what is paroxysmal nocturnal hemoglobinuria and autoimmune hemolytic anemia | myAIHAteam
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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

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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

Which Blood Test Tells Us That It Is This AIHA?
A myAIHAteam Member asked a question 💭

When we know that we have anemia, but we don't know which type....which blood test tells us that it is this AIHA?
My Mom and I are both anemic. Hers is due to autoimmune disease inflammation.
I don't yet know why I am anemic.

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A myAIHAteam Member

The blood test that confirms AIHA is the Coombs test. A hematoligist will know that.

What Is A Common Treatment Protocol For Someone With Mixed AIHA?
A myAIHAteam Member asked a question 💭

I have recently learned that I have cold autoimmune hemolytic anemia as well as warm AIHA. Does treatment differ? I have been treated with prednisone, rituximab and am currently taking Azathioprine immunosuppressant. I would like to hear from anyone with a similar diagnosis. No end to the adventure🙈

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A myAIHAteam Member

I also am of the mixed up variety diagnose Jan 2023. 3 months on varying levels of steroids followed with 4 rituxin infusions one week apart. Last labs all was normal except for cold agglutinin level… read more

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

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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

My Question For The Team: Has Anyone Here Had Any Actual Experience As A Recipient Of Rituximab Intravenous Infusion?
A myAIHAteam Member asked a question 💭

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

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A myAIHAteam Member

Not a cure (if you learn of one, let us know!), but more than a bandaid/temporary fix in our experience. Prednisone (at least at higher doses and definitely long term), has notable immediate as well… read more

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

Anyone Have Aiha That Came On Suddenly
A myAIHAteam Member asked a question 💭

It came on suddenly over the course of 2 days heamoglobin dropped from 8 to 5 to 3.9 . Along with severe jaundice... obviously emergency admittance into hospital and several tests done.. nothing conculsive yet over 10 transfusions done and they are helping elevate levels up to a 6 or 7... what have your experiences been ? How long were your stays ? Treatments found or causes if any ?

Any thing that could shed alight would be greatly appreciated

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A myAIHAteam Member

I had Jaundice too as not only is Hemoglobin low,but it may be damaged Folate is stored in Hemoglobin,so take it daily with your Docs help.Your DNA is affected and you are VERY sick and at risk for… read more

What Can Increase Your Hemoglobin Levels And Energy If The Food Doesn't After Two And Half Months Doesn’t ?
A myAIHAteam Member asked a question 💭

I amHemolytic anemia , have fluid build up around the lungs ,on antibiotics and have blockage of oxygen from the heart and 2.5 months of no energy . What would you suggest ?

What Causes AIHA? Read Article...
A myAIHAteam Member

so sorry to hear you are so unwell, I am trying Manuka honey in warm skimmed milk for energy plus have been increasing my exercise daily - mainly walking a bit more each day. Hope something helps you

Exercise And WAIHA. Had Myopathy From Steroid After 3 Episodes In 2 Years. Advice For Starting Exercise After An Episode. When Is It Safe?
A myAIHAteam Member asked a question 💭
Has Anyone Here Tried Naturopathic Medicine To Control And/or Cure AIHA?
A myAIHAteam Member asked a question 💭

I have now logged about 14 months of traditional, allopathic treatment since my initial diagnosis of AIHA in February, 2022
The result has been favourable in that I progressed from a haemoglobin level of around 5.0 to close to 12, with major fluctuations in between, then and now
To be honest, I went from transfusions, Prednisolone to Metapred, to tapering off of all drugs completely last August and then back to transfusions last October and finally back to Prednisolone, all in the past 14… read more

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A myAIHAteam Member

So over time prednisolone can cause serious side effects because it is a steroid. So moon face, low levels of hormones, and destruction of antibodies and the immune system are the main issues. If your… read more