Nutrition/Exercise
Can you follow a vegetarian or Vegan diet even if you have a rheumatic disease?
Yes, it is fine to follow a vegetarian or vegan diet. The important thing is to remember to eat a variety of healthy plant-based foods. If you avoid all animal products, then you should take a Vitamin B12 supplement or a multivitamin containing Vitamin B12 as this is a nutrient that can only be found in animal products but is still very important for your body
Is it normal for your periods to become irregular when your Rheumatic disease is flaring?
Yes, it is very normal for your cycle to go a little haywire when your disease is flaring. There are no great methods to return it immediately to normal and typically this just requires time. The best way to keep your cycle regular is to keep your rheumatic disease under control. Continue to take your medications and reach out to your Rheumatologist if you are worried you may be having symptoms of a disease flare.
My friends all want to go to the local tanning salon so we can look fabulous for spring break. I won’t actually be sitting outside in the sun trying to get tan and just using one of the beds instead. Is that okay to do with my Rheumatic disease
It in part depends on your disease. For those of you with lupus, MCTD, or JDM tanning beds are never safe. The bulbs used in tanning beds produce UV light, the same type of light seen with sun exposure. UV light can cause skin lesions to flare, make existing lesions worse, or even activate internal flares of your disease. Instead, talk to your friends about potentially a spray tan or just embracing not being the tannest people on spring break.
What are some tips and tricks to help stay on top of medications without mom and dad’s help?
Can you ask for special accommodations at school for my Rheumatic disease
Yes Register with the school accessibility office.
Ask for special housing if you need it. You may want to ask for a room that is within walking distance of the main campus so you can get to your classes without walking too far. (If that can't be arranged, the university should get you a room near public transport.) These things are requirements under the Americans With Disabilities Act, so contact the school's disability services if you're having trouble getting your needs met.
What kind of foods should you avoid if you are on high dose prednisone or have kidney involvement from your disease? Can you still go out to eat with friends?
When you are on prednisone or have kidney disease, it is important to follow a low sodium diet. Yes, you can and should still go out to eat with your friends. However, it will be important to be open and honest with them about potential dietary limitations. With all the added sodium, maybe the local pizza joint isn’t the best option. That does not mean you have to avoid pizza all together. A fun alternative could be making pizzas from scratch at home where you can help limit the sodium that goes into the recipe. When you do go out to a restaurant, do not be afraid to ask about lower-sodium options on the menus or to ask to have no salt added to your food.
Help! The condom broke last night and you don’t want to risk becoming pregnant. Can you take Plan B with your Rheumatic Disease?
Accidents happen. All emergency contraception options are fortunately very safe for women with a rheumatic disease, even women at higher risk for blood clots. You typically do not need a prescription for these medications and can find them at your local pharmacy or even off Amazon. If you are ever worried though about emergency contraception, you can always call your rheumatologist who can talk these options through with you.
You are on Methotrexate for your disease. However, you still want to go out with my friends to the bars or attend house parties in college. What should you do?
Unfortunately, both alcohol and methotrexate can affect the liver and mixing them together can cause irreversible liver damage. That does not mean you cannot go out to the bars or parties with your friends. Remember you do not need alcohol to still have a good time. Bars will still offer plenty of non-alcoholic options. If feeling pressured, try to carry a bottle containing your own beverage with you. People do not need to know what is actually in it. Non-alcoholic mocktails are still a great way to feel like part of the party without actually drinking.
If you feel like you still really want to drink alcohol, then talk to your rheumatologist. There may be other medication options that you could switch to that would allow you to drink some alcohol.
What are some strategies that can help manage stress levels and possibly prevent disease flares?
Stress is a normal part of life. Trying to anticipate what may cause stress and how to manage symptoms can be difficult but not impossible by any means.
What are some ways you can manage all of your health information in case you need to see the college health department or a new doctor while you are at school?
What are some ways to get routine active while away at college if you don't enjoy playing sports or are having bad arthritis pain?
Staying active is very important and can help improve many disease symptoms. If your disease is making it hard to stay involved with one sport or activity that uses your hands, maybe look into an activity that is more lower extremity based and vice versa. If running causes too much strain, then lower impact activities such as swimming, cycling, or yoga can be great alternatives. Remember, you do not have to be involved in an organized sport to stay active and group classes at your college gym, local running groups, even hikes with friends are a great way to maintain that social connection while still increasing your activity level.
You read about some of the possible side effects of the medications your Rheumatologist wants to start you on. One of the side effects listed is "infertility." If that possibility scares you, what is the best next thing to do?
Talk to your Rheumatologist! While usually long-term infertility is uncommon with our medications, in rare circumstances it can happen. However, we do have things that can help potentially prevent it. Sometimes we can even discuss other medication options we could use to avoid that possibility all together. An open conversation is always warranted, but please always talk to us over avoiding a medication all together.
