I get frequent consult requests from patients specifically around the use of IV fluids to treat mast cell disease. I am often asked to provide references for papers that show its use and benefit. I am not able to provide any such references because there are none. There has been no organized study for the use of intravenous fluids to manage symptoms from mast cell disease.
Despite this fact, use of intravenous fluids in mast cell disease is increasing in popularity, largely because it works, and word of effective treatments travels fast in a rare disease community. While there is no firm answer for why it helps, there is a reasonable explanation: it treats both deconditioning and POTS and many mast cell patients have one or both. I wrote a seven part series on why exactly intravenous fluids help in these situations. I have also written in great detail about the way that mast cell disease and POTS interact.
A paper published in early 2017 reestablished the finding that use of intravenous fluids helps POTS. Treatment lengths and infusion volumes varied from person to person. Despite these variations, use of IV fluids decreased symptoms and improved quality of life for POTS patients. The link to the abstract is here.
Many mast cell mediators are vasoactive, affecting the permeability of blood vessels. This means that mast cell activation causes third spacing, the loss of fluid from the bloodstream to the tissues, where the body cannot use it. This functional dehydration can cause a lot of symptoms, not the least of which is exhaustion and difficulty standing or exercising. For obvious reasons, this will be further exacerbated in a patient that is deconditioning or who has also has POTS.
Orthostatic symptoms can be very activating to patients and managing them effectively can help significantly. I have seen IV fluids work where more traditional methods like drinking lots of fluids and consuming lots of salt, or medications like fludrocortisone have not helped. Additionally, the first line tools for managing POTS, beta blockers, are contraindicated in patients at increased risk for anaphylaxis and therefore in people with mast cell disease.
I am a fervent supporter of IV fluids (also called volume loading) in the context of mast cell disease. I have seen it stabilize patients and reduce the frequency of anaphylaxis and severe symptoms, especially orthostatic symptoms and GI symptoms.
I personally use IV fluids. If I don’t receive IV fluids at least three times a week, my orthostatic symptoms become so severe that it is difficult to stand or even move. This in turn triggers mast cell reactions. The benefits of IV fluids to my personal health are significant. Many patients report the same.
While I support the use of IV fluids in the context of mast cell disease, patients should be aware that there are infection risks associated with repeated IV access or placement of a central line. The risks are much lower for repeated IV access as central lines have a host of other risks, including blood clots, and infections have the potential to be much more serious. However, IV access can be difficult for mast cell patients. The treatment value of IV fluids should be weighed on a case by case basis and IV access on a case by case basis.
For additional reading, please visit the following posts:
Deconditioning, orthostatic intolerance, exercise and chronic illness: Part 5