Hemophagocytic lymphohistiocytosis or HLH is a disease with serious ramifications. It is often a genetically-based inherited condition but can start or be brought on through other means. Lamictal HLH may develop after taking the anticonvulsant drug Lamictal, or lamotrigine, for seizure or bipolar disorder.

With Lamictal HLH and other types of the immune system disorder, the body literally attacks itself through misdirected and hyperactive immune cell action. In an ideally functioning anatomy, these cells would expend their energy destroying malformed or cells damaged through trauma or infection.

In the case of Lamictal HLH, immune system T-cells and Natural Killer (NK) cells do their work and eventually break down healthy tissue and organs.

According to an article by Cincinnati Children’s the misdirected immune system cells in Lamictal HLH can sometimes be seen inappropriately devouring healthy cells when examining bone marrow under a microscope. The activity is called hemophagocytosis.

Lamictal HLH can send off a variety of anatomical signals that something isn’t working right. Symptoms might resemble that of influenza or other conditions and easy be confused, but most often they are accompanied by the telltale Lamictal rash. Lamictal HLH symptoms include:

• Inflammation of the lymph nodes
• Unexplained Fever
• Skin and eyes with yellowish tint, jaundice-like
• Visual Disruption—Blurry eyesight, seeing ‘spots’ or seeing ‘double’
• Breakthrough seizures or seizures without pre-existing condition (taking Lamictal for bipolar disorder)
• Swollen upper right abdomen with pain or sensitivity in region of liver
• Difficulty maintaining balance or coordinating ambulation

Other symptoms of Lamictal HLH which would require a blood test or tissue sample to determine are:

• Blood triglyceride levels above normal range
• Blood levels of protein ferritin—which serves to store and release iron–above normal range
• Blood levels of fibrinogen below normal range
• Red or white blood cell counts below normal range
• Witnessed hemophagocytosis under microscopic evaluation
• Blood levels of CD25 above normal range—indicating extensive and ongoing immune cell activity

Sufferers of HLH will most often have blood tests that reveal at least five out of the above six results.

The U.S. Food and Drug Administration Warning

The U.S. Food and Drug Administration (FDA) released a safety communication regarding the drug Lamictal in April 2018. The safety notification is linking the seizure and bipolar treatment drug with Lamictal HLH.

Because of this alleged connection, the drug oversight agency is forcing the manufacturer, GlaxoSmithKline, to change the medication’s labeling and other information included with the prescription. The FDA wants the warning to be clear and unambiguous, so decisions can be formed regarding its usage that are based on full information.

HLH can severely damage healthy tissue and organs over time. It is never recommended, however, that a patient eliminate a drug regimen without the consultation and counsel of the prescribing physician.