Individuals diagnosed with Ehlers-Danlos syndrome (EDS) are typically advised to stay off certain drugs due to the possibility of undesirable outcomes. Following subsections offer a detailed look at the condition, in addition to offering answers to a commonly asked question – what drugs should you avoid with Ehlers-Danlos syndrome? This will help patients and caregivers take the right kind of precautions and also ensure that interacting medications are avoided.
What is Ehlers-Danlos syndrome?
This refers to a group of genetic disorders that affect the connective tissues in the body. Connective tissues provide support to the skin, bones, blood vessels, and other organs and structures. Symptoms of EDS can vary widely and may include:
- Joint hypermobility (joints that move beyond the normal range)
- Skin that is easily bruised, stretched, or scarred
- Fragile skin and blood vessels
- Chronic pain
- Dislocations or subluxations (partial dislocations) of joints
- Scoliosis (curvature of the spine)
- Mitral valve prolapse (a heart condition)
- Intestinal or bladder diverticula (small pouches that form in the walls of these organs)
There are several different types of EDS, each with its own set of symptoms and severity. Some types are caused by mutations in specific genes, while others are caused by unknown factors. The condition is a rare disorder and is known to affect 1 in 5,000 people worldwide. Certain types of EDS are relatively more common than other types. A unique characteristic of the condition is the possibility of being misdiagnosed or left undiagnosed.
How is EDS diagnosed?
Diagnosis of EDS is based on physical examination and family history. It is also possible to diagnose the condition with genetic testing when in doubt. For instance, symptoms that are typical or tell-tale in nature can be indicative of the condition. Patients and caregivers could then seek diagnosis and tests to confirm or disprove the condition. Presently, there is no cure for EDS, and all treatment is intended to be symptomatic and supportive in nature. Treatment typically includes physical therapy, occupational therapy, and pain management.
What drugs should you avoid with Ehlers-Danlos syndrome?
With the basic information about the condition, it is time to answer the question. Patients and caregivers are to mandatorily inform treating physicians about any medications in use. A list of some of the medications that may not be safe or effective for people with EDS include:
- Nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen and naproxen, that may increase the risk of bleeding and bruising
- Blood thinners such as warfarin, that may also increase the risk of bleeding
- Collagen-based products, that may actually worsen the symptoms of EDS
- Narcotic pain medications, due to the addictive nature and possible lack of efficacy in managing pain in people with EDS
- Patients with EDS may also have an increased risk of adverse reactions to anesthesia, it is critically important to inform about the condition prior to any surgical procedure.
Why should NSAIDS be avoided by patients with EDS?
Nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen and naproxen are to be avoided due to the risk of bleeding and bruising. Individuals with EDS have a higher risk of bleeding, as the skin and blood vessels turn fragile and extremely sensitive with the condition. NSAIDs work by blocking the production of prostaglandins, that have a role in regulating inflammation and pain. However, prostaglandins also play a role in formation of blood clots, and by blocking their production, the risk of bleeding increases. This can be particularly dangerous for patients with EDS. In addition to bleeding, NSAIDs can also cause other side effects such as stomach upset, ulcers, and kidney damage.
Why should blood thinners be avoided by patients with Ehlers-Danlos syndrome?
Blood thinners, such as warfarin and heparin, can increase risk of bleeding by preventing blood clots from forming and making it more difficult for arresting bleeding. Therefore, it is generally recommended that patients with EDS avoid taking blood thinners. Instead, other medications or physical therapy may be used to manage symptoms.
Why should collagen based products be avoided by patients with Ehlers-Danlos syndrome?
Collagen is a protein found in connective tissue and is a major component of skin, tendons, and ligaments. Collagen-based products, such as supplements and creams, are commonly marketed as a way to improve the appearance and health of skin and joints. However, for patients with Ehlers-Danlos syndrome (EDS), using collagen-based products may be detrimental, due to the following reasons:
- May not deliver the desired results: EDS and the genetic mutation may affect the production of collagen, therefore, taking additional collagen supplements may not help the patient’s condition.
- Can trigger allergic reactions: Some patients with EDS may be allergic to bovine or porcine-derived collagen, which is commonly used in collagen supplements and creams.
- Risk of inflammation: Collagen-based products may cause inflammation, which can aggravate symptoms in patients diagnosed with EDS.
Prior to use of any supplement or topical applications, it is important to seek consent from the specialist as the underlying genetic disorder might deliver results that differ individuals without the condition.
Why should narcotic pain medications be avoided by patients with Ehlers-Danlos syndrome?
Narcotic pain medications, such as opioids, can be dangerous for patients with Ehlers-Danlos syndrome (EDS) for several reasons, as listed below:
- Increased risk of addiction: Higher risk of developing opioid addiction because of the chronic nature of pain in patients with EDS.
- Increased risk of overdose: Patients with EDS may be more sensitive to the effects of opioids, which can increase the risk of overdose.
- Interference with physical therapy: Narcotic pain medications can make patients drowsy and less alert, which can interfere with ability to participate in physical therapy and other forms of rehabilitation that are important for managing the symptoms of EDS.
- Masking of pain: Narcotic pain medications can mask the pain of EDS, which can make it more difficult for patients and doctors to identify the underlying cause of the pain. This can delay proper diagnosis and treatment.
Patients with EDS are advised to avoid opioid pain medications, and rely on other pain management options including physical therapy, occupational therapy, and non-opioid pain medications.