Authors: Rita Baron-Faust,Jill Buyon
The Autoimmune Connection: Essential Information for Women on Diagnosis, Treatment, and Getting On With Your Life (57 page)
As Mary Kay and Ana discovered, having a gynecologist who’s knowledgeable and up to date on your particular autoimmune disease is extremely important, since you’ll need expert guidance and follow-up should you choose to have a child or take estrogen (or its alternatives).
For example, says Mount Sinai diabetologist Dr. Carol Levy regarding decisions about taking oral contraceptives or hormone replacement, “Up until a few years ago there was this misconception among doctors that women couldn’t go on birth control pills because it would cause fluctuations in blood sugar levels. That misconception has been passed along to patients, and it often makes them fearful. Oral contraceptives can make glucose fluctuations more predictable, but we need to be able to work with the gynecologist.”
Information may not be offered, or your questions about postmenopausal hormones may (again) be answered with “We don’t know” or “That’s a question you need to take up with your gynecologist.” “Rheumatologists may not discuss it, and the gynecologist may not know anything about autoimmune disease,” remarks Lila E. Nachtigall, MD, of the NYU School of Medicine, who has been researching estrogen for decades. “The question of hormones, be it birth control pills or hormone therapy, is part of the whole patient picture. So a woman needs to get answers somewhere. For our part, we find it extremely helpful when a woman keeps track of her symptoms, because it can help us individualize care.”
Keep a symptom diary during the menstrual cycle, pregnancy, or menopause, and bring it with you to doctor visits and ask questions. Don’t ignore regular pelvic exams and Pap smears, and periodically have pelvic floor muscle function assessed, especially in diseases that affect muscle and nerve function. Many women who become disabled as a result of their disease have difficulty finding a gynecologist who’s not only knowledgeable but also has adequate equipment (like specially designed examining tables that can adjust to women who must use wheelchairs). Incontinence and sexual problems can be side effects of multiple sclerosis, myasthenia gravis, and other diseases and require special and empathetic attention. The specialist treating your disease can often help with a referral to a gynecologist. Sources of information include the American College of Obstetricians and Gynecologists (ACOG). Your specialist can often make a referral to an OB/GYN.
I decided to combine drug therapy with the natural treatments. I had been seeing a naturopathic doctor before I was diagnosed with autoimmune hepatitis, and she had recommended milk thistle for my liver. Milk thistle is an herb that contains
Silybum marianum
, which has been shown to help regenerate liver cells. It doesn’t cure the hepatitis. She also told me to avoid fatty foods and alcohol, and had also recommended acupuncture before I was diagnosed. That made me feel better, psychologically at least. Thanks to that naturopath, I was also taking calcium from the beginning. When I moved to New York I started seeing a liver specialist, who told me there was no harm in my taking milk thistle, but it was probably a waste of my money. I’ve continued to take it, and I think it’s helped.H
ANNAH
Up to 90 percent of arthritis and autoimmune patients are using some form of CAM. But this widespread practice is often based not on medical evidence but on word of mouth—and hope.
Some studies of CAM for autoimmune diseases, notably RA, have been published in respected, peer-reviewed journals. However, many widely publicized remedies are promoted by Internet advertising, relying heavily on patient “anecdotes” with little or no basis in fact.
In writing this book, we made a decision not to delve too deeply into the myriad of complementary therapies being used by women with autoimmune diseases. That’s a subject for another book.
A number of CAM therapies that have been investigated and found to be effective for some patients include acupuncture and omega-3 fish oil.
Fortunately, there’s the NIH
National Center for Complementary and Integrative Health (NCCIM)
, where you can find descriptions of complementary therapies, herbal remedies, and supplements (see
Appendix A
). But there are many cautions.
While many women find complementary therapies extremely helpful, it’s important to remember that “natural” doesn’t always mean safe, and that supplements are largely unregulated. There’s no guarantee that you’ll get what you pay for. And studies have found that some herbal supplements contain little or none of the active ingredient listed on the label and may even be contaminated.
