8 which is mostly all the time and the steroids don’t help.

  • Post #4
  • Wed Mar 11, 2020
Hi, I'm Coco

I have AIHA aka Cold Agglutinin Disease ~ I’ve had blood transfusions over the yrs & more recently Rituxan. I’m allergic to high doses of steroids therefore I don’t take them. I’ve been living w/this since 2005, best advice, don’t put anything cold into your body (ice water/etc) keep warm, stay out of cold weather & if you go out dressed layered & bundled!

  • Post #5
  • Wed Jun 3, 2020
Hi, I'm MiSooner

I have CAD and ITP (low platelets). I currently receive Promacta for ITP which isn’t working. My hematologist wants to try Rituxan but I would prefer nPlate because it was able to increase my platelets to 50 from 9. Since taking Promata my platelets are in 20’s and low 30’s. They tell me there is no effective treatment for CAD so I’m only being treated for the ITP.

  • Post #6
  • Wed Jul 22, 2020
Hi, I'm Marc C C.

Recently rushed to Aria – Torresdale with a hemoglobin of 3.0 and falling hospitalized in excess of 30 days and rec’d 25 give or take units of blood. Upon intervening in my case Dr. Chasky determined that because of the number of transfusions and vast number of antibodies involved with so many transfusions my blood was “battling” itself. He worked up the proper antibody “mix” working with the Red Cross to stop my blood from in essence fighting itself with each transfusion and is presently working on the appropriate Prednisone and folic acid dosing to stabilize my count(s). Things are becoming more stable and predictable. I’m extremely fortunate, some would say lucky, to have had Dr. Chasky and his “team” on my case. Thank You !

  • Post #7
  • Tue Sep 22, 2020
Hi I'm Josie.

This is not cancer is it.

  • Post #8
  • Thu Mar 4, 2021
Hi I'm Josie.

I went down to 7.7 and they put me on Prednisone 60 mg for 2 months then they gave me a pint of blood. I was doing good on the prednisone.I went back and my blood test came up to a 10.then I went back next 2 weeks and my blood fell back down to an eighth so they put me on that Rixtian now going on my 3rd treatment. My body can’t make up its mind what it wants to do this is one mystery disease that nobody can find out what it is.
I look like a fat balloon my face is so fat a swollen from the prednisone I’m so ashamed to even go outside the public.

  • Post #9
  • Thu Mar 4, 2021
Hi, I'm Ashley T

I have aHUS (atypical hemolytic uremic syndrome). I was diagnosed April 14, 2016 after being admitted to the hospital from the ER. Honestly, I thought I had a stomach bug or the flu when my flare up came on. But after spending 4 days at home in my bed & not getting any better but instead worse with each day that passed, I finally called my mother & basically asked her to “fix” me. She rushed me to the ER while I was kinda bouncing in & out of consciousness, aching from head to toe, talking about crazy, off-the-wall, irrelevant stuff & struggling to breathe. The ER doctor said I was in complete kidney failure, my RBCs & platelets were extremely low & my WBCs were incredibly high. She said I was severely anemic with bp so high that it was considered to be at stroke level. She also said I needed immediate & aggressive treatment that consisted of blood transfusions, plasmapheresis & dialysis. Otherwise, I probably wouldn’t live to see another day. She couldn’t believe how well I was able to fully comprehend & communicate. She said I really should’ve been unconscious, in a coma or even dead. She also added that if I had waited another 24 hours before seeking medical attention that there’s ABSOLUTELY NO DOUBT about it, I wouldn’t have walked thru her double doors but instead I would’ve been wheeled thru them in a body bag. This was the scariest moment of my entire life! Needless-to-say, my aHUS Journey was only just beginning & I had no clue what I was up against!

The life I had been living would be no more. Instead, I would have a new life: new me, new responsibilities, new worries, new fears, new friends, new hobbies, new restrictions, new guidelines, new mental problems, new social life, new looks that people would give me, NEW EVERYTHING except for my name & my body. And to be quite honest….THE NEW ME & MY NEW LIFE SUCKS!! This has prob been the hardest challenge for me since my diagnosis. I think I’ve been thru every stage of grief a few times (plus maybe even a few new stages that I might have invented). I’ve contemplated suicide, asked God why he had to let me live & even begged for him to take me out of this world. I’ve felt unhappy, insufficient, inadequate, guilty, empty, hateful, worthless, unmotivated, lethargic, angry, lonely, out of place, unwanted, misunderstood, lost, dark & etc. However, on the flip side, I’ve felt determined, grateful, thankful, blessed, loved, strong, brave, empathy, sympathy, supported, valued, unstoppable, respected, inspired, happy, relieved & etc. Everyday is a constant battle with my physical & mental health but at the end of the day, I’m actually forever grateful that God found me to be deserving enough for a 2nd shot in life. Without it, I would’ve missed so much in my son’s life (& that’s what broke me most of all). So despite my daily struggles over the past 5 years, I’m slowly making progress & THAT is what matters!

“What doesn’t kill u makes u stronger” (& oneday, I might just be one of the strongest people alive)!

  • Post #10
  • Wed Jul 7, 2021

Add to Discussion

Sign in or Join (free) to add to this discussion. Add to this discussion