Authors: Rita Baron-Faust,Jill Buyon
The Autoimmune Connection: Essential Information for Women on Diagnosis, Treatment, and Getting On With Your Life (56 page)
Taking charge of your care means getting as much information as you can, keeping track of symptoms and medications, and coming prepared to every doctor visit.
Ask questions about other family members and make a family medical tree. It’s not simply an exercise in genealogy. In some cases, testing may be advised for close family members, especially in cases of type 1 diabetes and thyroid disease. You may need additional testing for autoimmune diseases that cluster with your particular problem.
Thyroid autoimmunity is somehow predisposing to type 1 diabetes. Addison’s disease, adrenal gland insufficiency, is found more commonly in patients with type 1 diabetes; about 1 in 200 to 250 patients with type 1 diabetes will also develop adrenal insufficiency. This can be a very serious problem in a person with diabetes, because it can be life threatening and is often missed. So it’s worth asking about getting tested.
Some experts believe that vitiligo is a skin marker for propensity to autoimmunity, especially thyroid problems, adrenal insufficiency, and type 1 diabetes.
In some cases, if a disease has a strong genetic component, genetic counseling may be needed. You also need to ask questions about the chances of passing along an autoimmune disease to your child. Physicians should be board certified in Medical or Clinical Genetics by the American Board of Medical Genetics. A genetic counselor (who could be a social worker or other health professional) is usually trained in a graduate program. (See
Appendix A
.)
Just as physicians keep an up-to-date file on each patient, so should you keep a medical file for yourself. This can be a notebook or a file folder, and it should contain a record of doctor visits, copies or records of lab reports and other diagnostic tests, and a list of medications you’re taking (the dose, when and how each drug is taken, and so on).
You should have a section for a diary of symptoms. Because knowledge of autoimmune clusters is just beginning to reach physicians who are not specialists in rheumatology or endocrinology, you need to keep track of symptoms, even those that don’t appear to be related to your specific diagnosis. An unusual symptom may be the very first clue that you have a second (or third) autoimmune disease.
If your clinic or medical center provides access to your electronic health records (EHR), do take advantage of it. With these systems you’ll be able to see all of your lab results and even imaging reports. Ask about it at your next medical visit. You may also be able to obtain copies of MRI or x-ray images.
At each doctor visit, bring a list of symptoms you’re experiencing; review that list with your doctor and give him or her a copy to keep in your file. As you’ve learned from reading this book, when you have an autoimmune disease you can often experience a number of symptoms that may seem unrelated. So let your doctor know about any new symptom. And don’t worry that your doctor will think you’re a chronic complainer, or that you’ll just end up with another prescription. Be honest. You only hurt yourself if you don’t speak up.
Autoimmune diseases are not simple. And many times, especially during the first physician visits, you may get a lot of information to process in a short amount of time. Bring your medical diary or a pad and paper, or use your smart phone or a digital tape recorder to record the visit.
Make sure you understand unfamiliar terms, the tests you may need, and treatment options. And before you leave, go over what was discussed so you’re clear about the details.
You need someone who not only knows about your disease, but who’s alert to the other complications and other diseases. When you have a symptom, they have to think it may not just be your disease acting up. You have to be very alert, you have to know your body, and you have to speak up when there’s something bothering you. We may not always be good at articulating exactly what’s wrong, but there are also too many things that doctors will say are “all in your head.”
L
AURA
, 46
After I was first diagnosed with Crohn’s, I had to have surgery. They removed a foot of my small intestine, my appendix, and some of my colon. But the
gastroenterologist I was seeing in the hospital didn’t really explain what any of the follow-up was going to entail and basically discharged me without any medication or anything. And about a month after I got out of the hospital, I started having trouble again. I tried to call him, but he never returned any of my phone calls. About two years later I started developing some symptoms, and they finally put me on medication. But that was a gap of two years, which allowed my disease to get worse again. Now I know to ask questions and find out as much as I can.J
ANINE
The American College of Rheumatology (ACR) and other experts advocate “shared decision making,” and so do we.
The time is long past when patients blindly accepted doctors’ pronouncements. And that’s a good thing. You need to form an active partnership with your doctor. Ask questions from the outset. Make sure you get a thorough clinical examination and ask if your test results are being stored in an electronic health records database that you can access (even individual practices are adopting these systems).
Be sure to describe symptoms in detail (again, make a list) and emphasize how your symptoms impact your daily functioning. Don’t allow any physician to dismiss your symptoms as “stress.”
If you’ve ever hesitated to speak up in your doctor’s office, you’re not alone. Many people are afraid to ask their doctor too many questions, worrying they’ll be seen as “difficult” patients.
In fact, a survey conducted among almost 4,000 adults with rheumatoid arthritis in 13 countries by the Harris Poll reveals that 41 percent of patients feel uncomfortable discussing their concerns and fears with a healthcare provider.
9
Almost one-quarter worry that asking a lot of questions and being perceived as “difficult” will affect the quality of their care, according to the RA NarRAtive survey. Only 35 percent feel like they have any control over their treatment.
