A month later I came across an MS website and noticed some heated discussion of something called LDN. I began to ask questions and eventually started using this drug. I am enclosing some info from another site to explain what it is.
"What is low-dose naltrexone and why is it important?
> Low-dose naltrexone holds great promise for the millions of people worldwide with autoimmune diseases or central nervous system disorders or who face a deadly cancer.
> In the developing world, LDN could provide the first low-cost, easy to administer, and side-effect-free therapy for HIV/AIDS.
Naltrexone itself was approved by the FDA in 1984 in a 50mg dose for the purpose of helping heroin or opium addicts, by blocking the effect of such drugs. By blocking opioid receptors, naltrexone also blocks the reception of the opioid hormones that our brain and adrenal glands produce: beta-endorphin and metenkephalin. Many body tissues have receptors for these endorphins and enkephalins, including virtually every cell of the body's immune system.
In 1985, Bernard Bihari, MD, a physician with a clinical practice in New York City, discovered the effects of a much smaller dose of naltrexone (approximately 3mg once a day) on the body's immune system. He found that this low dose, taken at bedtime, was able to enhance a patient's response to infection by HIV, the virus that causes AIDS. [Note: Subsequently, the optimal adult dosage of LDN has been found to be 4.5mg.]
In the mid-1990's, Dr. Bihari found that patients in his practice with cancer (such as lymphoma or pancreatic cancer) could benefit, in some cases dramatically, from LDN. In addition, people who had an autoimmune disease (such as lupus) often showed prompt control of disease activity while taking LDN."
I found out that low doses of naltrexone inhibit the body's production of endorphins at night, causing the body to work hard and overproduce them. The endorphins help the body fight the effects of diseases.
The first night I went six hours without having to get up to use the bathroom. I had immediate relief from night time temperature fluctuations. My fatigue level was much better and i endured the heat better than I had for years.
Within a few weeks I was typing and playing the organ again. I also regained the feeling in my toes. Due to my stage of progression, I did not regain any more lost function; however, I believe my worsening condition in the last three years is all due to gaining weight and losing condition in my muscles.
The two side effects of LDN are vivid dreams--mine was the same nightmare where I woke up screaming that I had forgotten to take my medicine--and increased leg stiffness in the morning. I have had many suggestions for dealing with the stiffness but still find that a problem.
One of the best benefits of LDN is an increased sense of well-being. Since depression can be bad for people with MS, anything that makes you fell better is good.
LDN cannot be taken with immune suppressants as it builds your immune system. It can be taken with copaxone, I think. Some doctors refuse to prescribe it because it is off-label and not approved for MS. This is silly as they prescribe amantadine off-label all the time for fatigue. My neurologist gave it to me when I asked for it and was interested in seeing how it worked for me. Because I am secondary progressive and none of the current drugs are intended for SP, she felt as if it couldn't hurt. For those whose docs won't prescribe, there are other (legal) ways to obtain it.
