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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.

Has anyone here had any experience with Mycophenolate Mofetil, (MFA), an immunosuppressive drug, in treating warm AIHA?

A myAIHAteam Member asked a question 💭
Kuching, Malaysia

In April, 2026, my haematologist returned from the congress in Moscow, Russian Federation
There, new recommendations for treatment of AIHA were established.
She discussed with colleagues my history and treatment protocol since February of 2022, using Prednisolone as the primary component. It was suggested that long term use of Prednisolone has potential for adverse reactions.

My new treatment regime begins with the modest dosage of a 500 Mg. tablet/day of MFA, (a 2-morpholinoethyl ester… read more

May 19
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A myAIHAteam Member

No, I have not had a splenectomy, nor has my haematologist ever suggested I consider one.
I began taking MFA on 11 May 2026 at 500 Mg./day, so it’s really too early to evaluate efficacy in my case.

However, I took my most recent blood draw on 26 May and I’m expecting the results any time now. Over the last several months, my HGB has been slowly declining and 6 weeks ago, it was 10.6, so I’m anxious to see any change at this early stage of my new MFA treatment regime. I will advise on myAIHAteam.

In the meantime, I recently received an informative response from Nekdo Nekje on this website with regard to his use of MFA that you may want to consider reading if you already haven’t done so.

May 26
myAIHAteam

What a thorough and well-managed treatment plan — it's clear your haematologist is being very thoughtful about your long-term care!

Mycophenolate mofetil (MMF) is indeed a recognized immunosuppressive option for warm AIHA, particularly in cases where long-term corticosteroid use raises concerns. It works by reducing the Show Full Answer

What a thorough and well-managed treatment plan — it's clear your haematologist is being very thoughtful about your long-term care!

Mycophenolate mofetil (MMF) is indeed a recognized immunosuppressive option for warm AIHA, particularly in cases where long-term corticosteroid use raises concerns. It works by reducing the activity of immune cells that produce the harmful autoantibodies attacking your red blood cells. MMF is typically used in situations like yours — when corticosteroids like prednisolone have been the backbone of treatment but need to be tapered due to long-term risk. It's considered an off-label treatment for AIHA, meaning it wasn't originally FDA-approved specifically for this condition, but it is a well-known option in the AIHA treatment toolkit.

Your plan of gradually reducing prednisolone while introducing MMF and monitoring monthly blood work is a sensible, cautious approach. A few things worth keeping in mind as you transition:

- Infection risk may increase as your immune system becomes more suppressed
- Digestive side effects (nausea, stomach upset) are among the more common complaints with MMF
- Blood count monitoring is essential, as MMF can occasionally affect white blood cell levels
- Folic acid supplementation, which you're already taking, is a helpful supportive measure for maintaining blood levels While there isn't a large pool of shared member experiences specifically about MMF to draw from here, other myAIHAteam members have navigated similar transitions away from long-term prednisolone and understand the balancing act involved.

As always, keeping that open dialogue with your haematologist — especially with monthly monitoring — is the best way to catch any responses or reactions early. You're in good hands!

May 19
A myAIHAteam Member

Very grateful for all the feedback on your experiences. High dose steroids followed by Retuximab had little effect on my blood picture. Mycophenelate has brought my haemoglobin back to nearly normal though I am still haemolysing. Like Bia, I believe that the steroids have left with muscle weakness and arthralgia. Glad to hear that mycophenelate can work in the longer term.

May 26
A myAIHAteam Member

Thanks for your input on this! I’ve made a note. It was interesting and informative and suggests what I might expect from MFA from today moving forward.
4 1/2 years seems like a substantial length of time for any AIHA single treatment, so your comment is both impressive and encouraging.

Years ago, I had ordered and paid for an air delivery of Retuximab, based on an option my haematologist suggested but she later indicated it wasn’t necessary and I continued with Prednisolone which I have been taking for over 4 years at low dosages.

I’ll post on this website my experience with MFA after I accumulate reliable information on its efficacy.
Thanks again for your post and very best wishes!

May 21
A myAIHAteam Member

I use it for little more than 5y, standard dose for WAIHA. 1g morning and 1g evening.

For me it was ok for 4,5y. Than I needed restart with rituximab, and now I am back on MMF.

For now no adverse effects.

And as I researched, they are not so common for 2g dosing per day. But they become common at 3g daily, that is used for organ transplant cases.

May 21 (edited)

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