FDA OKs Kcentra: New Drug to Quickly Stop Acute Coumadin Bleeds

For those of us who take the blood thinner warfarin (brand name Coumadin) or similar drugs to prevent prevent clots, one of the scariest of life’s scenarios is an accident or fall. It’s especially scary for patients like me who, because of an acute tendency to clot, must keep their blood extra thin to prevent stroke or heart attack.

In the twelve years I’ve been taking warfarin, I’ve had many bleeding incidents, three of them serious.  One,  which my doctor feared was approaching the dire “compartment syndrome,” kept me in bed for five weeks.

Now, there’s a new weapon in our battle to keep healthy.

Yesterday,  the U.S. Food and Drug Administration  approved Kcentra (Prothrombin Complex Concentrate, Human) for the “urgent reversal” of vitamin K antagonists like warfarin  in adults with “acute major bleeding.” Plasma is the only other product approved for this use in the United States, the agency said.

Like plasma, Kcentra is used in conjunction with vitamin K to reverse the anticoagulation effect and stop bleeding. The advantage of the new drug is that, unlike plasma, Kcentra does not require blood group typing or thawing, so it can be administered more quickly than frozen plasma. In addition, Kcentra is administered in a significantly lower volume than plasma at recommended doses. This will benefit patients who may not tolerate the volume of plasma required to reverse the anti-coagulation.

So, for someone with a life-threatening bleed, Kcentra may offer a advantage. I’ll be anxious to talk to my doctor to hear his thoughts.

The down side of Kcentra is the possibility of blood clots,  even when used properly.  That’s a special concern of mine, since the disease that caused my stroke—Antiphosoholipid Syndrome (APS)—is especially prone to clotting under traumatic conditions. Sudden reversal of anti-coagulation could put me at very high risk of another stroke. So my personal strategy, worked out with my doctor,  won’t change: watch my blood thinning like a hawk; get my INR (a measure of blood thinning) tested frequently; try to avoid falls or accidents; and in case of  bleeding that’s not life-threatening, reduce or stop the warfarin (in close consultation with my doctor) and let my INR  drift down gradually.

But for those of us taking Coumadin, life-threatening bleeding is a real possibility. So even though I’ll try hard never to need it, I’m glad for the treatment alternative Kcentra presents.

You can read more about Kcentra here.

Getting ready for a trip? A few important health reminders before you go …

My office is awash in yellow stickies this week … Don’t forget! Underlinings, stars and exclamation points decorate every page.

It’s clear there’s more  to remember than my brain can handle. Here are just a few of the admonitions swirling in my damaged  brain … I must pause and pull this together into an at least semi-coherent list:

  • Check  meds carefully. Order refills in plenty of time. Then, count to be sure I have enough of everything to last at least five days longer than I plan to be away. The extra days are a contingency against transportation delays.
  • Always carry my meds with me – never in checked luggage.
  • In addition to my usual medications, pack extra vitamins and remedies for colds or upset stomach that might arise on the road.
  • As a stroke patient on blood thinner, I carry lots of band-aids as well as pressure tape and clotting agents like the Quick Clock sponge.
  • I always get my INR checked (which tells how how well the Coumadin is thinning my blood) a day or two before I leave – several days if I’ve had trouble keeping stable.
  • I try to arrange it so I don’t need another blood test before I return home.  But, I carry a prescription from my doctor for a blood test to measure my INR just in case. If sense things are “off,” I can have it tested on the road.
  • I have to prod myself to wear my medical ID bracelets.

I also remind myself to:

  • Charge cell phone, computer, camera and Kindle the night before I leave
  • Double-check itineraries and tickets
  • Arrange airport transportation
  • Get plenty of rest before I leave. HA!

 

Do any of you feel overwhelmed by all the details?

Ten Reliable Sources of Health Information on the Web

Have you ever gone to a doctor’s office armed with information pertinent to your illness that you’ve gleaned from the web, only to have him (or her) do the eye roll that seems to send the message: “I don’t have time for this?”

That may be changing. Everywhere these days, it seems the health care system is stressed. Doctors are pressed for time, visits are getting shorter and less frequent.  It behooves all of us–especially those of us who suffer from chronic illness–to stay informed. Some doctors are realizing that patients can be effective monitors and scouts–if they can fish out the reliable sources from the flotsam of information–and misinformation–that’s floating out there on the web.

In a big departure from eye rolling, my healthcare network (John Muir in northern California) recently issued a list of reliable sources for patients who want to learn more about their health.  I have used many of these for years, with good results.

