Mast Cell Activation

Hello, in April I took levofloxacin due to an infection and have ended up with neuropathy issues, muscle pain, popping joints and so much pain in my neck and spine, and muscle spasms. I couldn’t walk for a month or 2 more than 2-3 minutes. I’m currently seeing a neurologist but it takes months just to get testing done, and not even getting any results. I’ve had hives before this for about 2-3 years now, before any of this happened. On my face all over my body. But after taking the levofloxacin my hives have gotten so bad to the point where I’m scratching myself raw. I’ve had a hive the size of my entire hand. I can’t use the shampoo I’ve used for years and I can only use dove hypoallergenic body wash as my shampoo. If I don’t my feet itch for days on end waking me up out of my sleep. The hives look way different than what I had before just non stop welts even if I don’t scratch them covering my hand down to my elbow. I’ve also had my eyelid being swollen for days-weeks sometimes then going away and I’ve been to multiple eye doctors and they have no clue what causes it. I now have reactions to any medication I take. I can’t even take medications I’ve taken before without having an adverse side effect to it. Even taking ibuprofen for neck pain gives me non stop relentless migraines. Some I can handle, but I’m even scared to take an antibiotic even if I’m sick. I always feel fatigue and out of breathe. I just found out I’m anemic and have low b-12 but these were never issues I’ve had before all of this. I never told my neurologist about the hives cause I never thought it could correlate with any of my neuropathy issues but I was told by a friend I should try to research this, and it said mcas can affect your nerves too. All I knew before was I was allergic to latex and band aids but after I’m seemingly becoming allergic to a lot of medications even ones I’ve taken before. Is this something worth bringing up to my neurologist? I’m not sure a lot about this issue but I’m at a total loss and
I’ve been so uncomfortable and in pain for months without any knowledge of what’s happening to me.

Hi @unicorn44 You sound absolutely miserable with the side effects resulting from levofloxacin! That’s awful and I’m so sorry that happened to you. The hives and allergic responses do sound similar to what other members report with mast cell activation syndrome.

Mast cells act as first responders in our body help protect our bodies body from infection. But they can also be triggered by allergens or what they perceive as a threat to the body. When triggered, mast cells release chemicals that cause symptoms such as hives as the most obvious. But here are other side effects as well.

To help you understand a little more about Mast Cell Activation Syndrome, here are several articles to act as a primer for you. They may give you ideas of where to seek help and also what questions to ask.

~From Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/systemic-mastocytosis/symptoms-causes/syc-20352859

~From Cleveland Clinic: https://my.clevelandclinic.org/health/diseases/mast-cell-activation-syndrome

An article I found from EDS Clinic really presented the information well. I don’t know anything about this clinic, but their information correlates with other credible sources to give an overall explanation for Mast Cell Activation and types of treatments.
https://www.eds.clinic/articles/treatment-of-mast-cell-disease
If you haven’t already, I’d suggest seeing an allergist. This would fall under their expertise. There has been some help for people with MCAS using a dual approach of taking a 2nd generation H1 (histamine blocker) such as Claritin or Zyrtec in combination with an H2 (histamine blocker) such as Tagamet or Pepcid (yes, the antacid meds) Together they calm the system. But this should be done under the supervision of an allergist. From my understanding it can be trial and error to get the right dosages. But if it helps…it would be worth a try!
Have you seen an allergist?

@loribmt thank you so much for the response and the links you have provided!
I haven't seen an allergist, but I did see a dermatologist 2-3 years ago when my hives had spread to all over my face and got a steroid cream. She said to come back if it didn’t go away, but I had chalked it up to being due to stress and never went back. I have had hives the whole span of that time, but they have definitely gotten much worse so I will definitely look into seeing an allergist. I will at least make a mention of it to my neurologist to see if it’s possible taking the levofloxacin could’ve flared it if I supposedly had it. But regardless I’ll look into an allergist thank you so much for all the information.

@unicorn44 -

It sounds like your symptoms are truly unpleasant. There is a lot of controversy about MCAS diagnosis and there are two main schools of thought on this topic. While it hasn’t been updated in several years, the best website for understanding the disease and the diagnostic controversy can be found at https://www.mastattack.org/. The information presented there is thorough, balanced and technically accurate.

In 2019 the AAAAI and other mainstream societies endorsed a set of diagnostic criteria (commonly referred to as Consensus 1 criteria) which includes “typical clinical signs of severe, recurrent, acute systemic MCA are present (especially in
the form of clinical features and ndings of anaphylaxis).” (“Proposed Diagnostic Algorithm for Patients with Suspected Mast Cell Activation Syndrome”, Valent, et.al., Journal of Allergy and Clinical Immunology- In Practice, April 2019) This means that if your symptoms are not severe enough to require a trip to the emergency room, there is a low probability that you will satisfy the criteria that is currently accepted by a majority of mainstream practitioners.

The main problem with the Akin/Valent (Consensus 1) criteria is that they exclude patients with mild or moderate systemic symptoms and significantly underdiagnose the disease. The Consensus 1 authors freely admit that mast cell activation, like anaphylaxis, exists across a spectrum of severity but consider the mild and moderate forms to be ‘clinically insignificant.’ They do not offer any references or experimental evidence for this conclusion.

Most of those with moderate or mild MCAS symptoms seek out doctors that base their diagnosis and treatment on the alternative, Afrin/Molderings (Consensus 2) criteria. (I agree with @loribmt’s allergist recommendation and would suggest that your risk of gaslighting will be significantly reduced if you refrain from mentioning MCAS. If the allergist is unable to help and you are interested in investigating the possibility of MCAS, I would find someone in your area (most probably a functional medicine practitioner) who bases his diagnosis and treatment decisions on the Consensus 2 criteria.

There also a very active Reddit thread that discusses MCAS issues. It can be found at https://www.reddit.com/r/MCAS/.