“Actually, I do have some questions…”

Kat Macfarlane writes for Arthur’s Place: Finding out that you have rheumatoid arthritis (“RA”) can knock you off your feet-physically and emotionally. Your head is likely filled with concerns and confusion. But you’re not in it alone. You will find support from your GP, rheumatologist, specialist nurses, and other experts too, should you need them, such as physiotherapists and occupational therapists.

This support team will want to help you along each step of the journey ahead. From my experience, the more I talked to my team, told them how I was feeling, asked questions and generally got involved in making decisions about my treatment, the better the outcome for me has been, physically and emotionally.

During your first appointment with your rheumatologist, you will be asked if you have any questions. Maybe you do. Maybe you were so organized that you wrote them down ahead of time – always a good idea! But when you are first diagnosed it can be hard to know which questions to ask.

The questions below are ones I wished I’d asked early on in my RA journey. They will steer your treatment in a positive, proactive direction. With these questions, you’ll be communicating that you’re committed to your wellbeing and that you are keen to work alongside a medical team with the same level of commitment and determination.

1. What’s the long-term plan with respect to this new medication?

RA is a lifelong diagnosis, but your pain and symptoms will ebb and flow, and your medication dosage should be adjusted accordingly.

Each time your doctor prescribes a new medication, ask how long you will be on it. If the answer is something akin to “As long as it takes,” write yourself a note to follow up with questions about the new drug at six-month intervals.

It can help to get an indication of what is a realistic time scale to expect a response, as some medicines can take between three to six months before an expected response. Often, knowing not to expect too much too soon can make a positive difference to your emotional wellbeing.

It is particularly important with medicines such as Prednisone, a steroid commonly prescribed for RA, and one that has potentially long-term side effects, that you know how long to take it, how much to take and how to reduce the dose before stopping. Steroids should always be given with clear instructions and never stopped abruptly.

2. Here are my goals. Are they realistic?

Kat on her wedding day. Spot the Birkenstocks!

In my personal experience, I’ve found that rheumatologists approach RA with very specific goals: easing symptoms that cause pain and controlling the disease so as to avoid long-term joint damage. My goals are slightly different – they no longer include pain elimination at all costs. Instead, I care about mobility, and it has been important to tell my doctor about this personal choice.

I am doggedly resistant to medication that eliminates all pain but in return makes me dizzy, groggy or nauseous. In fact, I take nothing for “pain,” but am on a combination of medication known as “disease modifiers”. On days that my knee hurts, but I still remain limber enough to walk around with relative ease (and just the slightest limp), based on my personal goals, I’ll survive the day without adding a pain med to the mix.

Your rheumatologist should also know how you value the cost of a medication’s side effects. During a painful flare that hit a few weeks before my wedding, I consulted with my doctor about how to get through the flare without increasing my steroid intake. I was weary of the side effects. Having a face like a puffy balloon (one of the side effects) was not in my wedding day plans. In the end, with the help of my team, I devised a treatment plan that didn’t include steroids. It worked, and I walked down the aisle feeling as amazing as I’d hoped; ankle brace, Birkenstocks and all.

3. What’s your department’s policy regarding emergency appointments?

RA is not the kind of disease that requires frequent emergency treatment, but, if your knee swells to the point that you need to have it aspirated, or another emergency situation arises, you should be confident about how to get help. Ask your rheumatologist what you should do in an emergency; who to contact – GP, secretary or A&E? Rheumatology doctors are on call so are accessible via your GP or A&E within certain hours.

4. Can you put me in touch with patients my age?

An RA diagnosis is not easy. It’s essential to find people who understand what you’re going through, people you can laugh and cry with. Your doctor will likely know someone who, like you, wants to talk. Privacy laws prohibit doctors from sharing information about their patients. But, a doctor can always reach out to another patient and ask for permission to put the two of you in touch. Hand over your email address or phone number, and ask your doctor to pass it on.

