New Hope Found in Treatment for Lupus
A quiet, but strong revolution is taking place in the treatment of lupus. Thousands of hopeful lupus patients are seeking doctors who will work with them, allowing them to try a long term, low-dosage antibiotic drug therapy in hope of complete remission or effective management of their lupus.
The news is spreading slowly, but surely. Lupus patients who are already on the therapy found out about it mostly by reading the book, The New Arthritis Breakthrough by Henry Scammell, or they surfed onto an internet site such as The Road Back Foundation, or they heard it from a friend the way lupus sufferer Mindy did. "I heard about antibiotic therapy from a friend who was using it and had remarkable changes in her overall condition. This was a friend who was deathly ill and then did great after this therapy."
Lupus patients are tired of and discouraged by the standard way of treatment-which is to treat only the symptoms. The toxic medications used in conventional therapy are meant to control and/or suppress the symptoms of lupus. They may or may not work, and when they do, it's only a matter of time before they either become ineffective and must be changed or the patient develops side effects. Granted, there's a pretty wide range of medications to try, but patients are often left in worse shape than before they started the roller coaster ride of conventional therapy.
Antibiotic therapy is partially based on the theory that inflammatory rheumatic diseases such as lupus, rheumatoid arthritis, juvenile rheumatoid arthritis, fibromyalgia, scleroderma, polymyositis, spondyloarthropathy and other forms of arthritis are caused by mycoplasmas and other bacterial L forms. (Mycoplasmas are similar to viruses and bacteria, but much smaller.) Using low dose antibiotics from the tetracycline family, the treatment is aimed at the source of the disease-- or what the infectious theory implies is the source of the disease.
This theory and the therapy was developed by the late Dr. Thomas McPherson Brown, a well known rheumatologist who founded The Arthritis Institute and practiced medicine in the Washington, D.C. area-- and successfully treated over 10,000 patients with this therapy.
When antibiotics are taken by lupus patients, the antibiotics begin to destroy mycoplasmas. At this time, the patient's own defense system, now strengthened by the antibiotics, is able to work correctly because it has fewer microbes to fight-- which creates less inflammation in the tissues-- and the lupus decreases in its' intensity. The lupus patient improves!
Exciting news, but is it too good to be true? "Well, now I have a life!," is how Maggie sums up her feelings about the antibiotic therapy. Maggie has been on the antibiotic therapy for over 5 years. She was very sick for many years with lupus, RA and other rheumatic conditions. Doctors had prescribed everything for Maggie from gold to chemotherapeutic agents-- plus, she had been taking prednisone for 17 years. Her quality of life was poor. With constant pain and fatigue, she wasn't able to do much. As she grew weaker, her muscles atrophied.
On the antibiotic therapy now- and weaned off her other medications-including the prednisone- she says, "
I have energy back
I have no more brain fog!" Maggie goes on to say that she can drive again and do things that she had to give up doing for many years .
Of course the antibiotic therapy isn't quite as simple as popping a couple weeks' worth of antibiotics. It's a long term therapy. Depending on the severity of the disease, the therapy might take as long as a year for improvement to become apparent, although improvement could be felt within a month or two in patients who are started on antibiotic therapy shortly after their diagnosis.
It's important for lupus sufferers to have a committed mind set before they seek a doctor who will work with them to try this therapy. It should be understood that the success of this therapy requires sticking to an appropriate protocol. For example, one of the protocols suggests a low dose twice a day, three times a week. (With antibiotic therapy, more is not necessarily better.) The protocol must be tailored to the individual and can be changed when issues arise. This is important to realize at the beginning of the therapy too, in order to avoid feeling discouraged by the need for changes in the protocol.
Finally, in seeking a doctor, the prescribing doctor need not be a rheumatologist; The antibiotic therapy is now being prescribed by internists and other physicians across the country.
While most of the people currently on the antibiotic therapy had no trouble finding doctors to start them on it, some lupus patients report a reluctance on the part of their doctors to start working on what some consider the source of their illness after years of addressing the symptoms. (It's important to note that clinical trials using antibiotic therapy on rheumatoid arthritis have been promising, but formal, peer reviewed clinical trials for lupus patients still need to be performed. This may account for much of the hesitancy physicians display.)