We urge you to investigate everything carefully, consult the physician managing your care, and don’t be afraid to discuss herbs and other things you’ve tried. (After all, glucosamine was once on the fringes, and now it’s a widely accepted therapy for osteoarthritis.) Some drugs may make your condition worse or cause interactions with medications you’re taking (such as evening primrose oil and anticoagulants); many herbs should not be taken before surgery; and some herbs (like kava) may even be toxic.
This is one area where you need to do your homework. Realize that many remedies have a powerful placebo effect—in other words, if you
believe
something is going to help you, chances are
it will
.
It sounds weird, but if you have to have one of these diseases, this is a great time.
They have made leaps and bounds in research. There is some real hope for MS and other diseases, and you need to hang on to that hope. They’ve made more progress in the last few years than they have in the last 25 years. Because of AIDS, they’ve learned a great deal about the immune system and the central nervous system that will benefit people with autoimmune disease. We also have the Internet, which is a godsend. You get a lot of support and information. There are bulletin boards and chat rooms. And there’s tons of information. Even if you have a handicap, so much more is accessible than before, and I thank God I was born now rather than 25, 30 years ago. I would tell women, don’t shut yourself in, get out and be part of the world you live in. The more you isolate yourself, the scarier the world becomes. That can be quite a rut, and it’s easy to slip into that when you have a chronic disease. The Internet is also a great place to make contact with people, and women should get in touch with support groups, because they can give you so much. Whatever you do, don’t isolate yourself.
M
ARIANA
As Mary Kay puts it, you almost have to make a profession out of your own healthcare. But you can’t go it alone, and any chronic disease can have its rough spots. Support groups can be lifesavers. It may be hard to walk into that group meeting for the first time, but once you get over that hurdle, a group can be a source of information, friendship, and emotional support. Find a support group that avoids a “pity party” atmosphere, advises Ladd.
Millions of people find valuable resources on the Internet. You can do a surprising amount of research right from your own home. You can find information that can help clarify symptoms, uncover sources for finding a good diagnostician, and share your experiences with others. Many libraries provide access to the Internet through their computers and will even help guide your search. Contact your hospital’s community education or outreach program to find out about support groups.
A comprehensive listing of resources and self-help groups appears in
Appendix A
, and a list of recommended reading is included in
Appendix B
.
As Virginia Ladd tells AARDA patient forums: “Be your best advocate.”
I’m obviously a success story, but what I really want women to know is not to give up, not to think that this is going to be the only controlling factor of their lives from now on.
Because that’s not necessary at all. . . . They find their way to fight it, whether it’s through exercise or medication. I think exercise is totally essential. I can’t imagine doing without it. I would put that right on par with medication, frankly. But you need to take action. There’s so much fear of being crippled, or permanently damaged, or not being able to pursue the work you love and being dependent on loved ones. You need to keep moving and be as strong as you can be; you can’t feel helpless. They told me I would never recover, but here I am.
K
ATHLEEN
T
URNER
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.
W
hen I first learned I had an autoimmune disease I had just completed my MD and was moving along on my PhD training in the laboratory. Just like the stories contained in this book, the diagnosis took a long time in coming, probably a good 6 to 12 months. Ironically I was studying autoimmunity in mice at the time, and as the old adage goes, if you study it long enough you will finally get it.
It was a senior and very seasoned laboratory technician who noticed I was turning yellow. Indeed, I ate lots of carrots every day (my excuse) and was pale from long hours in the lab instead of the summer sun. The consensus lab diagnosis, a dangerous concept in and of itself, was that I must have been coming down with hepatitis from some patient encounter over the past year. After much prodding I dutifully went to the student health service (a highly risky venture). It took many trips to rule out the common causes of yellowed skin, but eventually I was diagnosed as having severe hypothyroidism. My yellow skin represented very longstanding disease.
I was relieved to know what was wrong, but my PhD advisor was stressed. He personally called the physician in charge of health service to let her know that she needed to reevaluate her diagnosis (this was prior to HIPPA rules!) or that I must have misunderstood her words and I had hyperthyroidism. My thesis advisor was certain I had
hyper
thyroidism (overactive thyroid). My nickname in the lab was “fireball,” and it was hard for everyone to believe that the corrective therapy might actually supercharge the already energetic Faustman. My story had a happy ending. If there is one autoimmune disease that is almost entirely corrected by a little pill, it is hypothyroidism. (And yes, I did get my PhD done on time.)
