Your doctor has just given you a diagnosis of rheumatoid arthritis. On the one hand, you're relieved to finally have an answer, but on the other, your head is spinning. The next step is to find out more about your disease, but you probably don't know what you need to know.
Here are 10 questions to ask your doctor. His or her answers should help you get started in living with the disease.
1. Do I have to take medication?
Along with the diagnosis, your rheumatologist will provide you with a prescription for medication to suppress your RA. Treating your RA is important it helps prevent the damage the disease can do to joints. This protects your mobility and helps you live as normal a life as possible. New medications make it more likely that your symptoms will go into remission.
2. Can I adjust my medication schedule if I'm sick or have a big RA flare?
Many RA meds are immunosuppressants and are taken on a schedule, such as every week, every two weeks or once a month. Talk to your doctor about what to do if you're not feeling well or have been exposed to someone who is sick. Some doctors will recommend that you postpone or skip your medication; others may tell you to go ahead unless you have a fever. Though side effects from meds—such as fatigue and queasiness—can be managed, if you have a flare the day after you normally take your meds, you may want to check with your doctor to see if you can adjust the schedule to avoid those side effects.
3. How careful do I have to be about infection?
Some RA meds, such as methotrexate and the biologics, suppress the immune system, which can make you more vulnerable to infection. Managing this risk is usually a matter of paying more attention avoid people who have contagious illnesses, such as colds and the flu; wash your hands often, and avoid touching public surfaces (use a pen for ATM and pin pad buttons, wear gloves when you pump gas, etc.). Although serious infections are rare, they do happen. Ask your doctor what symptoms may indicate that you need to go to urgent care or an emergency room.
4. What kind of vaccines should I get?
Vaccines can be an important tool to help you stay healthy. There are three vaccines that anyone with RA should get: a flu shot, the pneumonia vaccine and a tetanus shot.Making sure that all three are current will go a long way toward keeping you protected. It's important to note, however, that "live" vaccines should not be given to people who take biologics. These are vaccines that contain a version of a living microbe that has been weakened in the lab. Also, if you are about to start a biologic, such as Enbrel, many doctors recommend that you first get the shingles vaccine. But it's important that you don't get that vaccination after starting biologics.
5. What do I do if I have a bad flare?
Flares, or periods where RA gets more active, are part of living with disease. Even in remission, a flare can pop up. Smaller flares usually can be managed by rest, taking extra pain meds and using other pain-management techniques. However, if your flare gets worse or doesn't go away, your doctor may be able to help with a booster pack of prednisone, for example. An extended flare may also be an indication that your medication is not working as it should and needs adjustment. Don't hesitate to contact your rheumatologist between appointments if you need help.
6. How do I manage pain?
Learning to cope with pain is an important part of living well with RA. The goal of treatment is to go into remission and therefore not have any pain. However, if you're not in remission or have damage from your disease, you may experience pain occasionally or on a regular basis. If your rheumatologist doesn't treat pain, your family doctor may be a good source for pain control. You can also ask for a referral to a pain-management specialist.
7. What can I do to manage my fatigue?
There are times when the fatigue associated with RA can be harder to deal with than the pain. You can use a number of techniques to manage fatigue and maintain energy. If you have high levels of fatigue, it may also be an indication that your RA is not well controlled. If that's the case, ask your rheumatologist to check for increased disease activity.
8. Can I drink alcohol?
RA meds may affect whether you can drink alcohol. Methotrexate and Arava are both metabolized through the liver, which means you need to be very cautious with alcohol. Some rheumatologists recommend that you don't drink at all while on these medications; others will allow an occasional glass of wine. Always ask your doctor if there are special precautions you should take with any medication.
9. What about sex?
There are no reasons you shouldn't have a healthy sex life with RA. However, you should be careful about putting strain on certain joints, as it can cause a flare. If you have RA in your neck, be careful not to hyperextend. Also, if you are on Methotrexate or Arava, do not get pregnant, as both these medications can cause severe birth defects. If you do want to conceive, talk to your rheumatologist about how to ensure the medication is out of your system before you get pregnant.
10. Can I exercise?
Physical activity is an important part of staying mobile and can help strengthen muscles to support your joints. It's important, however, to choose a form of exercise that doesn't strain your joints. Ask your rheumatologist if you should be careful with any particular joints. You may also ask for a referral for a physical therapist who can help put together an exercise program that will work for you.
Lene Andersen is the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain. Her new book is 7 Facets: A Meditation on Pain.