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Osteoporosis meds and mast cell activation syndrome

Posted by fionakatt @fionakatt, Feb 16 12:15pm

I have mast cell activation syndrome and my metabolic bone doctor at Hospital for Special Surgery in NYC wants me to take Evenity and Tymlos to prepare for an eventual lumbar spinal fusion and laminectomy. The prospect of these surgeries is terrifying to me, but so is starting these meds.

I never know what I will react to with the mast cell activation syndrome. I do ok with certain drugs, not so well with others, and am downright allergic to others. I carry an epipen because I just never know what will 'get me', depending upon how inflamed I am at any given time.

Does anyone here know if these two drugs, or any of the other osteoporosis meds cause mast cell degranulation?

Does anyone here have mast cell activation syndrome and/or histamine intolerance, and have any personal experience with these drugs?

While my doctor at HSS is supposedly the best of the best, he knows nothing about MCAS. Most doctors don't as mast cell activation syndrome was only just classified in 2014.

Thank you.

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gently | @gently | Feb 16 4:46pm

Evenity contains polysorbate 20 as an inactive ingrediant. The polysorbates have the potential to excite mast cell activation. I haven't any suspicions about Tymlos, though some people cannot tolerate the medication. Some are allergic to the preservative. Forteo avoids the preservative. I don't know enough to actually answer the question.

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flowers62 | @flowers62 | Feb 17 6:36am

Hello. I also have MCAS and have struggled immensely with all drugs since my diagnosis in 2023. My endocrinologist at HSS in NYC is Jessica Starr. She was actually the doctor who suspected that I might have MCAS and sent me to my current immunologist Jennifer Toh in NYC to have me tested for it.

Dr. Starr at HSS is suggesting that I take Reclast infusions, but I am terrified of them because the drug stays in you for a long time. I have had anaphylaxis twice on other medications and don't want to get a medication that might cause me serious problems. I would rather try Forteo or Tymlos since they leave the body more quickly.

Please keep in touch and let me know what you decide to do and how the medications affect you. With MCAS medications are such a challenge. Good luck to you!

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