Unexplained Fevers in people with Huntington's
June 06, 2000
Joan wrote 6-00:
I would like to ask is about the fevers, why did you have a problem
with that? My husband is having trouble with a elevated temp from only 99 to 100.5, but it makes him feel bad. He has had HD about 10 years since diagnosed.
Is this something that goes along with HD? Our doctor does not know about it , but cannot find anything wrong with him. He is losing weight very fast.
Joan - I was sorry to read about the problem your husband is having. One of the first things that comes to mind, in your other email where you talked about his lack of interest and constant sleeping, is the medications he is on. Has his doctor recently changed his medications and/or dosages prior to the changes you are seeing in him?
With respect to fevers there are two areas for consideration why pHD's can have unexpected bouts of high fevers.
(1) A change in the hypothalamus due the affects of HD on the brain and
(2) neuroleptic malignant syndrome which is caused from the drugs prescribed.
Following is some data which has been discussed before which I would
suggest you discuss with your husband's primary physician or neurologist (or whoever has indicated to you that the fevers are not HD related).
21 Apr 1999
After battling years of unexplained fevers and questioning physicians, nurses and finally other pHD/ caregivers Jill L. got in touch with the local research at the SC University and they did a study on the Thermal Regulation Deficit which concluded all of us were NOT nuts in associating the fevers with HD. If not kept in check, when these fevers start reoccurring, it can lead to chronic dehydration which causes lethargy, constipation, etc.
According to Jill the study reflected:
Even without neuroleptic drug interaction, this manifestation of the hypothalamus occurs........ even manifesting as a constant low grade fever in HD patients without bacterial or viral cause......
(Just ask the people who have gone through spinal taps, milograms, endless blood tests, all providing non conclusive information).
Herwig W. Lange, MD. NTC a well recognized physician treating HD from
Dusseldorf/Cologne wrote the following on 4/7/97:
"If fevers caused viral and bacterial causes are excluded, the fever probably is caused by a malfunction of the hypothalamus, an area in the brain which shrinks during the course of HD. It loses about 15% in volume.
This hypothalamic atrophy makes the brain vulnerable to the effects of dopamine, as seen in cases of malignant neuroleptic hyperthermia in patients with HD, a very serious complication of neuroleptic drugs.
This was posted by CCF NEURO MD on April 25, 1997 at 17:30:22:
In Reply to: Fevers in Huntington's Disease posted by Alison R. on April 17, 1997 at 08:48:43:
Since this past September I have been running a low-grade fever, which never goes above 100 degrees. In a few months I was incapacitated to the point that I had to use a wheelchair. I was recently diagnosed with Huntington's Disease. On days where my temperature is low, I feel symptom-free, normal. The rest of the time I am wheel-chair bound. I visited a doctor who says that fevers are not a symptom, and has no medical prescription to help. I have tried numerous aspirins, tylenol, motrin, every over-the fever reducer which doesn't work well. Does anyone out there have any suggestions?
Fever is usually seen in the presence of an infection. The first step in the evaluation of fever is a careful methodical search for evidence of infection by an internist or an infectious disease consultant. If after a thorough evaluation is performed over a period of time and no source of the fever is found then the term "fever of unknown origin" is used.
Some of the more uncommon sources of fever include drug-induced fever (many drugs can produce fever as aside-effect), neuroleptic malignant syndrome (also produced by drugs especially the class of drugs called neuroleptics.)
Some of the medications used in movement disorders such as Huntington's disease can cause neuroleptic malignant syndrome. This is a disorder characterized by confusion, stiffness of muscles, dysfunction of the autonomic nervous system (which controls the pulse rate, blood pressure etc.) A blood test called CPK level is usually elevated in this disorder.
The hypothalamus is a part of the brain that control the internal environment of the body. Potentially dysfunction of the hypothalamus could cause fevers. I had not seen nor have I read of this being a problem in Huntington's disease. Another uncommon cause of fever are some types of cancers. In summary then I would suggest that you seek an evaluation from an internist or a infectious disease expert to being the initial evaluation.
When I posted the above I wrote the following on our experience with fevers:
Kelly's fevers would always start instantly, out of nowhere, and if not caught in time would spike to 105, 106 degrees. Her normal temperature was 96.5. After months and months of going through this and almost killing her with OTC cold medication we finally quit all the associated medication and would only give her liquid Tylenol in her feeding tube when the fever wasn't caught in time.
IF you can catch a fever when it first starts (with Kelly the moment her fever hit 97.5 we took action) you can get it under control, or at least we did.
My freezer was stocked with bags of frozen green peas. Placing bags of frozen peas under key pulse points like back of knees, under armpits and behind the neck would keep the fever from getting higher. This, and keeping her lightly covered and calm, along with ice baths would eventually bring her fever down to her normal 96.5.
The thing that is worrisome about the high fevers is it causes further damage to the brain when they are constant and the person with Huntington's Disease (pHD) has a higher risk of having seizures due to the fevers. Therefore, it's important to watch for them when your pHD is fever-prone and start treating them before they spike too high.------------------