This is part 2 of a feature, in which Nutritionist Karen Kaufmann MS, keeps us informed of her progress, and how she has been using “unapproved” products and “approved” products in an “off-label” way to help control and treat her condition. In particular Karen informs us about her experiences the latest drug development of Milnacipran.

Update on Milnacipran

When I wrote “The Next Wonder Drug” article for the Summer 2004 Antiaging Magazine, I had been taking Milnacipran, (brand name Ixel) for about 2 weeks. As I sit at my desk today, the sky is bright blue, the air is clear, and there is a hint of the crispness that portends another beautiful fall season in New England. So this seems like a perfect opportunity to share my personal experience with Milnacipran and a number of other smart drugs that help me maintain an excellent quality life, in spite of the health challenges I face.

I suffer from a debilitating chronic illness called Systemic Lupus Erythematosus (SLE). SLE is a chronic disorder of the immune system that causes inflammation in various parts of the body. For most people lupus is mild, affecting only a few body organs; for others, it may cause serious and even life threatening problems.

The body’s immune system normally makes proteins called antibodies that protect the body against viruses, bacteria, and other foreign materials. These foreign materials are called antigens. In an immune disorder like lupus, the immune system loses the ability to distinguish between foreign substances (antigens) and its own cells and tissues. The immune system then makes antibodies directed against ‘self.‘ These antibodies, called autoantibodies, react with the ‘self’ antigens to form immune complexes. These immune complexes build up in various tissues and cause inflammation, injury to tissues, and pain. These immune complexes can deposit in the joints, connective tissue, or any organ such as the heart, the lungs, the kidneys, the liver, and the brain. It can also cause all sorts of blood disorders including thrombocytopenia, (a low platelet count), hemolytic anemia, or a hypercoaguable state where the person is in danger of forming arterial or venous blood clots.

No two people with lupus have the exact same symptoms, but almost universally, people with lupus suffer from joint pain in numerous joints at the same time and an indescribable fatigue. In my case the illness is also affecting my central nervous system. The American College of Rheumatology (ACR) in 1999 came up with a list of 19 criteria that could be present when lupus involves the brain. I am going to list some of them here so that you get a sense of just how diverse and complex this disease is.

• Acute Confusional State
• Anxiety Disorder
• Asceptic Meningitis
• Autonomic Disorder
• Cerebrovascular Disease
• Cognitive Dysfunction
• Demyelinating Syndrome
• Headache
• Mononeuropathy (single/multiplex)
• Mood disorders
• Movement disorders
• Cranial neuropathy
• Psychosis
• Seizures
• Transverse myelitis

So you see, the challenge can be as simple as a headache or as serious as psychosis. I experience cognitive dysfunction (which I call brain fog), cluster migraines, and as mentioned in my previous article, atypical trigeminal neuralgia.

During my last flare I faced a new challenge- serious depression. Many people would say of course you would become depressed. You are in tremendous pain and have unbearable fatigue. But in this case the depression was caused by the disease process itself. How lupus causes all these different things remains a mystery and there are probably a number of different things happening at once.

Perhaps because lupus affects women to men in an 8:1 ration, perhaps because the disease is so complex; very little is actually known about the cause or the pathogenesis of the disease. In 30 years there has not been a drug developed specifically to treat lupus. Medical therapies are grounded in symptomatic relief, and often the medication is worse than the disease itself. Doctors prescribe nonsteroidal anti-inflammatories at the outset, but most patients wind up having to take strong immunosuppressive agents such as prednisone or chemotherapy drugs. I never considered that an option. I have been focused on maintaining my quality of life with lifestyle changes (diet and exercise), nutritional supplements (sometimes taken to offset the side-effects of the medications I must take), and taking the best smart drugs (nootropics) available. I do this, so if and when medical science finds a reasonable treatment for this disease, I will still have some brain cells left to take advantage of it! And I must say, in the 14 years I have dealt with this chronic illness I have done very well.