Amanda, another lupus sufferer, also had a hard time finding someone to prescribe the antibiotic therapy for her. After trying four different doctors, she resorted to subterfuge. "I made an appointment with my GP. I slathered my face with cold cream and ate fudge for a week to promote a breakout
I went to the GP's office
and said, 'I am going to ask you for a type of tetracycline called Minocin for acne. I have some things to do this summer and would like to have nice, clear skin. However, I feel I also need to tell you that I have another agenda, but I want to make it as easy for you to prescribe this drug- whichever way you can- with a clear, professional conscience.' I then presented her with a protocol that I had downloaded from the web site and explained that I had been trying to obtain the drug for over a year, and that I was an intelligent, responsible individual and did not need a lecture on the dangers of overusing antibiotics
I finished by saying it was important to me psychologically to be able to try [the therapy], as I was tired of being told that nothing could be done to help me except to prescribe prednisone when and if my organs became involved."
Only on the therapy for slightly more than two months, Amanda hasn't noticed any improvement yet, but she isn't discouraged. "Since I have been ill for some time, recovery may be slow and gradual."
Finding the right doctor-one who will study the recommended protocols is so important. For example, the doctor-and the patient-should understand that when you start the therapy, you probably will get worse before you get better. Normal in this instance, it even has a name- the Jarisch Herxheimer reaction. Described by some patients on the therapy as short term flares induced by the antibiotics, most see them as proof that the antibiotics are working to kill off the mycoplasmas. When the mycoplasmas die, they create toxins which circulate in the body and this is what causes the temporary worsening of the symptoms. As Meg, another lupus patient on the antibiotic therapy, put it, "
Most of us do experience it, but knowing that it may be coming prepares you for it and gives you the courage to go on and work through the Herx." Lanie, another lupus patient on the antibiotic therapy, described what the Herx reaction was like for her: "Initially, I had a few Herxheimers of great intensity-quite different from my flares- with profuse perspiring and chills accompanying the flare symptoms."
Because of the Herxheimer reaction, patients might wonder if this type of long term antibiotic therapy is generally safe when prescribed by an experienced or informed physician. The answer is a resounding "yes!"
The antibiotics of choice for the therapy are from the tetracycline family. This group of antibiotics works in a different way than all other antibiotics. They work on the core of the germ instead of the outer surface which makes them efficient mycoplasma "exterminators." Another positive factor in using tetracyclines-- they can be used indefinitely without a build up of tolerance to the drug. They are unlikely to produce drug resistant strains of the microbe.
Lupus patients with mild to moderate disease are frequently started on oral antibiotic therapy. Minocin is often the brand name drug of choice for many reasons.* It is time released and stays in the system longer and at higher levels than the generics-and it has the best core penetrating ability. Doxycycline and tetracycline are also commonly prescribed, too, and have proven to be effective. Erythromycin can be substituted for the Minocin in those patients with a sensitivity to the tetracyclines. The choice of which antibiotic to use depends on the patients' symptoms and problems.
According to one protocol mentioned, lupus patients who are severely ill and have been ill for many years may be started on the antibiotic therapy with daily intravenous drips of clindamycin for five to seven days. After the daily series, the IV's may be administered weekly or every other week, as determined by their doctor, before beginning the oral antibiotic therapy.
Does the antibiotic therapy really offer new hope to lupus patients? Sandi, a long time lupus sufferer, thinks it does. She says, "Since beginning Minocin therapy nearly 10 months ago, my energy levels have risen and my pain is much better. I am finally able to enjoy life again! I have been able to completely stop my Plaquenil and have reduced my prednisone to 5 mg daily. My rheumatologist thinks I will be off of the prednisone completely very soon! My ANAs are almost normal for the first time in years. I still have my bad days, but they are fewer and further between. I recommend Minocin without reservation! It is so exciting when people ask me how I feel these days, and I can actually say 'FINE!' and really mean it!"
*Ed: Because of literature which mentions minocycline as promoting drug induced lupus in some patients, some physicians prefer to begin lupus patients on doxycycline. The literature was not conclusive and may have been reporting on an unrecognized Jarisch Herxheimer response.