Friday, February 24, 2017

150,000+ Mg of Benadryl: Continuous Diphenhydramine Update

Continuous IV Benadryl?! That thought is preposterous to most. It was to me too. However, for patients with severe Mast Cell Disease, like myself, it is a reality. While the basics of Life on a Continuous Benadryl Pump remain the same, much has changed since I began the pump September of 2015. Over 150,000 mg of Benadryl has been continuously pumped into my veins over a year later.

The continuous Benadryl pump vastly differs from regular intravenous bolus dosing of 25 to 50 mg every 4 to 6 hours. It is literally continuous! A pump administers medication up to 15 mg an hour, infusing little amounts at a time that eventually add up to the programmed hourly rate.


Check out the post, Diphenhydra-what? The Continuous Benadryl Infusion, for an introduction of why continuous Diphenhydramine (Benadryl) is used as a Mast Cell Disease treatment, how the pump is started, what symptoms it initially helped with, and the beginning experience that molded my outlook 150,000 mg of Diphenhydramine (Benadryl) later! 

"What is your rate?"

My rate of the pump has fluctuated depending on my med regimen. I began at 7 mg an hour, increasing half a milligram every few days until I reached a dose I felt significant improvements at. Others increase a full milligram after a few hours, but I felt strange heart arrhythmia when it was done that quickly. My body is more sensitive than the average. 

The highest rate I have ever been on is 12.5 mg an hour. Currently, I receive 11 mg of Diphenhydramine (Benadryl) an hour. Bolus doses of 5 mg are permitted a few times a day if needed. 

"What symptoms does it still help with?"

The continuous pump is better at decreasing severity symptoms, rather than eliminating them all together. The areas I have noticed significant improvements with are:

Neurological
  • Tremors
  • Partial Seizures
  • Stroke like Episodes
  • Visual Disturbances: floaters, flashing lights, etc. 
  • Dystonia
Cardiac
  • Tachycardia
  • Arrhythmia
  • High Blood Pressure
  • Low Blood Pressure
  • Syncope / Presyncope
  • Chest Pain
Gastrointestinal
  • Nausea
  • Diarrhea 
  • Intestinal Pain 
  • GERD 
Pulmonary
  • Cough
Other
  • Itching
  • Flushing 
  • Major Swelling
  • Bone Pain
  • Burning all-over Pain
In my experience, the continuous pump is most helpful at stopping repeated cycles of anaphylaxis induced by my main trigger (nutrition: food, TPN, J tube feedings). It has allowed me to manage J tube feeds. But I still go into severe reactions with oral intake. I even react to water! 

The symptoms it helps are dependent on what mediators mast cells are releasing. Mast cells release over 200+ mediators, or chemicals that can cause symptoms. Diphenhydramine (Benadryl) only blocks the mediator called histamine. This is why Mast Cell Disease patients stay so sick. It is also the reasoning I rarely do bolus emergency doses. The Diphenhydramine (Benadryl) I already have infusing is usually sufficient at preventing any symptoms deriving from histamine release. The remainder of symptoms are from other mediators, like prostaglandins, leukotrienes, or cytokines that Diphenhydramine (Benadryl) does not block. 

"Are there symptoms it has stopped helping?" 

There are not necessarily symptoms that it once helped and no longer do. Symptoms naturally wax and wane. 

"Are there symptoms it has never helped?" 
  • Blood Sugar Spikes/Crashes
  • Skin Spots
  • Pancreatitis 
  • Fatigue 
  • Neuropathy 
  • Gastroparesis
  • Autonomia Dysfunction
  • Joint Stiffness
"Are there side effects?"

Long term repercussions of continuous Diphenhydramine (Benadryl) are unknown. It is a risk taken if its benefits outweigh the damage of uncontrolled Mast Cell Disease on the body. 

With that being said, I experience less effects from the continuous pump than from regular dosing of 50 mg every four hours. Less medication is taken via the continuous pump. Drowsiness and the general loopy feeling is a huge problem for me with normal Diphenhydramine (Benadryl) dosing, but neither occur with the continuous pump. 

"How long do your doctors suspect you will be on the pump?" 

The idea of the continuous Diphenhydramine (Benadryl) infusion is to stabilize and reduce flares during the process of trialling other treatments. My doctors did not intend to have me on the pump longer than three months. We expected that another medication would have worked. After a year and a half, that has not been the case. Until then, I remain on continuous Diphenhydramine (Benadryl) indefinitely. 

"Have you tried to wean off or have you developed a dependency?"

I have tried to wean off of the continuous pump in the past. I have been successful at decreasing my overall dose. 

Unfortunately, ceasing the pump completely has been unsuccessful. The problem I have encountered is that when the pump is stopped, even if unsymptomatic during the 30 minute to an hour duration, I have rebound reactions when it is finally restarted. 

Instead of lengthier breaks, I have been shutting the pump off in five minute increments to allow my body to adjust to life off of the continuous Diphenhydramine (Benadryl) infusion. My hope is to become stable enough to require regular dosing or as needed! It is in God's hands. 

"Has you body ever rejected the pump?"

There are occasions when my mast cells become extra finicky and attack whatever is infusing during the onset of a major reaction. When that occurs, I actually react to the Diphenhydramine (Benadryl) and other infusions, like saline, steroids, etc. Of course, this is problematic when I cannot pause the continuous Diphenhydramine (Benadryl) without suffering the consequences explained above. My body has never outright rejected the continuous pump, just temporarily. 

It was a total surprise when my Mast Cell Disease progressed, leaving no choice except to begin a last resort treatment that is relatively new and that very few before me have trialled. The concept of continuous intravenous Diphenhydramine (Benadryl) may seem absurd and it is definitely not ideal, but it has kept me alive.