Do you have any kidney problems? Or has a doctor told you that your kidneys are not working properly? Sometimes, when you have to have a scan like a Magnetic Resonance Imaging (MRI), you need to be a little careful about the special dye used. Today, we are going to talk about a condition that can occur at such times, but is very rare now, but it is worth knowing about. This is called Nephrogenic Systemic Fibrosis (NSF).
What is this NSF (Nephrogenic Systemic Fibrosis)? Simply put...
Simply put, Nephrogenic Systemic Fibrosis (NSF) is a very rare condition. It mainly occurs in people with kidney disease, especially those with impaired kidney function. This condition can only occur after someone has been given gadolinium-based contrast agents (GBCAs) during a scan, such as an MRI, to make the images clearer.
Think about it, our kidneys are the ones that filter out the unwanted things in our body and get them out with urine. So, when these so-called ``GBCAs'' enter the body of someone whose kidneys are not working properly, they are not properly removed from the body. That's when the risk of NSF arises.
Do you know what causes NSF? Your skin can become thick, tight, swollen, and itchy. Sometimes, even joints can become stiff and locked in one position. This is called ``joint contracture''. Not only that, but in some people, this condition can also affect organs inside the body, such as the chest muscles, heart, and lungs. What happens is that the tissues around those organs also thicken and become tight.
The most important thing is that, once NSF occurs, there is currently no clear treatment to stop or reverse it.
But, don't worry! Even the US Food & Drug Administration (FDA) has strongly advised against the use of some older GBCAs in kidney patients. The newer GBCAs on the market have not been reported to cause NSF in kidney patients. That's a big relief.
How common is NSF now?
In fact, it is very, very rare now. In fact, there have been no new cases of NSF reported in over 10 years. After 2006, when the medical community became aware of the link between these ``(GBCAs)`` and kidney disease, the number of reports of this disease decreased significantly.
How does NSF develop? What are the symptoms?
Symptoms of NSF can appear the same day the gadolinium-containing contrast agents (GBCAs) are injected into the body. Or, they can appear months later. In one study, about 50% of people developed symptoms within 12 days.
The main symptoms that can be seen are:
- Swelling, tightness, and thickening of the skin: This most commonly affects areas like the arms, legs, and chest and abdomen. The face is less commonly affected.
- Dark spots or bumps on the skin: Sometimes the skin can become rough, like an orange peel.
- Skin feeling itchy, inflamed, or painful.
- The inability to move the limbs and joints normally due to thickening and swelling of the skin.
For some people, these symptoms can also affect the body's internal organs and muscles. Here are some things you might experience:
- Severe muscle weakness.
- Due to muscle tightness, the limbs cannot be properly bent or extended (i.e., the range of motion is reduced).
If this fibrosis, or thickening of tissue, progresses further, it can lead to the formation of hard deposits in the muscles, lungs, esophagus, eyes, and even the heart. This can impair the function of these organs. This can lead to long-term, permanent disabilities and, in some cases, even death.
What is the main cause of NSF?
NSF is most likely caused by exposure to the aforementioned `(gadolinium-based contrast agents - GBCAs)`. This chemical called gadolinium is used to clarify images in `(MRI)` scans. It is still not clear exactly how gadolinium causes NSF. However, it is clear that there is a link between kidney disease and `(GBCAs)`. It has also been shown that the risk increases if the amount of gadolinium administered to the body is high, or if certain types of `(GBCAs)` are used.
NSF is most common in people with chronic kidney disease (CKD) and those on dialysis due to kidney failure.
But, remember, no new NSF cases have been reported in almost 15 years!
This is because the current GBCAs are more stable and less toxic. Also, the use of gadolinium has been restricted to people with kidney disease. Even the FDA recommends that people with kidney disease or kidney problems not use the older GBCAs.
