u/Altruistic-Physics37

Hi everyone, I was looking more into Xolair to treat my MCAS as it has been suggested by my doctors, but I’m concerned I may have some kind of hypersensitivity or allergy to PEGs, polysorbates and possibly poloxamers.

I had a pretty significant reaction to the Moderna vaccine and my MCAS symptoms became much worse afterward. I also reacted badly to MiraLAX and I generally do not tolerate most medications well. I’ve had issues with almost all antibiotics, liquid Benadryl, allergy pills, tretinoin, Pepcid, omeprazole, and I had a pretty severe reaction to dapsone as well.

I react to most personal care products like shampoos, conditioners, soap, makeup, lotions, sunscreen and skincare products. I’ve also noticed I often react to processed foods containing these types of emulsifiers like coffee creamers and ice cream.

I’m currently on compounded ketotifen and can’t really stop taking it, which has made allergy testing somewhat difficult and inconclusive since it interfered with my results when I attempted testing a few months ago.

I know Xolair contains polysorbate 20, so I’m nervous about whether I could tolerate it. Has anyone here with suspected PEG/polysorbate sensitivity or excipient issues still been able to tolerate Xolair? Or vice versa if you did not tolerate xolair do you suspect a polysorbate sensitivity or react to other medications?

I’m trying to figure out whether this is a viable option for me or if it isn’t worth the risk given my medical history. Thanks everyone.

For context, this is not just some random acquaintance. Our families are extremely close, her mom is my godmother and my mom is hers. We grew up together. She’s (29f) I’m (30f) and our moms have been best friends for over 50 years. This family friend has struggled a lot throughout her life with addiction, recovery and mental health issues such as BPD, and my mom and I have always tried to support her through everything and have cheered her on. When emergencies happened, we were often the first people called.

So I have Ehlers-Danlos syndrome, POTS, and MCAS and have dealt with these chronic illnesses since I was a teenager. Recently things have become pretty scary with my health, I was basically unable to eat real food for almost two months, I currently weigh around 70 pounds, and there is a very real possibility that if my health does not improve things could become life threatening as I am running out of medical options. Most people in my life genuinely have no idea how severe my health issues are because I rarely talk about them due to how heavily stigmatized these illnesses are and how poorly I’ve been treated in the past when I did.

Recently there have been a lot of viral TikToks mocking chronically ill women, especially women with EDS/POTS, basically implying they are faking or exaggerating illnesses for attention. I was already upset by the trend in general because these stereotypes genuinely affect how chronically ill people are treated by doctors, family, schools, and employers. It’s all kind of surreal that people are debating whether illnesses like mine are real while I’m struggling just to stay alive.

Then this family friend reposted one of these videos making fun of my illnesses, which was kind of the last straw for me. I decided I really couldn’t continue supporting someone like that. I know a lot of people might see that as just a video and just a joke, but I think there are moments where certain behaviors cross a line and permanently change how you view a person and this was one of those lines for me. I really don’t think she intended to hurt me or was trying to personally target me with that repost because I honestly don’t think she even connected that these are the conditions I have. At the same time that also makes it kind of sadder? Like regardless of the intent, it still hurts seeing someone I’ve supported for so long contribute to harmful stereotypes about chronically ill women and treat it as a joke, especially when I know she knows firsthand what it feels like to be stigmatized and misunderstood with her own struggles with her mental health and addiction. At that point, I quietly unfollowed her and kind of realized I probably would not be able to continue having her in my life moving forward.

After this, I ended up channeling a lot of my emotions into writing a personal essay about my experiences growing up with these chronic illnesses. I did not write this as an attack on her or anything and she was not mentioned, it was really me just trying to process everything I was feeling and sharing my perspective and trying to bring awareness to everything. I’ve actually submitted it to a few publications because I think conversations like this are important to have.

Unfortunately, the situation escalated when my mom sent the essay to my godmother and her daughter without asking me first. The friend immediately assumed it was a personal attack without actually reading it and denied ever reposting videos like that at all, insisting she would never post content criticizing people with POTS or EDS. Because of that, my godmother asked me for screenshots of the original repost, and when I went to find it I saw that she had already started reposting more ableist videos along with other vague passive aggressive videos about “victim complexes,” “accountability,” “people being too sensitive,” etc. I had already unfollowed her before any of this happened, so I honestly wouldn’t have even seen any of the newer reposts otherwise. I haven’t really engaged because I honestly don’t see the point in escalating things further.

My godmother read the essay and agreed with my perspective, and said it was very eye-opening and sent a very thoughtful message. At the end my godmother explained that her daughter struggles heavily with BPD and other mental health issues, and that situations involving shame, conflict, or unintentionally hurting someone can be extremely difficult for her to process emotionally and conflict like this can destabilize her mentally. I know I could have probably communicated this entire situation better, but at the same time all the reasons her mother laid out were exactly why I felt I could not actually address things in a healthy or constructive way in the first place.

I’m genuinely trying to be understanding because I know she struggles with this, and I also understand what it’s like to deal with mental health challenges myself. But I think part of what has become exhausting for me and at a certain point I also have to prioritize my own physical and mental health instead of endlessly absorbing situations that are emotionally draining and harmful towards me.

At the same time, I am feeling very conflicted about how much drama and tension this has caused between our families. I feel really bad and don’t want this situation to strain our mother’s 50+ years of friendship over something as minor as a reposted video to damage their relationship even though I think this was all much bigger to me than just social media drama. I’m also sad knowing this will probably irrevocably damage my relationship with my godmother, who I love very much. So now I’m left wondering whether I overreacted and should have just let it go and if it was really worth reacting and losing all these longstanding relationships.

TL;DR: A close family friend reposted TikToks mocking women with EDS/POTS and implying they fake illnesses for attention, not realizing I have those exact illnesses. I quietly distanced myself and wrote a personal essay to process my feelings. My mom sent it to her and her family without asking me and the situation escalated, she denied reposting the videos and started reposting passive aggressive videos, and now I’m wondering if I overreacted by distancing myself over what was technically “just a reposted video.”

I feel like l've been responsible for making sure my mom gets gifts for birthdays, holidays, and Mother's Day since I was around 10 years old. Every year, I pick gifts out, buy them, wrap them, and put my dad and older brother's names on them too out of courtesy.

Mainly because I don't want my mom to feel bad because I know it would make her sad knowing how little they thought of her and considered her, but also because I don't want them to feel bad or for the situation to create drama on holidays.

Sometimes I ask them to just write me a check or Venmo me their share but they rarely do. I guess after all these years I'm just fed up and tired of their selfishness. My mom does so much for both of them, especially my brother, and meanwhile he spends huge amounts of money on himself constantly. At this point it's just genuinely upsetting, and I'm resentful that they don't think of her at all and are incapable of showing any appreciation.

The final straw today was watching my brother excitedly open two expensive collectibles he bought himself in front of my mom. These collectibles cost thousands of dollars, and he still couldn't put any thought into Mother's Day. I’m so tired of this.

Now I'm just annoyed and debating leaving their names off the card/tag entirely and just signing my own name since I'm the one actually doing all the work and paying for it, but I feel guilty because I know I'm just mainly hurting my moms feelings. But another part of me feels like l've been covering for their selfishness for years and enabling it.

AITAH if I leave off their names?