If you’ve been diagnosed with an autoimmune disease – or are waiting for a diagnosis – there are seven questions you should ask your rheumatologist.
It’s been a year and half since I was diagnosed with dermatomyositis, a rare autoimmune condition that causes fatigue, inflammation, severe muscle weakness and skin rashes. By the time I was diagnosed I had spent two weeks in the hospital – including a couple of days in intensive care.
I was in no condition physically or mentally to ask the right questions. Scratch that. I didn’t even know what the right questions were. But I know what they are now, and I want to share them with you. Because asking these questions will make you a partner in your healthcare – not just a “patient”.
Remember these two rules:
#1 Knowledge is power.
#2 You are in control of your healthcare decisions.
If you’re seeking a diagnosis, or have already been diagnosed with an autoimmune disorder, you’ve learned that much of your care will be provided by a rheumatologist. A rheumatologist is a physician specializing in the treatment of diseases that cause inflammation. These include musculoskeletal disease and autoimmune disorders. They are diseases can affect the joints, muscles, and bones.
The medical team that treated me chose my rheumatologist for me. I assumed (mistake #1) that this physician specialized in my specific disease. But remember – autoimmune disorders are complex. There are more than 100 subtypes. They are difficult to diagnose, and it can take time to find an effective treatment. What works for me might not work for you.
There are seven questions I wish I would have asked my rheumatologist early on in my diagnosis.
Want to know how many of these questions I asked when I started seeing my new doctor! One. Lousy. Question. I asked the obvious question: When will I feel better? I encourage you to take someone with you who can help you ask all of the questions you have – and who is willing to take notes so that you can refer back to them.
1. Do you specialize in treating patients with this condition?
Don’t panic if the answer isn’t a resounding “yes”. If your condition is extremely rare, like mine, where there are about 1,600 new cases a year, it may be challenging to find a specialist in your area. But your rheumatologist should have an understanding of the disease and its treatments.
Since autoimmune diseases share some common traits – like inflammation – treatments are often similar. But each autoimmune condition is unique in other ways, and you want to feel confident that your rheumatologist is knowledgeable about the specifics of your disease – or has access to other specialists within the department who are.
If you decide that you want a rheumatologist with more expertise with your specific condition, don’t be afraid to ask! Sometimes even getting a consultation with another doctor can give you peace of mind and help you make the right decision. This is an important decision! You’ll have a long-term relationship with your rheumatologist.
2. Where can I learn more about my condition?
Think about what you want to know so that you can be clear with your doctor. Do you want basic information that explains (without the big $10 words!) the disease and common treatments? Do you want to know which institutions specialize in your condition? Would you prefer to read about it or watch a video?
Sure, you can search the internet, but not all information is created equal. And do you really want to try to understand abstracts from medical journals? I’ve gone down that proverbial rabbit hole (mistake #2). It can be overwhelming and frightening.
3. What are the treatment options and side effects?
You always have a choice – even if one isn’t presented to you. Standard treatments for autoimmune disease often include steroids to reduce inflammation, as well as biologics and other immune-suppressing drugs. All drugs have side effects and risks. Ask about options. Bear in mind that there may be some therapies that your insurance company won’t readily approve, so your rheumatologist will need to make a case for coverage.
You know those commercials that make it look like X disease is a pocketful of sunshine because of Y medication? The best part is always at the end where the voice over quickly lists about a dozen different side effects, usually ranging from nasal congestion to death. For real.
I’m here to tell you that sometimes the medication IS worse than the disease. It’s a risk versus benefit situation, and you want to be informed so that you can make the best decision for you.
4. When can I expect to start seeing results from my treatment?
Autoimmune diseases don’t play fair. They tend to develop slowly and quietly, gradually progressing until you realize that instead of noticing when you’re not feeling well, you only notice those rare occasions when you are feeling okay.
The treatments tend to work much the same way. Don’t expect the quick fix of an antibiotic where you’re feeling like new in a week or less. Medications used to treat autoimmune disorders can take months (yep, MONTHS) before you begin to see progress. And the path to recovery isn’t linear. There are bad days followed by good days followed by worse days followed by better days. Really.
5. What can I do to manage my symptoms?
There will be some variation based on your specific disease, but beyond medications there will be steps you can take to manage how you feel. For my condition, doctors recommend physical therapy to help improve and maintain mobility and to rebuild weakened muscles.
Diet can also play an important role in managing your symptoms. Many people have found success with an anti-inflammatory diet. Ask your rheumatologist what he or she recommends for your specific autoimmune disease. Over time, you’ll also learn what works for you.
6. Are there new treatments or therapies that are being researched?
Your doctor should be able to tell you what’s on the horizon. Sometimes certain drugs that were originally developed and prescribed for a different purpose are found to be effective for specific autoimmune diseases and are used “off label” to treat them. You may find that you will have more options for treatments in the future.
7. What other types of specialists do I need to see?
Remember, autoimmune diseases are systemic. They can affect many systems and organs. Be prepared to see a team of various doctors. The specialties will depend upon your condition. My team includes a neurologist cardiologist, dermatologist and pulmonologist. Whew.
In an ideal world they will work as a team – but we don’t live in an ideal world, and you will want to be diligent about making sure that you’re proactive in making appointments to see them, and in making sure that each specialist is aware of all of the conditions you have as well as potential interactions of medications you’re taking.
It’s a lot – I know. But you’ve got this! My Resources page will connect you to some helpful sources of information and support. It’s a journey, isn’t it? And it’s easier if we take it together.
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