Who is most likely to develop this? (Risk Factors)
The main risk factor for developing NSF is kidney disease or kidney dysfunction. This includes having had previous kidney surgery, having had a kidney transplant, or having only one kidney. Also, if a person with kidney disease has other conditions, such as blood clotting problems or infections, the risk of NSF may be slightly higher.
However, doctors are now more aware of the potential harm that older GBCAs can cause in people with reduced kidney function. So, with the safer methods available today, your risk of developing this condition is much lower.
What are the possible complications of NSF?
The complications of NSF can be very serious and sometimes fatal. The first sign is a thickening or thickening of the skin. However, as the condition worsens, this stiffness can also affect the organs and muscles inside the body. For example, your muscles and joints may become so stiff that you can’t move them, making it impossible to walk. If NSF affects the lungs or heart, it can cause difficulty breathing or impair the heart’s ability to pump blood.
How is this disease accurately diagnosed? (Diagnosis)
The only way to know for sure if you have NSF is to have a skin biopsy. This involves a doctor taking a small sample of your skin and sending it to a lab for analysis. However, a doctor will only order this test if, after taking your medical history and performing a physical exam, they have reasonable suspicion that you may have NSF.
What are the treatments for NSF?
In fact, there are currently no specific treatments approved for NSF. Because the disease is so rare, research into treatments is limited. However, there are a few treatments that have been reported to provide some relief for some NSF patients:
- After an MRI, dialysis can remove the gadolinium from the body. This may be helpful for people with chronic kidney disease. However, there is no evidence that this will completely stop the development of NSF.
- Physical therapy can help maintain flexibility and movement in joints.
- Kidney transplants are an option that some NSF patients may consider.
If you have kidney disease, it is best to avoid exposure to gadolinium. However, sometimes gadolinium may be necessary to get the best images from an MRI. In such cases, doctors must weigh the benefits of the MRI against the risks of exposure to gadolinium. If you have kidney problems and your doctor orders an MRI with a dye, be sure to ask your doctor if you are at risk for NSF.
Are there ways to avoid NSF? (Prevention)
The best way to prevent NSF is to avoid using older GBCAs in people with kidney disease. Newer GBCAs are safer and less toxic to kidney patients.
The FDA recommends that people with certain kidney conditions not use gadolinium-containing dyes unless there is no other option.
For people with normal kidney function, there does not appear to be any risk from using GBCAs.
What is the mortality rate due to NSF?
Before 2019, the FDA had reported 3,094 cases of NSF and 742 related deaths. However, as previously mentioned, no new cases have been reported in over 10 years. The main reason for this is that the FDA and the medical community are aware of the effects of GBCAs on kidney patients.
When should we seek medical advice?
If you have kidney disease and experience any of the following symptoms, see a doctor immediately as they could be a sign of NSF:
- Skin tightening or thickening.
- Itchy or inflamed skin.
- Red or dark spots on the skin.
With the current safety protocols, the chance of you being diagnosed with NSF is very low. However, if you have kidney disease and need to have an MRI, talk to your doctor about NSF and the risks to you. Even though the newer GBCAs are not as toxic and appear to be safe, it is always a good idea to share your health history with your doctor and discuss the risks.
Take-Home Message
Okay, so now you have a better understanding of what we've been talking about, NSF. Let's recap the most important things:
- NSF is a very rare disease, especially in people with kidney disease, and can be caused by some older MRI contrast agents.
- There are hardly any new cases of NSF reported now. This is due to the use of safer new contrast agents and the awareness of doctors.
- The main symptoms are skin thickening, tightness, itching, and joint problems.
- If you have kidney disease, be sure to talk to your doctor about the dyes used and the risk of NSF before having an MRI.
- There's nothing to worry about, because with current methods, this risk is very low. However, it's always worth being aware.
Taking care of your health is the most important thing. If you have any questions or concerns, never delay seeking medical advice.
` Nephrogenic systemic fibrosis, kidney disease, MRI scan, gadolinium, skin diseases, GBCAs, rare diseases
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