Taking Lupus Medication
Drugs for lupus SLE can both help you with your symptoms, and create a whole other host of issues for you. It is important that you are well aware of all of the potential side effects of any medication before you start a course so you know what to expect and what symptoms to look out for.
For some, the side effects of medications are too strong to live with, and they decide that they ultimately outweigh the benefits. Modern medicine can sometimes seem like a miracle, but there are times when it is a downright nightmare.
With no cure for lupus in sight, we have to rely on these medications to keep us going. But sometimes the side effects bring on a whole new set of issues or health concerns to deal with.
Here are a few facts to know:
- Just as our symptoms can vary, certain medications work much better for some people than they do for others.
- There are treatments and medications that prevent organ damage, reduce joint damage, calm the immune system and reduce pain and swelling.
- There are a handful of typically prescribed drugs that are used to treat lupus, and each come with their own set of side effects.
Plaquenil
Also known as hydroxychloroquine, it was developed to prevent or treat malaria infections caused by mosquito bites. However, it is one of several antimalarial drugs that are also used to treat lupus.
The side effects of these drugs are itching, trouble sleeping, blurred vision, dizziness, headache, diarrhea, vomiting, nausea, and upset stomach.
These types of drugs have far-reaching side effects too. Those taking antimalarial drugs for lupus need to visit an eye doctor annually to monitor potential damage to the retina and lupus vision loss.
Additionally, as if the sun wasn’t enough of your foe as a lupus patient, Plaquenil can cause you to be even more hypersensitive to the sun’s rays, making a sunburn almost inevitable. For more serious possible side effects, consult your rheumatologist.
Corticosteroids
Corticosteroids, like prednisone, are commonly prescribed and they are typically manmade steroids that are used to reduce tenderness, swelling, and pain in different areas of the body.
These medications work by calming the immune system. They are not what you hear about professional sports and weightlifting athletes using. These types of corticosteroids are given to patients in the form of creams, liquids or pills.
Lupus can respond quickly to high doses of prednisone, but the side effects are unpleasant. Short-term side effects include mood swings, weight gain, increased appetite, heartburn, acne, and swelling of the face. They are temporary, meaning they go away once off the medication.
Long-term side effects include cataracts, muscle weakness, infections, artery damage, high blood pressure, damaged bones, and thinning hair or skin. Serious side effects of corticosteroids include congestive heart failure, depression, and ulcers.
Most people are not huge fans of steroid treatments, simply because the side effects are so brutal.
Steroids can help you over a hump when you’ve got a bad flare, but long-term usage is not for the faint of heart, especially if you are overly concerned with your appearance. Many women are reluctant to take this drug because of it is infamous for causing lupus weight gain.
I have heard some doctors say that prednisone doesn’t actually cause weight gain, but rather an increase in appetite that can be controlled, but I’m not sure this is the case. When I took the drug, like many, I packed on a few pounds and my face got rounder (developing a very round “moon face" when taking steroids is extremely common).
Prednisone can also cause a state of heightened alertness, depression, racing thoughts and anxiety as well as hyperactivity. Additionally, those on the drug for the long term may find themselves at an increased risk for osteoporosis.
Because the side effects are so common, most people would prefer to either take a steroid for a short amount of time, or avoid it altogether. Most doctors understand this and will work with you in order to help you find a solution that works best for you. Ultimately, though, sometimes you just have to bite the bullet and take the steroids, warts and all, in order to make it through a really rough flare.
Immunosuppressive Agents
You have probably heard of chemotherapy; typically it’s used to treat cancer, but it also works as an immunosuppressive drug to treat lupus. Typically this is for severe cases of lupus — if lupus is affecting vital organs, and when all other treatments have not worked well to control the disease.
Chemotherapy for lupus works because the drugs suppress a person’s immune system, which calm the lupus flare and prevents further damage to the organ under attack. But, as most know, these medications cause severe side effects, including increased risk of cancer, decreased fertility, bladder complications, hair loss, skin rash, vomiting and nausea.
Imuran
This is an immunosuppressant meant to keep a lupus patient’s hyperactive immune system in check. Imuran is much stronger than Plaquenil, and many doctors have questioned my original doctor’s reasoning for putting me on such an “aggressive" drug.
However, for me, the benefits far outweigh the risks and side effects associated with it, as it has decreased both my fatigue and flares dramatically. Simply put, it has made my life more livable.
Curiously, one of the more common side effects of Imuran is increased fatigue, which I have not experienced.
The reason Imuran is considered an “aggressive" drug is because more than one percent of patients, but less than 10 percent, will develop cancer as a result of prolonged Imuran use. However, the data to support that Imuran alone causes cancer is a little bit shaky at the moment.
Currently, it is believed that Imuran, when used with other immunosuppressants, puts one at an increased risk for cancer instead of simply using the drug alone. Additionally, Imuran can put you at risk for damage to your internal organs, so it is extremely important that you have your blood tested at regular intervals to ensure that the drug isn’t doing you any more harm than the lupus is already.
The only real side effect I have noticed from taking Imuran is an increased risk of developing warts, which often happens because your body’s defences are lowered. Because warts are a virus and are very contagious, if you share a shower with someone (especially someone with warts), it is important to wear waterproof footwear while bathing or to clean the shower before and after each use.
Imuran can also make you a bit more susceptible to colds and flus as they go around each year, but only if you are taking too much of it (as can be the case when you first start). If you find you are constantly catching something or are extremely tired, it may be time to lower your dosage as the medication may be suppressing your immune system too much.
The more common side effects of Imuran include: bleeding gums, blood in urine and stool, bleeding gums, black stool, swollen glands, mouth sores or ulcers (which is already common with lupus), sore throat, fever and chills, side pain, fatigue, weakness, chest pain and shortness of breath.
Benlysta
Benlysta is a biological treatment — a man-made antibody. It works by reducing certain cells in your immune system that can make lupus active.
The most common side effects in clinical trials were nausea, diarrhea, and fever. Patients also commonly experienced infusion reactions, so treatment with an antihistamine may be needed before each infusion.
Benlysta can cause serious side effects. Some of these side effects are dangerous, like heart problems, infections and mental health issues.
NSAIDs
These are non-steroidal anti-inflammatory drugs that can reduce pain and swelling of the muscle and joints. As long as lupus doesn’t affect the vital organs, NSAIDs can be used. Naproxen, ibuprofen and aspirin are all NSAIDs.
Side effects can be mild, like fluid retention, headache, drowsiness, heartburn and upset stomach. But there are a few increased risks, like serious issues with the kidneys, liver, and stomach bleeding.
Research is ongoing, and as a lupus patient, I try and keep updated about clinical trials and any new medication options or treatment tips that are available.
It is important to do your research before being put on a new medication and that you speak with your doctor about your concerns regarding the side effects before you begin a course of treatment. Sometimes, your doctor may prescribe other medications to counteract or help ease the side effects, making the drug more tolerable.
And although side effects are not fun, sometimes they are necessary in order to have a richer, fuller life, despite lupus.