Another way to meet others in your shoes is to share experiences online. Arthurs Place has a very friendly and supportive Facebook group, Arthur’s Place Social, which is a Closed group, which means that anything you write there stays private from your broader circle of friends and family and can be seen only by other members of the group. Simply request membership on Facebook. You can also follow Arthur’s Place, and many other arthritis-related communities, on Twitter and Facebook and make connections with people that way. (Find Arthur’s Place on Twitter, Arthur’s Place page on Facebook)

If online is not your thing, you may find that there are charitable organisations that run occasional group meetings locally to you too. Perhaps you could even start your own and let your rheumatology team know of your idea.

5. Can you refer me to a physiotherapist experienced with RA patients?

Your rheumatologist may recommend a combination of different medicines to help gain control of your RA. This makes good sense but ask about non-medicinal options too. Will your doctor help you combine drug therapies with physical therapy, for example?

My RA is polyarticular (affecting several joints), and has an annoying tendency of flaring across different joints in different ways. But if my elbow flares, I’m not necessarily keen to take a systemic medication-why subject my whole body to a drug with strong side effects if I can target the flare with physical therapy?

Over the past 15 years, physiotherapists have worked on my left elbow, my neck, my knees, my hips and my ankles. Every time I’ve seen a physiotherapist, it has helped. I’ve reclaimed flexibility in joints I’d given up on and learned how to exercise and build muscle strength without injuring my joints. A series of stretches I picked up in physiotherapy is part of my daily morning routine.

I’ve supplemented my physiotherapy with Pilates, which was created as a therapeutic practice for injured dancers. My Pilates instructors are geniuses at coming up with small adjustments to work around my joint problems. My joints remain relatively undamaged, even though RA and I are entering the 34th year of our relationship. I have Pilates to thank for this small miracle.

Chat about this in our Facebook group

6. Will you watch me walk/button my shirt/comb my hair?

Rheumatologists are very interested in blood test results. Over the course of the 30-plus years I’ve had RA, I’ve lost interest in knowing anything about my sedimentation rate (or you may recognise ESR). When I hear the phrase “sed rate,” I zone out. whenever my doctor tells me, “Your sed rate is consistent with someone with severe inflammation,” all I can think is, “No sh*t, doc.”

Obviously, it’s important for your doctor to know how your liver is functioning and what your sed rate is up to. Still, lab work should not be the only topic you discuss during your rheumatology appointment. If your knees are troubling you, ask your rheumatology team to watch you walk. If your elbows are swollen, show your team exactly how you can’t quite manage to button your shirt or comb your hair. This can help your rheumatology team adjust your treatment plan to take your specific predicaments into account.

7. How will the treatment you’ve chosen affect my reproductive health?

Many RA drugs cannot be taken during pregnancy. Others must be discontinued months before you try to get pregnant. If you are a young woman who may someday want to have a child or a man with active sex life, you must know what effect a drug will have on your reproductive health, or, for men, your partner’s if it’s possible you might get her pregnant, and be able to plan accordingly.

Certain drugs that cannot be taken during pregnancy cause birth defects. As a result, if you are on such a medication, you must be ready to protect yourself from getting pregnant. An unplanned pregnancy while on Methotrexate, for example, brings with it a very serious set of concerns. As someone newly diagnosed with RA, both men, and women, you will need information about birth control. Your RA meds may weaken the effect of your chosen contraceptive method. Ask what you must do to adequately protect yourself from a pregnancy you’re not ready for.

8. Should I change my diet?

An unhealthy weight puts an unhealthy strain on RA-affected joints. Managing your weight should be a key aspect of your RA treatment plan. Get well informed about your BMI as this knowledge can help you know if you are within a healthy weight range.

If the BMI results give you cause for concern ask your doctor to review your current diet and see if there are any simple changes you can make to improve your body’s function. I’ve reduced my caffeine intake, no longer drink cocktails (sticking instead to wine) and try, though I often fail, to limit my carb consumption. All of these changes have helped. But we are all individuals so if in doubt ask your doctor what might work for you.

Katherine Macfarlane is 34 and teaches civil rights litigation and legal writing at LSU Law Center in Louisiana. She was diagnosed with JRA and iritis at age one and developed glaucoma in her twenties. Though she occasionally feels trapped in the body of an 80-year-old, she remains young at heart.