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.

 

[wabi-sabi]

Does anyone who is clued up about medications, or who has taken it, have any comments on

I take this as a treatment for MCAS. It's one of many potential treatments for MCAS. Whether you would need antihistamines and xolair (or other medications too at the same time) to treat MCAS is very individual, as far as I can tell. I certainly need both since my MCAS is on the severe side. I've found that treating the MCAS has made the ME/CFS better. Mast cells release hundreds (or more?) of mediators and antihistamines only block one of those-histamine. Xolair binds to the mast cells in such a way as to make them less reactive over all, so that means less of everything that mast cells release.


After Lipkin's new paper on innate immune activation, I wonder if much of ME/CFS is MCAS.

 

[BrokenBeaktheBrave]

After Lipkin's new paper on innate immune activation, I wonder if much of ME/CFS is MCAS.

There's quite a few of us that don't have MCAS at all.

 

[wabi-sabi]

There's quite a few of us that don't have MCAS at all.

I didn't know I had MCAS for the first 9 years of MCAS. There doesn't seem to be the depth of MCAS knowledge in the ME/CFS community that there is about ME/CFS itself. I do wonder/think if we got together more there would be some useful knowledge exchange.

 

[Jonathan Edwards]

What exactly do you mean by MCAS @wabi-sabi ? Some say it is a rare genetic disorder, others say 17% of the population have it. We all have mast cell activation at times. I cannot work out what it is supposed to be.

 

[BrokenBeaktheBrave]

I didn't know I had MCAS for the first 9 years of MCAS. There doesn't seem to be the depth of MCAS knowledge in the ME/CFS community that there is about ME/CFS itself. I do wonder/think if we got together more there would be some useful knowledge exchange.

I think it depends entirely on what MECFS communities one is part of. I'm part of several online communities and MCAS and POTS are talked about as much as MECFS - mostly because if MCAS is present it appears that needs to be managed first due to it affecting what one can eat and/or tolerate. I do think there's a lot of people with POTS that aren't aware of it. I spent 5 years not realising my breathlessness, dizziness and anxiety was due to POTS and entirely controlled with electrolytes and b12.

 

[wabi-sabi]

What exactly do you mean by MCAS

What my immunologist tells me... That's not a particularly satisfying answer, I know. He hasn't explained the pathophysiology part. I know he gave me this diagnosis and that the drugs he tells me are mast cell stabilizers as well as xolair make my symptoms better.

We all have mast cell activation at times.

I seem to have it too often and to inappropriate stimuli that should not make a mast cell activate.

 

[wabi-sabi]

I cannot work out what it is supposed to be.

A lot of the stuff online is quite garbagy and nonsensical. So I go by what my doctor says and what the Bateman Horne says.

I seem to remember Dr. Rowe mentioning it in his Living Well with Orthostatic Intolerance, probably in the case study session, although I can't lay hands on my copy just now.

 

[Braganca]

Xolair works by acting on IgE to prevent allergic inflammation. Not sure why it needs to be described as MCAS instead of allergy?

 

[wabi-sabi]

mostly because if MCAS is present it appears that needs to be managed first

This has certainly been the case for me! Mast cell stabilizers and xolair have helped my orthostatic intolerance a bit more than the typical POTS medications and electrolytes.

Xolair works by acting on IgE to prevent allergic inflammation. Not sure why it needs to be described as MCAS instead of allergy?

I don't think it's MCAS instead of allergic inflammation. Xolair treats both, as well as asthma and hives. And even nasal polyps!

 

[Trish]

This is the European Medicines Agency information on Xolair
https://www.ema.europa.eu/en/medicines/human/EPAR/xolair#authorisation-details

Overview

Xolair is used to improve the control of severe persistent asthma caused by an allergy. It is used as an add-on to asthma treatment in patients from 6 years of age when an antibody called immunoglobulin E (IgE) causes the asthma. Xolair must only be used in patients who:

• have had a positive skin test result for an allergy caused by an allergen (a stimulus that causes an allergy) in the air, such as house dust mites, pollen or mould;
• have frequent symptoms during the day or waking up during the night;
• have had many severe asthma attacks (that require rescue treatment with other medicines) despite treatment with high doses of inhaled corticosteroids plus a long-acting inhaled beta2 agonist.

In patients aged 12 years or over, Xolair must only be used if the lung function is less than 80% of normal.

Xolair is also used to treat:

• chronic (long-term) spontaneous urticaria (itchy rash). It is used as an add-on to existing treatment in patients aged 12 years or over in whom treatment with an antihistamine does not work well enough;
• severe chronic rhinosinusitis with nasal polyps (inflamed lining of the nose and sinuses with swellings in the nose) in adults. It is used with a corticosteroid given into the nose when the corticosteroid alone does not work well enough.

I don't see any mention of MCAS.