But for millions of women, diagnosis and treatment do not come as easily. One of my long-term acquaintances, who herself worked in the field of autoimmunity for 25 years, had three major surgical interventions, all mistakes. Her dentist later correctly diagnosed her as having multiple sclerosis. You can
be fully educated and be in the care of smart doctors, and those smart doctors can miss these diseases time and time again.
If you have autoimmune disease or know someone close to you who has one of these dreadful diseases, consider becoming a lay advocate. You can have a significant impact on influencing funding for research. You have unique motivation that distinguishes you from the scientists who do the research work; you do not care
who
discovers the cure, you only want the cure and with as great a speed as possible.
I think as scientists we must do significantly better at coming up with cures for these diseases. In my lifetime, I want to hear someone say: “I had type I diabetes 10 years ago.” Over the next decade, I think it is highly feasible that we may be able to actually cure some of these diseases.
Because there are so many different aspects to autoimmunity, we will be attacking these diseases on a number of fronts. As this book outlines, there will be new ways to diagnose these diseases before they occur. This may be by a simple blood sample. There may be ways to stop certain forms of autoimmunity prior to severe end organ damage, and there is hope, yes hope, that even once these diseases occur, there may be ways beyond treatment of symptoms to actually reverse the disease.
As our work highlights, the now global push to move multi-dosing BCG “vaccine” (which may block the action of defective T cells, see
page 213
) into established type 1 diabetes, multiple sclerosis, and Sjögren’s syndrome highlights the ability to take generic drugs and recycle them for new indications. BCG vaccine therapy also has another advantage—perhaps safety and affordability could be features of this drug too.
In this book you’ve learned about inflammatory cytokines and the damage they can cause. We have already developed medicines to disable some of these cytokines, but the task is now to uncover and interfere with the pathways that lead to their release. The anti-cytokine therapies in their many forms are on the pharmacy shelves, but just remember they do not stop the disease, they only treat the symptoms.
We must also target the cells that cause destruction in autoimmunity. It was long thought that once the disease was fully established identifying markers of only “bad” cells would not exist. On the research and clinical trial side, these “bad” cells can now be uniquely identified and monitored. And in our
clinical trials with the 100-year-old generic drug called BCG, we can even see the death of these cells.
Finally we need a greater understanding of the antigens that provoke autoimmunity to begin. This research is moving forward, albeit more slowly. It was long thought there would only be one antigen per disease, but perhaps the more typical picture is that there are many antigens that trigger disease.
The challenge will be to make the agents that target these pathways nontoxic (or at least less toxic). Corticosteroids are an example of a wonderful medicine that has devastating effects. The cost of a cure should not be another disease or disability.
Indeed, there are medications in the pipeline and in research laboratories that appear for the first time to not only be specific for the “bad” cells but also to selectively eliminate the “bad” cells. The remarkable data in autoimmune diabetes show that disease can be permanently eliminated by a short course of these drugs, and the end organ, in this case the insulin-secreting islet cells, regrows in adult animals. This sort of research opens up new opportunities for all afflicted with autoimmunity but also opens up the paths for identifying the adult stem cells with unrecognized potential for treating many diseases and perhaps even slowing the aging process that we all experience.
Why talk about all of this work? Much of this work is actually in various stages of clinical trials, both in academia for the recycled generic drug approaches and in the pharma world for the new drugs. We need to find the right drugs, the specific drugs, and if these drugs already exist for other diseases, immediately “recycle” generic drugs to needy autoimmune patients. I believe public opinion and public pressure is necessary and extremely helpful at keeping the research, both clinical trials and pharmaceutical lab research, around the world on track. Which leads me to my final thought: do not be discouraged, and be an advocate and volunteer.
Denise L. Faustman, MD, PhD
Associate Professor of Medicine
Harvard Medical School