Questions posted in the Neurology and Neurosurgery Forum have been answered by doctors from The Cleveland Clinic Foundation.

Question Title: Dilantin lymphadenopathy

Forum: Neurology Forum
Topic: Pain

Re: Dilantin lymphadenopathy

Re: Dilantin lymphadenopathy

Posted by ccfNeuro MD on June 12, 1997 at 10:32:21:

In Reply to: Re: Dilantin lymphadenopathy posted by Teri Ruffini on June 09, 1997 at 21:22:17:

: : My sister is 39 y.o. and 3 weeks ago had two grand mal seizures for the first time in her life! The Docs placed her on Dilantin. All tests were negative (CT Scans, MRIs, spinal tap, etc.). Her sodium level was low and she has had recurrent UTIs for about a year. The diagnosis of "viral encephalopathy" was given because they couldn't find the cause. She has had about every side effect possible
: from the Dilantin: fever 101 F, joint pain, mental confusion, but the one that most concerns me is the swollen lymph nodes in her neck. The Docs have stopped the Dilantin and just want to "watch" the nodes. I think they should be more aggressive. (She is also told she is hypothyroid, but is not being treated)
: Her physicians consist of a Family Practice doctor and a Neurologist. She asked about seeing an endocrinologist and/or hematologist and the Neuro Doc said he agreed, but "there is so much going on" that he thought it was premature to refer.

: She is a physical therapy assistant and is unable to return to work, generalized weakness and fatigue are a daily complaint. I am extremely concerned about the lymphadenopathy; if it is Dilantin induced, can it be fatal? Couldn't there still be an underlying cause? Her latest symptom is a body rash. (She tells me her latest WBC count in still elevated, I don't know the result). Please help, my sister
: lives in Buffalo, NY; I am in Florida.

: Thank you in advance for any information or recommendation you may have.


Terri, phenytoin (trade name Dilantin), is one of the most commonly used antiseizure medications. It’s a very valuable drug for the treatment of epilepsy (as well as other conditions), but like all other drugs unfortunately, it has side effects. Rarely, they can be quite severe. Rashs occur in up to 19% of patients receiving phenytoin. These are usually self-limited and don’t cause much of a problem. A small percentage of patients, though, can develop an allergic reaction called the “phenytoin hypersensitivity syndrome” . The incidence of this is not known because of its variability in presentation, lack of strict diagnostic criteria and the failure to report all cases. It usually develops within three months of initiating therapy (assuming there has not been previous exposure to the drug). The highest incidence of severe phenytoin hypersensitivity syndrome seems to have occurred in elderly black male patients. The initial symptoms frequently are fever and rash. The rash initially consists of patchy redness which can evolve into an itchy, more generalized rash. Some skin may desquamate (slough off) as it resolves. More rarely, the rash can be even more severe and involve extreme sloughing of the skin. The fever can persist for weeks. Other symptoms of the syndrome can include pharyngitis (inflammed tonsils and throat), generalized or localized edema, increased white blood cell count, and lymphadenopathy, and an enlarge spleen and/or liver. Liver function tests may be abnormal, as well.

The lymphadenopathy can either be generalized or localized and is usually tender. It is most frequently due to “benign lymphoid hyperplasia” which is proliferation of normal cells. Another less common lymphoid reaction pattern is “pseudolymphoma” where there is some distortion of the normal lymph nodal architecture. Both of these resolve after discontinuation of the phenytoin. To be complete, I should add that there is a slight increased incidence of lymphoma in patients taking phenytoin chronically. There have also been a few reports of lymphadenopathy recurring after initial resolution after the phenytoin was discontinued. Lymphoma developed in these people.

There is no specific therapy for phenytoin hypersensitivity syndrome other than stopping the drug. All these symptoms should resolve after the phenytoin is stopped. Most cases of phenytoin hypersensitivity syndrome do well and total recovery is usual. Patients with persistent symptoms may require more extensive diagnostic evaluation. It is important that these people NOT TAKE PHENYTOIN AGAIN, because even very small amounts can provoke another bout of hypersensitivity reactions which may even be more severe. I understand your concern for your sister. Its difficult for me to comment on the exact course of treatment, due to the limited amount of information and the complexity of your sister’s case. If your sister is interested in getting a second opinion regarding her condition, there are several good epilepsy centers relatively close to her including the Columbia-Presbyterian Medical Center, University of Rochester, and The Cleveland Clinic ((216) 444-5559). I hope this information was helpful to you. This was provided for general medical education purposes only. Please consult your physician for diagnostic and treatment options of your specific medical condition.

[Neurology Forum]      [Neurology Forum Archives]

[Health News and Commentary]