Mast Activation Syndrome and Osteoporosis

I had double mastectomies in 2015 and bone loss from aromatase inhibitors (did you do an AI?). I have a lupus diagnosis and very high anti-centromere antibodies (scleroderma) but basically a wonky immune system. I am sensitive to everything: scents, paint, new rugs, medications, foods. My diet is somewhat limited. But this predated cancer and I believe it started with Lyme treatment in 2001. I am also very EMF sensitive after an electric shock that sent me to the hospital.

Mast cell activation is an interesting idea. Three docs think I have eospinophilic esophagitis.

I got lobar pneumonia with fever of 104 from oil paint being applied in the vestibule of my house, and another pneumonia from a few moments with a new carpet. A housemate's cologne sent me to the ER with vertigo and continuous vomiting. People don't understand that it isn't that I "don't like smells"!

Are you getting any treatment or have you found anything that helps? And for your bones, are you taking medications? That is challenging for people like us. I did Tymlos because I could start very low and work up. I am now doing Evenity and struggling with effects. For cancer I did brand name letrozole after reacting to every generic for every AI. I do well with TEVA meds. I am sensitive to almost every med for pain which is unfortunate!

Wow. I had Lyme misdiagnosed for decades, which I expect started my whole downward spiral. I was a little allergic to fragrance before the cancer treatments. But it is really bad now.

I took tamoxifen. It was supposed to help build bone. I had breast cancer again and had the mastectomies and chemotherapy.

Did you have reconstruction with implants? Chemotherapy?

I recently went to the ER for pain in my chest. They think it was an esophageal spasm. It was not cardiac.

In the catscan they first thought I had pneumonia then changed it to emphysema. I doubt it is that. I think it is something related to MCAS.

Yes, people do not get the fragrance allergy. It is not that I do not like fragrance, it is that potentially I get anaphylaxis from fragrance.

I just started Evenity and the first injections did not give me a reaction.

For the scent allergies (MCAS) I take generic Zyrtek 2 tabs daily and a generic Claritin. My allergy Dr hasn't done much to help me and I fired him. He has fragranced soap, hand sanitizer, and nurses in his "fragrance free" office. I live not extremely far from Brigham and Women's Hospital in Boston and I have read they have an MCAS department there. I want to go there and see what they can do to help.

There is a MCAS Facebook group. Someone suggested Cromolyn. It is a nasal spray you can get on Amazon. I ordered it to see if it helps.

I am afraid that this MCAS with all the cytokines is wrecking havoc on my bones and other systems. And I AM scared. I am falling apart. My husband is surprised because I am a vegetarian and take good care of myself. It just doesn't make sense.

I also am allergic to everything that outgases: rugs, cars, stores that gave plastics, my church's new addition...we are very much alike. Sorry, because I know how much it sucks:(

I am apartment hunting and it is very difficult.

I have a house and with no AC and in the summer mold grows on the furniture. It's neverending cleaning. I can imagine how tough it is to find an apartment. Good luck. I hope you find one that suits you.