For many lupus patients, wintertime is particularly chilling. That’s because they also suffer from the painful disorder known as Raynaud’s phenomenon (also known as Raynaud’s syndrome or disease).
Raynaud’s is an exaggerated sensitivity to cold temperatures that causes numbness or pain as the tiny arteries that supply blood to the extremities narrow (vasospasms). Stress can also cause the reaction.
Scraping icy windshields, shovelling walkways, waiting for the bus, watching your kids’ outdoor sports and many other cold weather activities can cause painful spasms that last for hours.
According to the Raynaud’s Association, the disorder afflicts 5-10 percent of the population — but as many as 40 percent of those with systemic lupus are affected. Nine out of 10 of them are women.
Lynn Wunderman, founder and chair of the Raynaud’s Association and a Raynaud’s sufferer herself says, “bundling yourself up with heavy clothes is great, but try using a cellphone or opening a door with a key when you have heavy gloves on. You have to take them off and then the pain hits.”
In a typical Raynaud’s episode, fingertips may turn blue or white, then red (upon recovery), but it varies by individual. “There’s no cure yet for Raynaud’s, but there are treatments that help many people with the severity of the episodes,” says Wunderman.
According to the Raynaud’s Association, 90 percent of Raynaud’s sufferers do not seek treatment for the disorder. “They often brush it off by saying they have poor circulation,” says Wunderman. “Seeking medical help is important because Raynaud’s could be an indication of a serious and disabling underlying disease such as lupus, scleroderma or rheumatoid arthritis.” For many of these patients, Raynaud’s is the first indication that something else is awry.
A blood test known as the ANA (antinuclear antibody test) can determine whether the Raynaud’s is primary or secondary to lupus or another inflammatory disease. “It may take years for the other disease signs to show up, so follow-up with your doctor is important,” advises Wunderman.
Drugs such as calcium channel blockers may help take the “edge off” the spasms that result during an attack, or may help to reduce the formation of digital ulcers that occur in more serious cases. Drugs that increase blood flood such as those used for erectile dysfunction (ED) can also provide relief for more severe cases but are not covered by most insurers in the USA.
In the UK one drug, Nifedipine, a calcium channel blocker, is licensed for Raynaud's and there are drugs that are prescribed commonly for Raynaud's too. Nifedipine doesn't cure Raynaud's, but can help to relieve symptoms. Other medications such as Iloprost and even botox and acupuncture have been used to treat Raynaud's. You would need to consult your medical specialist to discuss the best treatment for you.
Biofeedback, tai chi, yoga and some other non-medicinal practices that aim to increase blood flow have helped to diminish the severity of attacks for some, but studies have been inconclusive. “At this point, much of the treatment for Raynaud’s is geared toward avoiding cold or stress,” Wunderman says. “Obviously, that’s not always practical.”
The Raynaud’s Association is a 501(c)(3) charity whose primary mission is to raise awareness of the disorder so that sufferers will seek treatment.
An important element of the association’s work is support via several channels such as its website, www.raynauds.org; a comprehensive guide, “The Cold Facts on Raynaud’s (and Strategies for a Warmer Life)”; informational videos; a blog; patient discussion forums; product reviews; and a strong presence on social media such as Facebook, Twitter and Pinterest. Materials are vetted by a Medical Advisory Board of leading rheumatologists internationally known for their expertise in Raynaud’s research and treatment.
Because it’s an all-volunteer organization and drug companies are not allowed by law to provide financial funding (because there’s no drug specifically FDA-approved for Raynaud’s), the Association relies exclusively on donations and grants.
To learn more, and to support the important work of the Raynaud’s Association please click here.
Our thanks to the Raynaud’s Association in the USA for kindly providing this article for us.