“Unfortunately, patients may default to a submissive role with their doctor when they are in pain or losing some of their function,” comments
Allan Gibofsky, MD, professor of clinical medicine and public health at the Weill Cornell Medical College.
There are ways to improve communication with your physician. “For one thing, make eye contact; too many patients discuss their concerns while a doctor is looking down and writing in their file or looking at a screen while they enter information on a computer, which can be a distraction for both parties,” says Dr. Gibofsky, an attending rheumatologist at the Hospital for Special Surgery in New York.
Be mindful that many physicians have time constraints, so ask about making an appointment when there will be some extra time for discussion, he advises.
Keep asking what
else
could be going on (and with autoimmunity a lot can be going on), and explore your potential diagnosis together. Carefully fill out the assessment forms and questionnaires that help determine disease activity.
“Don’t consider the office visit over until your concerns are addressed,” adds Dr. Gibofsky, who served as cochair of an advisory panel of physicians and patient advocates who devised the RA NarRAtive survey with a major pharmaceutical company.
During your exam, or if you’re asked to go for extra tests or imaging, do ask your doctor what he or she is looking for.
As you’ve seen, tests vary for different autoimmune diseases, and often there’s no single test that can diagnose your condition. You may be faced with the prospect of undergoing a battery of tests, and you need to ask what each is for and whether there are any alternatives. Will a diagnostic procedure be done on an outpatient or inpatient basis? Will there be any pain or discomfort? Will you need anesthesia? If you suffer from claustrophobia and need an MRI (which means spending 30 minutes inside a magnetic tube), ask about medications to make you more comfortable during the procedure. Ask how much a procedure costs, and whether it will be covered by your health insurance. Who will get the test results, and what will they tell us about your condition? Although diagnostic criteria can define a disease, your particular array of symptoms may be uncertain.
Get a second, third, or fourth opinion if need be. Because autoimmunity is still just being recognized as an underlying cause of many diseases, and because symptoms can be vague, many doctors don’t initially think to test for autoimmune diseases.
Ask questions about treatment options. What are the advantages and disadvantages? How long will the treatment last? Make sure all your questions are answered so that you thoroughly understand the risks
and
benefits.
“I tell my patients that the only ‘silly’ question is the one that you don’t ask. If it’s important enough for you to make note of it, then it’s important enough to discuss,” stresses Dr. Gibofsky.
I was seriously depressed from the prednisone, though I didn’t know it at the time. Prednisone increases anger, anxiety, and depression—none of which any doctor ever told me. And the methotrexate was even worse. When I had a period I thought I was hemorrhaging, and twice I almost went to the hospital just thinking, “This is it. This is the end.” Again, no one spoke to me about any of this. I’d look it up in a medical guide and find out what the hell was going on for myself. And I would wake up each morning in this rage, and have to tell myself, “OK, wait a minute. This is not me. I’m not angry. I don’t have any reason to be angry other than life, and what was going on with my disease, but there’s nothing to be angry at. Just chill out. Calm down. It’s the medication, it’s not me.” Which I needed to do . . . I was risking personal relationships all over the place. I have wonderful friends and a wonderful husband, but there’s only so far you can go before they say, “Would you please stop?” And I wish someone had spoken to me about the possible effects of the medication on my thinking, my emotions.
K
ATHLEEN
T
URNER
As Kathleen Turner found out the hard way, medications can have unexpected side effects. And in all likelihood you’re going to be taking several medications, all of which have side effects. So you need to know how they can affect you, and how they may interact with other drugs you may be taking (including over-the-counter drugs, supplements, and herbs).
Write down the name of each drug, what it’s used for (an immunosuppressant or a pain reliever, for example), the dose you need to take and how often, if it needs to be taken with (or without) food, and any potential side effects.
To be as informed as possible, read the pharmacy information sheet that came with your prescription (or check the web page for the specific medication). It’s also wise to check the FDA web site (
www.fda.gov
) for any updated warnings and look at a current edition of the consumers’ version of the Physician’s Desk Reference or check your library’s copy of the PDR or the online version (see
Appendix A
) to obtain complete information on medications that have been prescribed for you.
If you’re seeing more than one doctor, make sure they
all
know what medications you’re taking, including over-the-counter drugs and herbal preparations. Sit down once a year with your physician to review those medications to make sure you still need the same drug and the same dose.
Save drug information package inserts in your medical folder at home for reference. Even commonly used medications may, in very rare cases, cause severe, possibly fatal reactions. There’s usually a section that says “Contact your doctor immediately if . . . .” This contains key information about potential side effects and interactions. Your risk of serious side effects may be small, but you need to know the warning signs. If you don’t get an insert, ask for it, or get a computer printout of drug instructions and precautions from your pharmacy. If you have any reaction to a drug, call your doctor immediately.
Don’t be surprised if your questions about how medications affect women prompt a response of “We don’t know—there haven’t been any studies on that.”
In writing this book and talking to preeminent experts around the country, many of them concede that knowledge is very limited about the effects of female and male sex hormones, and even the effects on pregnancy or menopause of medications that have been used for long periods of time. Clinical trials of medications sponsored by the National Institutes of Health have only been required to include women since 1989 (women had been excluded because of concerns about potential birth defects and the notion that female hormones could confuse trial results). Reporting of those clinical trials to include sex differences in responses and side effects of medications has only been mandated by the Food and Drug Administration since 1999.
