Autoimmune MCAS

[Blake2e]

Does anyone here have autoimmune MCAS? I'm exploring every major possible mechanism of mast cell activation. I'm trying to decide if I should also test for autoimmunity IgE-receptor Antibody (Anti-IgE-receptor IgG).

If you have it can you describe your triggers (foods, UV, exercise or whatever they happen to be) and your symptoms and what you do to manage it?

 

[Gingergrrl]

I think there is still a lot of debate whether MCAS is considered an autoimmune disease vs. some other mechanism. I was curious @Blake2e, do your doctors consider it to be autoimmune? I am not familiar with the Anti-IgE autoantibody and if you did test positive for it, how would it change your treatment plan?

I'm clearly no use with answering your questions... but figured I'd add a few more questions into the mix

 

[Hope4]

Hi, Blake. The list at Dr. Jill Carnahan's site might be of help.

I don't know how similar hives are to having autoimmune MCAS.

The list at Dr. Carnahan's site for triggers for MCAS, and what to do, look similar to how to deal with hives.

I am on the RPAH Elimination diet (I've posted about that a few times here on the forums), and I take antihistamines. Heat, stress, and pressure on the areas of skin which flare up can also triggers hives outbreaks.

 

[Blake2e]

I think there is still a lot of debate whether MCAS is considered an autoimmune disease vs. some other mechanism. I was curious @Blake2e, do your doctors consider it to be autoimmune? I am not familiar with the Anti-IgE autoantibody and if you did test positive for it, how would it change your treatment plan?

I'm clearly no use with answering your questions... but figured I'd add a few more questions into the mix

If one has IgG towards IgE receptors on mast cells then yes. If elevated IgE then an allergic disease. I'm not entirely sure how to classify inappropriate mast cell activation via other mechanism such as by T cells and cytokines. My main Immunologist does not consuder mine to be autoimmune b/c we so far have no found any autoantibodies.

If I did test positive for anti-IgE -receptor antibodies I would pursue drugs that suppress the humoral immune system with more confidence. Insurance may also cover more drugs. Though since Im on Rituxan and getting it at no cost already it wouldnt be too different.

What Im most curious about someone having this autoantibody (and low IgE) is if they experience symptoms constantly or if they have triggers. I've seen some cases where a patient would have both the autoantibody and elevated IgE so it may be a possibility for me. I just dont have a clear understanding of how anti-IgE -receptor antibody mediated mast cell activation would clinically present itself.

Hi, Blake. The list at Dr. Jill Carnahan's site might be of help.

I don't know how similar hives are to having autoimmune MCAS.

The list at Dr. Carnahan's site for triggers for MCAS, and what to do, look similar to how to deal with hives.

I am on the RPAH Elimination diet (I've posted about that a few times here on the forums), and I take antihistamines. Heat, stress, and pressure on the areas of skin which flare up can also triggers hives outbreaks.

She doesnt mention anything specifically about autoimmune MCAS, no mechanisms. Just how to diagnose and treat with little background of causes, thoough it is still a great article just not what Im asking about.

 

[Gingergrrl]

The list at Dr. Jill Carnahan's site might be of help.

I hadn't seen that site before (that I remember ) and thank you for sharing it. Another excellent website/ resource is "Mast Attack" and Lisa Klimas. She has a private FB group as well with lots of info.