I want to let you know how I got here. After 20 plus weeks on the Milnacipran, I have been able to cut my pain medication in half, and the depression is in remission, so I can once again take pleasure in the little things. I found Milnacipran extremely easy to tolerate, (which is a little strange for me, because I have experienced numerous adverse drug reactions with many medications my physicians have prescribed). It was eight or nine years ago when I first discovered IAS and began a program to protect my gray matter. One of the first nootropics I incorporated into my health regiment, (which already included CoQ10 and Idebenone), was Piracetam. I am no expert at these things so I can only refer you to the extensive article James South, MA wrote on subject; Piracetam- The original Nootropic. [Ed.- That article can be read in the Summer 2004 Antiaging Magazine or at: http://www.antiaging-systems.com/extract/piracetam.htm]

At that time my symptoms were fairly benign but I knew my brain was under assault and I wanted to do everything that seemed rational to protect my neurons. In designing a program for yourself, you always want to consider the risk/benefit ratio. Could the possible side effects outweigh the potential benefit?

In the case of Piracetam, the side effect profile was excellent, so that is where I began. The Piracetam broke the ice for me and as I was in for a penny, why not go in for the pound?

The next smart drug I added was Pyritinol. Again, I am no expert, so the best resource I can refer you to is James South’s article on the subject; Pyritinol- The Antioxidant, Immune-Enhancing, Anti-Rheumatoid Arthritis Nootropic. [Ed.- That article can be read at: http://www.antiaging-systems.com/extract/encef.htm]

The most compelling reason for me to take this drug was the fact that pyritinol is extremely beneficial to people who are recovering from cerebral trauma and strokes. One of the possible causes of cognitive dysfunction in people with SLE is they may be experiencing tiny and numerous transient ischemic attacks (TIAs).

In the case of lupus and the brain, there is so much speculation because MRIs are not sensitive enough to be helpful, and we don’t routinely do a brain biopsy to see what sort of damage is occurring. Despite my best efforts to keep myself well through diet, exercise, nutritional supplements and smart drugs; I was still plagued by bouts of unbelievable fatigue. If you have never suffered from chronic fatigue syndrome, fibromyalgia, Lyme disease or another debilitating systemic illness, it is difficult to understand the kind of fatigue I am talking about. This is a whole body fatigue, “fatigued to the bone”, and a fatigue that does not resolve with sleep.

One of the smart drugs that went a long toward giving me life back is Modafinil. Again, I will refer you to IAS’s website for more detailed information. [Ed.- Modafinil articles can be seen at: http://www.antiaging-systems.com/extract/bychemical/modafinil.htm]

Modafinil was a drug originally developed for narcolepsy (sleeping in the daytime). It definitely increases wakefulness and alertness for me, without making me feel ‘wired’ and without interfering with my sleep. Many doctors will prescribe Ritalin for their patients who experience the type of fatigue I am reporting. However, Ritalin is an amphetamine and does not fare well on my risk/benefit ratio. Whereas, Modafinil not only increases my energy level, but it truly helps dissipate my ‘brain fog’.

The last smart drug in my personal portfolio is Memantine. Again, for more detailed technical information on Memantine, go to IAS’s website. [Ed.- Information available at: http://www.antiaging-systems.com/a2z/memantine.htm]

Memantine was originally approved for Alzheimer’s disease and it is an NMDA receptor antagonist. There is a rheumatologist in the New York area who has been researching lupus and the brain for many years. She now postulates that some of the cognitive dysfunction in SLE is being caused by immune complexes binding to the NR2 receptor. It is exactly this receptor that Memantine protects. In addition, the NMDA receptors are definitely involved in some types of neuropathic pain conditions. Neuropathic pain is the most difficult pain to treat successfully. Unpublished studies did demonstrate Memantine was helpful in alleviating certain types of neuropathic pain such as post herpetic neuralgia, facial pain, and pelvic pain. Adding Memantine did help me achieve better pain control, but even if it did not, the research that it can protect certain neurons under fire in my case is quite compelling.

As I stated in my previous article, I believe that if it wasn’t for the access I have to these ground breaking medications I wouldn’t be alive today.

I hope I haven’t bored you with my personal saga. It is my deepest wish that others can benefit from the many things I have learned as I continue this journey toward optimal health.