Stopping mast cell attacks with medication, and when you need to use epi

We take a lot of medication.  It’s not comforting that when you look up the maximum recommended doses, we are often taking more than that on a daily basis.   I think we are all scared of taking too many meds and accidentally overdosing.  It’s an understandable concern.  The reality is that most of the antihistamines we take are very, very safe medications that show little adverse effect even at several times the recommended maximum dosages.  It’s not as easy to overdose on antihistamines as you might think. 

Obviously, everyone is different, but I thought I would share my experiences.

Regarding antihistamines/mast cell stabilizers/leukotriene inhibitors, I take the following every day:

Loratadine 10mg, 3-4 times a day

Ranitidine 300mg, 2-3 times a day

Aspirin 325mg daily

Cromolyn 200mg 4 times daily

Doxepin 20mg daily

Ketotifen 1mg 2 times a day (just started)

Montelukast 10mg daily

I take other medications, but these are the ones that specifically interact with mast cells or mast cell released mediators.  With the exception of pain medication, none of my other medications suppress respiration in any serious way.  But I am very careful with pain medication, so let’s assume for the purpose of this conversation that none of my other meds suppress respiration.

If for any reason I am feeling unusual (by which I mean different from baseline, but without obvious pre-anaphylaxis symptoms), I take 10mg Claritin.

If I feel stressed out, I take 10mg Claritin. 

If I have any ONE of the following: sudden nausea; sudden severe abdominal pain; flushing; full body warmth; swelling (usually happens in my lips/mouth); or dizziness, I immediately take 50mg of oral Benadryl (liquid preferred) and 150mg ranitidine. 

I find that once I have got more than one of those symptoms I listed above, taking a lot of antihistamines can quell it for a short time, but it always comes back.  Epinephrine is the only thing that actually stops the reaction instead of delaying. 

Anything beyond that is generally anaphylaxis, so I use my Epipen.  (Please refer to my previous post for specific guidelines on when to use your Epipen.) 

I was recently in the hospital for several days and had repeat anaphylaxis.  I was given 120mg of IV solu-medrol, 50mg IV Benadryl and 40mg IV Pepcid immediately upon arrival.  Afterward, I was given 50mg of IV Benadryl (roughly equivalent to 200mg oral Benadryl) every 4 hours and 40mg IV Pepcid every 6 hours ON TOP OF my daily medications. 

As always, speak with your treating physician regarding appropriate doses for you.  But, as you can see, very high doses of antihistamines are often used in people with mast cell disease.

I have talked before about how to know when you need your Epipen.  The fact of the matter is, it’s not always easy to know.  I have heard doctors say, “If you need to use it, you’ll know,” but that’s not always true, especially for people with mast cell disease.  They say this because for people with food allergies or bee stings, it is often easier.

Epipens were primarily designed for people with allergies to food or bee stings.   For these people, when you start to feel symptoms, there is also a corroborating event.  They know they just ate something and now they’re not feeling well, or whatever.  It makes it easier to know that you need epinephrine. 

For mast cell patients, you need a system.  Refer to my previous post on what constitutes anaphylaxis.  Make a list and put it somewhere so you can refer to during anaphylaxis if necessary.  Tell everyone close to you at what point you need to use your Epipen.  Ask your mast cell specialist when exactly you should use your Epipen if you are still unsure.  Keep in mind that how anaphylaxis presents may change for you.   

It’s normal to be scared by this stuff.  It’s scary.  I wrote posts about it, have experience in health care, and it’s still scary for me.  Just don’t let your fear be your undoing.  Anaphylaxis can kill you.  Epinephrine will stop it.   

Keep calm and masto on.