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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.
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How Do You Thank Your Family And Friends For Their Support?

How Do You Thank Your Family And Friends For Their Support?

posted 7 days ago
A myAIHAteam Member

I thank them for putting things into a positive perspective when I can't. Rooting me on to be my own advocate. Thanking them for accepting me for who I am and not what I have. It's been a rough… read more

posted 7 days ago

Association Of AIHA With Solar Urticaria

Association Of AIHA With Solar Urticaria

Yesterday, a dermatologist told me I have “solar urticaria”, an immediate but temporary adverse skin reaction from exposure to direct sunlight.

Has anyone here had any experience with solar urticaria?

posted November 4
A myAIHAteam Member

I didn’t either until yesterday
I met with a dermatologist yesterday, (down the hall from my haematologist), and she told me I’m the first case for that condition that she has seen this year.

Direct… read more

posted November 5

What Experience Have Members Here Had With The Use Of Oral Prednisolone?

What Experience Have Members Here Had With The Use Of Oral Prednisolone?

How long have you been taking oral Prednisolone and at what dosage, Mg./day?
What does your schedule of decreasing dosage look like over time?
And what results have you achieved with the Prednisolone in terms of haemoglobin levels and overall wellness?
Any side effects?

posted November 4
A myAIHAteam Member

Wow! That’s encouraging news! I mean, about the new doctor who advised that you could be weaned off the Prednisolone completely and it actually came to fruition for two years now! 😃👍
For me… read more

posted November 7

What Lifestyle Changes Have You Made Since Becoming Diagnosed?

What Lifestyle Changes Have You Made Since Becoming Diagnosed?

posted October 31
A myAIHAteam Member

I don't know where to. I'm always in bed in pain. I have had to rethink my future because I can not make it through 1 regular 8hr shift anymore. I'm single mother of 4 so that's a stressor on top… read more

posted 2 days ago

My Question For The Team: Has Anyone Here Had Any Actual Experience As A Recipient Of Rituximab Intravenous Infusion?

My Question For The Team: Has Anyone Here Had Any Actual Experience As A Recipient Of Rituximab Intravenous Infusion?

Last Spring and Summer, I was taking oral Prednisolone and later, due to that drug’s side effects, oral Medipred, (an analog of Prednisolone.)

In June, my haematologist suggested that I order Rituximab in the possible future event I suffer a relapse.
I did and I had it on hand in the refrigerator, 4 ampules, under a controlled temperature range of 02 to 08 degrees C.

As you know, Rituximab is a very serious drug given intravenously and only under strict, medical supervision
I was very… read more

posted October 28
A myAIHAteam Member

Yes, individual differences, not only with the same patient/other patients in response to treatment but also with the haematologist in their opinions
For example, my first haematologist told me last… read more

posted November 7 (edited)

What Advice Do You Have For Others About Managing Fatigue?

What Advice Do You Have For Others About Managing Fatigue?

posted October 24
A myAIHAteam Member

I understand the dynamics of participation in daily activities. A day’s overload can generate physical and psychological stress.
Fatigue would be a manifestation of that.

posted October 24

What Aspect Of AIHA Worries You The Most?

What Aspect Of AIHA Worries You The Most?

posted October 21
A myAIHAteam Member

Interesting. 🤔. ….. My Chinese Malaysian haematologist is a senior member of the haematology staff at the hospital
He was highly recommended by a friend of mine here in Kuching. My friend… read more

posted October 24

What’s One Thing You Wish People Who Aren’t Living With AIHA Could Understand?

What’s One Thing You Wish People Who Aren’t Living With AIHA Could Understand?

posted October 10
A myAIHAteam Member

They need to understand that we aren't being lazy when we can't do the things we used to. Like go up steps, walking right after eating and need to rest durning the day
We aren't as able to go all day… read more

posted October 10

What Is Your Morning Routine?

What Is Your Morning Routine?

posted October 3
A myAIHAteam Member

Has anyone gone back to their jobs in person.?

posted October 4
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