Medication costs are escalating at an alarming rate, especially for the newest brand-name drugs but also for generics.
Biologic disease-modifying antirheumatic drugs (DMARDs) have become part of standard care for rheumatoid arthritis, and even the first biologics such as etanercept (Enbrel, approved in 1998) now cost upwards of $42,000 a year.
10
Multiple sclerosis patients face annual bills for Avonex (approved in 1996) of more than $62,000 a year, about on par with newer drugs like Tecfidera (approved in 2013).
11
These drugs are typically taken for long periods (if not for life). And for many patients, a big chunk of those costs are out-of-pocket, whether you have private insurance or Medicare.
Researchers at the University of California, San Francisco (UCSF) and the University of Hawaii conducted the first national investigation of stand-alone Medicare Part D coverage for DMARDs in RA compared with Medicare Advantage plans.
12
They looked at whether prior authorization was required, what was covered under specialty “tiers,” and co-payment amounts versus fixed-dollar co-pays in January 2013. The analysis looked at costs and coverage for nine conventional DMARDs (such as leflunomide and methotrexate) and nine biologic DMARDs (including adalimumab, certolizumab, etanercept, rituximab, and tocilizumab).
At the time of the study, several biologics were available only by intravenous infusion, usually given under physician supervision. Medicare Part D covers self-administered biologics dispensed by pharmacies.
During the initial period of an RA patient’s drug coverage under Part D, patients were expected to pay almost a third of the cost of biologics out-of-pocket.
12
That’s not a trivial amount. The study found that RA patients starting just a single biologic faced more than $2,700 in annual co-pays. The average monthly tab for DMARDs under standard Part D coverage was $835 per month. Medicare Advantage plans ran a little more, about $862 per month, but they covered more DMARDs. In contrast, the fixed co-pay for nonbiologic DMARDs was about $5 to $10 a month.
8
The least expensive biologic listed in the report was the older TNFα inhibitor
infliximab (Remicade)
, at around $270 per month;
anakinra (Kineret)
costs patients almost $3,000 a month. Not only that, but patients were almost always expected to have prior authorization—which can mean paying for extra office visits.
Then there’s the Medicare coverage gap known as the “donut hole,” which patients can tumble into by February or March of a given year. In the donut
hole, cost-sharing escalated to 45 percent until “catastrophic coverage” eligibility kicked in (usually by July).
8
After that, patients paid 5 percent of drug costs. But that’s six or seven months of higher costs—every year.
All this can affect whether patients take medications as prescribed. An earlier study of 1,100 adults with RA found that one in six decreased their medication dose because of cost.
Patients not covered by Medicare face a different problem.
Even if you have health insurance, there’s no guarantee that you’ll easily be able to get the medications your doctor prescribed. Insurance plans have devised “formularies” under which newer, more expensive medications are either not covered or covered at higher co-pays, depending on whether the plan is a low-cost basic plan or a “platinum” top-tier. Additionally, many insurers require what’s called “step therapy,” in which you must first try less-expensive therapies (like methotrexate) before you can be prescribed drugs such as biologicals. As a consequence, many autoimmune patients are finding themselves unable to obtain the best medications for their condition, says AARDA’s Virginia Ladd.
Many pharmaceutical companies have programs or discount cards to help patients obtain medications at low or no cost. Check whether your state has a State Pharmaceutical Assistance Program, which helps eligible patients obtain subsidies and drug discounts. (Sources are listed in
Appendix A
.) However, be aware that discount cards may not help if a medication is excluded or restricted by a formulary.
New studies are also underway to see whether reduced doses or other treatment regimens can be disease-effective as well as cost-effective.
According to the FDA, generic drugs are supposed to be chemically equivalent to brand-name medications. “Biosimilar” drugs are also becoming available, ostensibly with equivalent effects at lower costs.
However, AARDA cautions that biosimilars are not “generics” and may never be
identical
to the original approved branded product and may cause a negative immune reaction in people with autoimmune diseases. “Known as immunogenicity, this response can cause further disease and damage to the cells, tissues and organs of AD patients,” the AARDA statement explained.
13
There’s a lot you need to learn on your own. I had to learn how to adjust my insulin intake to match my natural appetite, which is something most
doctors don’t encourage diabetics to do. They want to get everyone on the same schedule, which makes it easier for them to explain. I had to find endocrinologists and doctors who understood, who would spend the time with me to work this out. No one told me to increase the amount of blood testing when I started on estrogen for my hot flashes. I knew about gestational diabetes and I thought there could be a reaction that could increase the need for insulin. But when my gynecologist prescribed estrogen, she never mentioned it and she knew I was a diabetic. I just started testing more on my own. I almost did that automatically. There’s a lot that you have to find out for yourself.M
ARY
K
AY
I was extremely lucky to find a gynecologist who worked closely with the MS center. She wanted me to take estrogen because she thought it would help my disease, even though there hadn’t been many clinical studies at the time. So the choice of a gynecologist can be critical.
A
NA