Are there any reasons to avoid getting a new body piercing or tattoo?
The best answer is definitely maybe. The risks associated with a tattoo or piercing will be tied closely to your medications and your disease activity. When your disease is flaring, particularly when you are having significant skin symptoms, it is often a bad time to induce further damage to the skin with a tattoo. When you are on medications that more severely suppress your immune system such as Rituximab, Cytoxan, or high dose Prednisone, it may also be a bad time as it may put you at higher risk of infection or poor healing. That does not mean you can never get a tattoo or piercing done. It is important to notify your Rheumatologist who can help guide you on the best timing and any associated risk factors
Your disease is flaring and making you feel more frustrated and depressed. Who should you ask for help with these emotions, especially being away from family at school?
Never be afraid to talk to your college advisor, your professors, and the staff at your accessibility office. Everyone at college is there for one purpose --- to help you succeed. They want students to reach out and will do everything they can to provide support. May campuses have mental health professionals available through the campus health center. These professionals can be great resources to help you work through these emotions.
Do I need to tell my employer about my Rheumatic disease?
Legally, you are not required to disclose your health condition to your employer, but remember that people with long-term health problems are protected by the Americans with Disabilities Act (ADA). The ADA says that employers will offer accommodations to help a person to meet the requirements for their job.
Will antioxidants help my Rheumatic disease?
Maybe. Antioxidants may potentially protect against cell damage. However, their role in Rheumatic diseases has not been well studied. Instead of spending large amounts of money on different antioxidant supplements, the best thing to do would be to work in foods high in antioxidants into your diet such as fruits, vegetables, and whole grains. Raisins, blueberries, blackberries, beets, and red peppers are great options. Kale and spinach are also good choices, but both are also rich in Vitamin K which can interfere with a blood thinner called Warfarin which you may be on if you have ever had a blood clot
What do you do with your medications if you just found out you were pregnant?
Notify your Rheumatologist. While some medications may be problematic for a developing fetus, others are not only safe but also important to continue during pregnancy. It is okay if you hold all of your medications for a couple of days until you hear from your doctor, but the best next step is to try to get in contact with your Rheumatologist who can help guide you and potentially expedite an appointment with an OB/GYN.
Everyone says that vaping is much better for you than actual cigarettes. Are there any reasons to avoid it with your disease?
Vaping can still be very bad for your rheumatic disease and is not something we recommend. The nicotine found in cigarettes is typically the product still used with vaping. Research has shown that nicotine can cause disease flares as well as limit the ability of some of your medications to help with your symptoms.
What are some ways to connect with people who may know what you are going through with your chronic disease
The great thing about the internet these days is that there are more and more ways to connect with other rheumatic disease warriors. There are many Facebook pages, Instagram, Tic-Toks, and other social media groups you can join. Look for Rheumatology support groups. The Lupus Foundation of America has many local chapters and can help connect you with other lupus warriors or lupus support groups. The Arthritis foundation is another great space for anyone with a rheumatic disease. Lupus Connect is a new online community for individuals with lupus and their loved ones. You can join at lupusconnect.inspire.com
Do I need to follow an anti-inflammatory diet?
Despite the numerous claims on the internet and in various books, there is no special “diet” for people with a rheumatic disease. There is no list of exactly what you should eat, drink, or avoid to lessen the symptoms of your disease or make it go away. When living with a rheumatic disease, the most important thing is fortunately the same thing that should apply to all of us: eat a nutritious, well-balanced, and varied diet. Try to include plenty of fruits and vegetables, whole grains, moderate amounts of freshly cooked lean meats and poultry, and healthy fats. Try to avoid or at least limit foods that contain large amounts of saturated fat, hydrogenated fats, trans fats, excessive sugar, and large amounts of sodium. Drink plenty of water as long as you do not have a fluid restriction.
Who should you talk to about birth control options and can your disease affect what those options may be?
Everyone with a Rheumatic disease can find a safe, effective birth control method. Depending on your disease symptoms, some birth controls may be safer than others. Therefore, your Rheumatologist is often the best person to first ask when it comes to birth control questions as not every doctor is familiar with how your disease may affect birth control.
There are lots of advertisements or naturopathic advisors that recommend new supplements to help with inflammation. Are these okay to take?
Many "natural" supplements do not have any medical trials showing proven benefits with Rheumatic Diseases. These supplements are also typically not regulated by the FDA and thus may or may not always contain what they list as ingredients. They also may contain unknown quantities of ingredients. While most are not harmful and okay to still try, the benefit remains questionable and more importantly some products may interfere with your medications. Before starting any new over the counter supplement, you should speak with your Rheumatologist.
Are there any good free Apps to help you manage your disease?
SELF (Strategies to Embrace Living with Lupus Fearlessly
What options do you have if your disease is making it so you are unable to work, even temporarily?