Xolair (omalizumab) comments (and relation to any proposed mechanisms of m.e.)

[Samuel]

as a very rough tldr, for anybody wondering, of my very rough and probably wrong understanding of it, it works via a rituximab-like mechanism, except against ige. it also affects basophils and mast cells.
it is used for allergy-like / histamine-like conditions. even nasal polyps.

side-effects include clotting [perhaps because mast cells release heparin? idk]. apparently being bedridden is also a risk for clotting, and compression stockings are recommended. others are also mentioned, but apparently a couple of debunked side effects are on the label.


question 1: does anybody have any comments on this medicine? in general, or for very severe m.e., or for extremely severe m.e., or for angioedema, either histaminergic or not, or for a highly allergic or mold injury presentation, or for an mcas-like presentation [tryptase being -.]?

well-known, theoretical, practical, speculative, personal experience, anecdotal, all are ok. looking for any comments you might have.


mast cells can release lots of stuff, so perhaps it is useful for anything related to them also? e.g. if il-8 and il-6 are high, could it reduce them and if so would that potentially have any effect on m.e.? one il-6 or il-8 reducer was considered for m.e. once.


also i have heard recently only the briefest indication that the innate immune system is being investigated, a shunt or + feedback state?

so my question 2 includes, do you have any comments on whether this medicine could affect, negatively or positively, future or studied treatments, by e.g. changing the innate immune system state or something similar?


question 3 is, would it at least theoretically be good or bad while administered while a moldie is further mold-injured?


question 4 is, 2nd-generation antihistamines cetirizine and fexofenadine can help sleep. could this med in principle act to promote sleep, in addition to potentially obviating the need for antihistamines' anti-allergy / mast cell properties?

 

[Lou B Lou]

as a very rough tldr, for anybody wondering, of my very rough and probably wrong understanding of it, it works via a rituximab-like mechanism, except against ige. it also affects basophils and mast cells.
it is used for allergy-like / histamine-like conditions. even nasal polyps.

side-effects include clotting [perhaps because mast cells release heparin? idk]. apparently being bedridden is also a risk for clotting, and compression stockings are recommended. others are also mentioned, but apparently a couple of debunked side effects are on the label.


question 1: does anybody have any comments on this medicine? in general, or for very severe m.e., or for extremely severe m.e., or for angioedema, either histaminergic or not, or for a highly allergic or mold injury presentation, or for an mcas-like presentation [tryptase being -.]?

well-known, theoretical, practical, speculative, personal experience, anecdotal, all are ok. looking for any comments you might have.


mast cells can release lots of stuff, so perhaps it is useful for anything related to them also? e.g. if il-8 and il-6 are high, could it reduce them and if so would that potentially have any effect on m.e.? one il-6 or il-8 reducer was considered for m.e. once.


also i have heard recently only the briefest indication that the innate immune system is being investigated, a shunt or + feedback state?

so my question 2 includes, do you have any comments on whether this medicine could affect, negatively or positively, future or studied treatments, by e.g. changing the innate immune system state or something similar?


question 3 is, would it at least theoretically be good or bad while administered while a moldie is further mold-injured?


question 4 is, 2nd-generation antihistamines cetirizine and fexofenadine can help sleep. could this med in principle act to promote sleep, in addition to potentially obviating the need for antihistamines' anti-allergy / mast cell properties?

I am wondering too. Does anyone who is clued up about medications, or who has taken it, have any comments on
Xolair (Omalizumab)
.

 

[Braganca]

Omalizumab suppresses IgE so i have always thought for patients who have high IgE and allergic symptoms to food it would be worth trying. My sister took it for asthma for a year and then switched to Nucala which is prescribed for eosiniphillic asthma and other diseases. I took Nucala too for 4 months as I have high eosinophils and as an experiment to see if it did anything for my ME — it didn’t.

I have a friend w severe ME and severe food intolerances who just started Dupilimab (anti IL4 and IL13). Am very interested to see if he improves in his ability to eat or if it improves his ME. There are two reports on Reddit CFS forum saying Duplilimab helped or completely resolved someone’s ME.

 

[Verity]

I have a friend w severe ME and severe food intolerances who just started Dupilimab (anti IL4 and IL13). Am very interested to see if he improves in his ability to eat or if it improves his ME. There are two reports on Reddit CFS forum saying Duplilimab helped or completely resolved someone’s ME.

If you wouldn’t mind, I’d appreciate an update on your friend if they do improve. I saw those same accounts about dupilimab and am curious.

 

[Lou B Lou]

Thank you for that @Braganca . I was interested because I've just been diagnosed with Bullous Pemphigoid (Autoimmune, itching skin and blisters, horrible) and Omalizumab is a medication that can used when the steroid treatments don't work.
Groan - ME for 30 years, COPD 10 years and now my own body is attacking my skin.

 

[Braganca]

Thank you for that @Braganca . I was interested because I've just been diagnosed with Bullous Pemphigoid (Autoimmune, itching skin and blisters, horrible) and Omalizumab is a medication that can used when the steroid treatments don't work.
Groan - ME for 30 years, COPD 10 years and now my own body is attacking my skin.

I’m so sorry.. my mother had excruciating blisters for 18 months on her feet, they looked almost like she’s been badly burned. She couldn’t walk or wear shoes. They looked like bullous pemphigoid but on testing were not, they were filled with eosinophils. She also has asthma so we managed to get her on Nucala — officially for her asthma— but we were really gaming the health system as it wasn’t approved for this unnamed blister condition. It worked after several months — blisters slowly decreased and went away. We think the blisters were triggered by Covid vaccine as came soon after one and it’s been reported. Anyway, I hope omalizumab works for you, and sorry to hear you have this.

 

[Lou B Lou]

I’m so sorry.. my mother had excruciating blisters for 18 months on her feet, they looked almost like she’s been badly burned. She couldn’t walk or wear shoes. They looked like bullous pemphigoid but on testing were not, they were filled with eosinophils. She also has asthma so we managed to get her on Nucala — officially for her asthma— but we were really gaming the health system as it wasn’t approved for this unnamed blister condition. It worked after several months — blisters slowly decreased and went away. We think the blisters were triggered by Covid vaccine as came soon after one and it’s been reported. Anyway, I hope omalizumab works for you, and sorry to hear you have this.

Oh your poor mother. The blisters are horrible, so painful. I just had some on one foot but they have subsided. Clever you with the Nucala. And it worked!
I am not on Omalizumab, but was checking it out just in case. Am on Prednisolone, high dose, and steroid cream, also Doxycycline. Just starting.