View Full Version : Lupus and Narcolepsy

02-16-2009, 01:46 PM
Does anyone have a diagnosis of narcolepsy and lupus? For 3 years they thought I had sleep apnea, but the CPAP breathing machine didn't help my tiredness. So I saw a pulmonologist and she did a sleep test and nap test and said I had mild narcolepsy. This new doctor put me on Provigil, which is a stimulant and helped to keep me more alert. This was all before I saw the rhuematologist today and she thinks my extreme fatigue is due to lupus. I'm 28, fit, and should not be a candidate for sleep apnea. I only have a few lupus symptoms currently. Any suggestions?


02-16-2009, 02:35 PM
Like Lupus, Narcolepsy can be triggered by a viral infection (one of many suspected triggers). It has been theorized that narcolepsy may be an autoimmune disease, in which the immune system may be tricked into perceiving its own proteins to be antigens. (Antigens are foreign substances targeted for attack by immune factors in the body).
There are several autoimmune diseases that researchers feel can trigger narcolepsy. These autoimmune diseases include multiple sclerosis, rheumatoid arthritis, systemic lupus erythematosus, and type 1 diabetes. In such diseases, the immune system overproduces potent factors called cytokines, which cause inflammation and injury in the susceptible cells and tissues affected by the disease. Most autoimmune diseases also tend to afflict those with particular genetically determined molecules of the immune system called human leukocyte antigens (HLAs).
Some research suggests that an immune attack in narcolepsy may occur against cells containing the brain peptide hypocretin (orexin), resulting in deficiencies that are now believed to be major components of the narcolepsy process. HLAs, particularly a subgroup known as (HLA)DQB1-0602, have been strongly associated with narcolepsy and low levels of hypocretin. Narcolepsy patients who carry this HLA group tend to have a specific syndrome of symptoms that include cataplexy (a medical condition which often affects people who have narcolepsy, a disorder whose principal signs are EDS (Excessive Daytime Sleepiness), sleep attacks, sleep paralysis, hypnagogic hallucinations[1] and disturbed night-time sleep. Cataplexy is sometimes confused with epilepsy, where a series of flashes or other stimuli cause superficially similar seizures) and periodic limb movement disorder.
I don't know if any other members here suffer from narcolepsy & Lupus, but I have a friend who suffers from both. Like you, doctors at first thought that he had sleep apnea, but later found that he had narcolepsy. There are several drugs that are used to treat this condition and they include stimulants such as: methylphenidate (Ritalin®), modafinil, dextroamphetamine, and pemoline.
I hope that this has been helpful to you. Perhaps someone with personal experience will be along to help you.

Peace and Blessings

02-16-2009, 03:32 PM
This is information that neither of my sleep doctors or my rheumotologist told me about. The rheumotologist said that I might not have narcolepsy at all, but just tired from the lupus. It's interesting that she didn't make the connection that the immune system might attack cells in the brain to cause it. Today was my first visit and I barely saw here for 10 minutes. I have a follow up in a couple of months with both the sleep dr. and rheumotologist. I think I need a few more answers.

Thanks again... the support is so nice!


02-17-2009, 01:13 PM
Although I was tested for narcolepsy some ten years ago, I was "only" diagnosed with hypersomnia or excessive daytime sleepiness and ultimately prescribed Adderall (didn't do well with Provigil or as well with Ritalin). Just a few months after my diagnosis, I was complaining of memory loss. Neuro didn't know why I might have memory loss at 33. This past summer I was diagnosed with SLE and Sjogren's. It has made me very curious as to whether it was truly idiopathic hypersomnia or the fatigue of SLE and Sjogren's?

I do not have cataplexy, but my sleep study showed naps consistent with narcolepsy--I just didn't meet all of the criteria for a narcolepsy diagnosis.

I also have Periodic Limb Movement Disorder. I requested a prescription last summer to deal with the PLMD because I felt my quality of sleep had deteriorated. I only took the meds for a couple of weeks because I didn't feel they were helping. In the last month or so, I am sleeping horribly and wonder if I should resume the prescription meds????? If I don't remember to take my buddy Vick (Nyquil) prior to hitting the sheets, I can almost guarantee another sleepless night.

Interesting about the theory of narcolepsy possibly being an autoimmune disorder or triggered by a virus. I had never heard of these theories and will ask my rheumy and sleep specialist about them.