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Real members of myAIHAteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
98 questions
I'm Lost
A myAIHAteam Member asked a question 💭

Guys i'm lost. I have my appointment with the haematologist after the blood test. Everything started to improve DHL is better, bilirrubin as well, hemoglobin now is 10, b12 also improving since I'm gettint treatment. Levels of iron has dropped a lot, from 87 to 8. Levels of folic acid have dropped as well. The thing is they say I have no aiha, and the diagnosis is: pernicious anemia. Which is caused by an antibody that attacks the parietal cells of the stomach, they're necessary to metabolise… read more

A myAIHAteam Member

No
I only got the camera down my mouth and they even gave me pics of tests. This Atrophic gastritis. What is it exactly? Cause i feel all the pills we are taking, that’s what is making me nauseous… read more

posted April 16
What Supplements Do You Recommend Please
A myAIHAteam Member asked a question 💭

Hi my husband was diagnosed September 2022 on his second round of Rituximab what supplements do you advice please he is currently on vitamin D and calcium

A myAIHAteam Member

i mean, we cant just take vitamins by ourselves because it can cause sickness. i took iron once by myself and i felt like throwing up because it was too much for me and once i took one multivitamin by… read more

posted February 26
My Hb Went Down Today At Blood Work From 9.9 To 9.5 And I Am Just Worried. Is This Concerning?
A myAIHAteam Member asked a question 💭
A myAIHAteam Member

You need your hematologist or experienced Doctor to evaluate. I assume you are talking his Hemoglobin? The doc looks at the whole picture in the CBC, CMC, etc and also the meds he is taking.... Like… read more

posted February 24
For How Long Have You Been Living With AIHA?
A myAIHAteam Member asked a question 💭
A myAIHAteam Member

Wow Bia, such an experience. I hope you're a little better now. I'm not still on treatment, and my Hb is 8 last time they checked. I went today to visit another doctor for a second opinion and she… read more

posted February 21
AIHA Diagnosed, Not On Treatment Yet. I Need Some Answers From People Who Has Been Through This.
A myAIHAteam Member asked a question 💭

Hello everyone. I've just been diagnosed with AIHA. I also have b12 deficit, which it seems is not linked. I'm already on treatment with b12. My haematologist sent me to get a tomography done. Already done. Still I won't see her until 11th March. I have extensive blood test on the 7th. Lots of autoantobodies, serology, tumoral markers and so. The tomography shows spleen enlarged and cervical adenopathy. Everything I read it says treatment for AIHA must be instaured immediately. I was diagnosed… read more

A myAIHAteam Member

☺️

posted February 19
AIHA And PVC (Premature Ventricular Contraction) Activity
A myAIHAteam Member asked a question 💭

Does anyone have experience or data on how AIHA may generate or cause Premature Ventricular Contraction (PVC)? My % rate of PVCs has climbed up between 9% and 15%.

A myAIHAteam Member

Hi. I don’t know this.

posted March 2
Is Anyone Here Aware Of The Initial Cause/reason Of The Onset Of Your AIHA?
A myAIHAteam Member asked a question 💭
A myAIHAteam Member

Vietnam Chemical Exposures, but VA does not admit.

posted February 16
Haptoglobin Levels
A myAIHAteam Member asked a question 💭

I had 4 doses of Rituximab 6 months ago. Now my blood work still shows decreased haptoglobin levels. Was/is anyone experiencing something similar? How long did it take for your haptoglobin to reach normal levels? Just so worried that this is a sign of ongoing hemolysis…

A myAIHAteam Member

Hi my husband had Rituximab a year ago have been only off steriods fir 3 months last year now back on steriods and Rituximab again tough journey

posted February 23
What Lessons From Your AIHA Experience Are You Applying In 2024?
A myAIHAteam Member asked a question 💭
A myAIHAteam Member

Walk frequently in that day in an AIHA episode even if it s only 50m. Listen to your body and work with your GP or specialist and do not be afraid to ask questions about how to live with the… read more

posted 4 days ago
How Does The Cold Affect Your AIHA?
A myAIHAteam Member asked a question 💭
A myAIHAteam Member

That was an interesting take on environmental temperatures and associated reactions to AIHA
My daughter told me that she ran into an article on the Internet that indicated extreme temperature changes… read more

posted January 30
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