Raynaud’s Guide From a Fellow Frostie

Feet in Ice CubesWe found a post from The World According to Lupus – a blog written by Atlanta Titus, a Lupus sufferer and fellow Frostie.  The post is titled Icy Fingers and Toes:  A Guide to Raynaud’s – so it got our attention.

It’s always enlightening to hear sufferers describe their symptoms related to Raynaud’s, because we find it to be a very personal experience.  While we may all go through color changes, pain and discomfort, each of us has our own way of describing what we see and feel during Raynaud’s attacks.

Atlanta’s post includes graphic descriptions – you can really feel her pain, even if you’ve never experienced a Raynaud’s attack.  A few examples:

  • Describing her hands and feet during an attack as blocks of ice:  “I could probably create Arctic ice shelves with my extremities.”
  • When describing the warm-up period at the end of an attack: “…feels like my head has been dunked in a cauldron of boiling hot oil.”

For a short blog post, she incorporates a good deal of useful information, including:  Definitions of primary vs. secondary Raynaud’s, drug treatment options, lifestyle suggestions (several of which she finds personally difficult to follow!), a self-diagnosis quiz link from About.com (not a perfect resource, but a fair tool), and a list of helpful resources.

On the treatment options, she lists the intravenous use of prostacyclin.  This drug is a powerful vasodilator injected intravenously in a hospital environment for sufferers with extreme cases. We’re happy to announce that alprostadil, another powerful vasodilator, may in the near future be made available to Frosties.  A topical version of the drug called RayVa, manufactured by Apricus Bioscriences, is currently in Phase 2 clinical trials, so stay tuned for more information on its availability for Raynaud’s sufferers.

It’s worth noting that to date, there are no FDA-approved drugs developed specifically for Raynaud’s – all are being used “off label,” which means their primary function is to treat other medical ailments.  For example, calcium channel blockers, the most commonly-prescribed drugs for Raynaud’s patients, are approved for treating people with high blood pressure.  They help with Raynaud’s because these meds work to open the blood vessels so that the blood flows more freely and aid circulation, but they weren’t originally created specifically for treating Raynaud’s.  Let’s hope more pharmaceutical companies start working on medications focused on the Raynaud’s community!

One final note on the lifestyle suggestions from Atlanta’s post.  It mentions the use of Evening Primrose oil.  To date, there is no clinical evidence proving that Evening Primrose, or any nutritional supplements, are effective in treating Raynaud’s symptoms.   Most of the research related to supplements has suffered from small sample sizes, inconsistent methodologies, and other issues that make it difficult to draw conclusions from these efforts.  Atlanta recommends that you consult with your doctor before taking Evening Primrose, as all herbal and natural supplements can interact with other medications or result in side effects that can be detrimental to your health.

Here’s the full blog postIcy Fingers and Toes:  A Guide to Raynaud’s.  Thanks for publishing it Atlanta!