Living with Lupus

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So you got diagnosed with Lupus, what now?

As if accepting the sad news of a lupus diagnosis wasn’t hard enough, now you also have to learn how to live with the diagnosis and take potential symptoms, pain and adjustments into consideration. It can be a big adjustment.

The good thing about getting a diagnosis is that you actually got a diagnosis. Believe it or not, but due to the fact that lupus hides in many different diseases, many wait long and painful years. Now that you have a diagnosis, it is important o see a doctor who can put together a treatment plan and follow your disease pathway. If you haven’t already seen a doctor, we suggest that you do. Doctors can prescribe medications that can maintain your lupus and potentially allow you to live pain free.

Many lupus patients ask for education around what they themselves can do to limit the pain and symptoms of lupus. It is important to note that lifestyle, diet and other outside influences can have a big impact on your health. Eating healthy, avoiding inflammation-inducing produce, resisting smoking, and getting plenty of sleep and exercise can be key contributors to how you feel.

There are lots of information on the internet. Look up any of the above mentioned triggers. We have decided to show you here why sleeping is utmost important especially if you have an autoimmune illness.


Another thing that is really important is breathing. I know it sounds crazy. How can breathing (which we do automatically) have anything to do with my illness? Well, breathing correctly can impact our lungs, our digestive system, and our overall health. It is important to breathe correctly to ensure the blood is circulating appropriately in order to keep us healthy. In fact, breathing through your nose (not mouth) can enable you to live longer and stronger lives.


Prescription Adherence – and why it matters

Have you ever had one of those days where you didn’t take your medicine and you didn’t feel anything different from all the other days when you actually took it? Or what about that one time, you went on vacation and forgot to bring your pillbox and after a week you still felt absolutely fine? I know… me, too. At first you think “Oops!” then “Thank goodness I got away with it without any problems”! However, once you have had several similar situations it makes you wonder if you really need the medications, doesn’t it?

Well…. Here is the thing: your doctor prescribes medication to manage your lupus and prevent and reduce symptoms and flares. The medication can stay in your body for a long time even after you stop taking it, which makes it hard to see a difference if you stop taking it for a day or two.

What is noteworthy, though, is that your doctor typically doesn’t take into account the cost, difficulty, or pains of getting the suggested therapy. The doctor’s sole objective is to make sure you get the best treatment for your condition. In order for this treatment to be effective, you must be adherent to the medical and health advice given including taking the medication as prescribed.

Prescription adherence can be unintentional or intentional. Either way, poor adherence to the therapeutic regimen that the doctor deems best can especially be a big problem to lupus patients and others with chronic diseases. The first and most obvious fear of lack of patient adherence is the increased risk of flares and the painful symptoms that usually follow. Morbidity and hospitalizations are additional concerns, as is your overall quality of life. Nevertheless, up to 76% of lupus patients do not take their drugs as prescribed on a consistent basis.[i]

When you do not take your medication as directed, you are not getting the appropriate treatment needed to control your illness. In fact, if your doctor doesn’t know about your inability to keep up with the prescribed treatment, he or she may incorrectly interpret your disease manifestations as a lack of response and up your medications unnecessarily. This could potentially be dangerous to your health. And yet we are willing to take our chances far too often.

There are as many reasons as there are patients for why we do not take our medication as it is prescribed 100% of the time. We may truly forget now and again, but sometimes we make the conscious decision because… perhaps…. we are angry that we are sick, or we are worried about possible side effects, or maybe we lost some of our prescriptions and the insurance company won’t let us have more until the end of the month. Perhaps we stretch our drugs merely because we cannot afford the medication. All of it is hindering prescription adherence and may have serious circumstances.

What most of us do not know is that there is a lot of help available to those who cannot afford their medication.

The medical industry spends fortunes creating drugs for our conditions but they also spend a large amount of money developing ways to help patients in need. There are various programs that assist with getting the therapy we need for the price we can afford. Take for example ScriptSave® WellRx ( and their mobile app, which allows you to not only search for the pharmacies closest to you but also compares the ever-changing drug costs by medication name, helping you to get the best price available. Even better, they have a savings card that allows you to get your prescriptions with up to 80% worth of savings. There are no enrollment fees and no limits on use. You don’t even have to enter any credit or debit card information. It is brilliant!

Savings programs like ScriptSave WellRx help thousands of patients every month who would otherwise be abandoning their medication due to financial hardship. Money should not be the determining factor of whether or not you are able to take your medication as prescribed. Taking your medication is one of the most important roles you have in your healthcare as it is likely to improve your outcomes and may offer higher lifetime patient value. Who wants to suffer when you can just take your medication as prescribed by your doctor?

Remember, even those who are underinsured and find it challenging to pay the co-pays mandated by the health insurance can use this free savings card (accepted at over 60,000 retail and mail order pharmacies in the US) and start benefitting from these amazing savings immediately. In fact, sometimes patients may gain more in cost savings if they use the savings card rather than using their health insurance (as health insurance can have non-negotiable co-pays that may prevent you from affording your medications). Pharmacies are often unable to tell you this, so do your research. It is worth noting that you can always ask your pharmacist to compare the cost of the medications with the free savings plan vs. health insurance. That way you don’t have to guess what makes most financial sense.

Check out the ScriptSave WellRx website and mobile app and see how much you can save. The rest is up to you but please… please… take your medicine as prescribed.




Why family and friends don’t always relate….

Funny enough… Most people think that if you are really sick, you should be able to see it. They expect a rash, hair loss or a big scar – something that they can look at and register that you are sick. However, with invisible diseases (such as lupus) many times there is nothing to show. Your joints may hurt to the point where pulling a sheet over your body hurts. Perhaps your infection or inflammation has taken over your body, but no one can tell just by looking at you. Perhaps your liver or kidney is shutting down and you feel awful but no one sees it.

Many patients are hurt and sometimes angry when they are at their weakest and met with comments like: “BUT YOU DON’T LOOK SICK”. Others report being called lazy, boring, liars, and worse. This is why it is important for us to educate our co-workers, friends and family members – and anyone else who cares to listen. We must bring awareness to the fact that hurting comes in many shapes and forms and may not be visible to anyone.

We often discuss how to address our loved ones who do not understand. It can be a difficult but necessary discussion.

To learn more about this and other lupus subject matters, the physical and emotional side of living with lupus AND how to maintain a positive attitude and staying motivated, please join our online and face-to-face support groups.