  1. Centers for Disease Control and Prevention – One of the best government websites on the Internet.  Good source of info on disease prevention and control. Essential (in my view) for overseas travelers. Also covers emergency preparedness, environmental health, occupational safety and health.
  2. Cleveland Clinic Health Information Center – Information on over 900 health topic. Includes podcasts and web chats and health questions answered by physicians.
  3. Familydoctor.org – Articles written by members of the American Academy of Family physicians. Includes a medical dictionary, health calculators, conditions A to Z and more.
  4. Healthfinder – Developed by the US Department of Health and Human Services, Healthfinder links to carefully selected websites from more than 1,500 health-related organizations.
  5. John Muir – Includes multimedia library, health tools and (for local residents) “find a physician,” and calendar of events and classes.
  6. KidsHealth.org – KidsHealth is the most-visited site on the web for information about children’s health that’s “free of doctor-speak.”
  7. Mayo Clinic – Library of information on diseases and conditions, healthy living guides, health tools, treatment decision guides, and an “ask a specialist” feature.
  8. Medline Plus – A gold mine of good health information from the world’s largest medical library. Info on over 800 diseases and conditions, directories, medical encyclopedia, illustrated medical dictionary, drug information, links to clinical trials, interactive health tutorials, and health information in more than 40 languages.
  9. National Cancer Institute – Extensive information on types of cancer, treatments, drugs, statistics, clinical trials. Also has a telephone help line, live online chat, and email.
  10. NOAH: New York Online Access to Health – NOAH provides access to high-quality consumer health information (in English and Spanish). Arranged both alphabetically and by body site, it includes a search a search feature to guide users to the topics they need to see.

The message here is: There are many reliable sources of medical information on the web. It’s up to us, as patients, to keep abreast of the latest developments that affect our particular health situations. That way, we can serve as an extra pair of eyes and ears for our doctors. And, we can be more effective advocates for ourselves and our families.

I’m pleased that my own health network is realizing that and inviting my participation.

What’s been your experience using the web as a source of health information? 

What responses have you had from your doctors?

Do you have other reliable sources not mentioned here?

Traveling with chronic Illness: Stories explore the ups and downs

It’s a pleasure to have four of my stories published over the past few months in three different anthologies. Each story, in its own way, explores the theme of traveling with chronic illness. That’s something I think about often as a stroke survivor and autoimmune patient chained to a steady diet of blood thinners to prevent another stroke.

I was the unlikeliest adventure traveler, having no real experience – and zero physical aptitude – for Indiana Jones style adventuring. All I had was heart, a taste for adventure, and a desire to see the world.  The stories tell what happened then.

Here’s where you can find them:

  • “Bali Shadows” and “Authentication Failed” appear in the travel anthology Wandering in Bali: A Tropical Paradise Discovered
  • “Toboggans and Bouzouki Music” appears in the juried anthology Travel Stories from Around the Globe by Bay Area Travel Writers
  • “Why I Still Travel to the Wild” appears in the anthology Chicken Soup for the Soul: Find Your Happiness, 101 Stories about Finding Your Purpose, Passion, and Joy

Here’s a link to purchase the books: http://bit.ly/Nj0fAF

And here are a few excerpts:

“Having flunked jump rope in seventh grade, having washed out of college PE, no one–least of all me–could have predicted that I’d marry an intrepid adventure traveler and follow him on wild jungle treks across crocodile infested rivers … I was new to exotic travel, tentatively following (my husband) Jack’s lead. In the years since, Jack and I had slogged through jungles and deserts on six continents. We’d tracked leopards in Botswana and grizzlies in Alaska. Bali would be an easy trip down memory lane. Now, my only fear was for my health.”

(Excerpt from “Bali Shadows”)

“I was different now: I’d had a stroke at forty-eight, a cataclysm that left me unemployed, memory-challenged, dependent on scary-high levels of blood-thinner, particularly vulnerable wherever medical care was thin.”

(Excerpt from “Why I Still Travel to the Wild”)

“When I talked about starting to travel again travel–especially to the adventure destinations Jack and I loved–my doctors cautioned me sternly: get plenty of rest, take it easy, avoid overheating, avoid dehydration, infection, accidents and, above all, never, ever hit my head. Adventure travel in my state of health, they seemed to imply, was like a 15-year-old with a learner’s permit competing in the Indy 500.

(Excerpt from “Toboggans and Bouzouki Music”)

Have you ever had qualms about traveling with a chronic illness?

 

New study: Patients on even low levels of warfarin may not be good candidates for tPA

Patients already taking the blood thinner Coumadin (warfarin), even at low doses, may not be good candidates for the clot-busting drug tPA in the event of a stroke, a new study indicates.

Thrombolysis (treatment with the “clot-busting” drug tPA) in the early stages of a new stroke is often the very best hope a patient has to recover with minimal brain damage. It’s been called a ‘miracle drug,’ because many patients recover with minimal or no loss of function. But tPA comes with a risk: the potential for bleeding inside the brain, which can often be more catastrophic than the stroke.

For that reason, there are strict protocols indicating when tPA should be considered. It must be given within three hours of the onset of symptoms and should not be given to patients for whom the risk of bleeding outweighs the benefits. It’s a long list: patients who’ve had seizures, head trauma, major surgery, who’ve been given the blood thinner heparin.  Patients taking Coumadin (warfarin) have also been excluded if their INR (a measure of how “thin” their blood is compared to a “normal”) is significantly higher than normal.

A “normal” INR is about 1.0. The “therapeutic range” to help prevent blood clots is usually between 2.0 and 3.0.  Patients taking warfarin at below-therapeutic levels (with an INR below about 1.7) have been considered eligible for thrombolysis.

The current study, conducted by the Medical University Innsbruck, Innsbruck, Austria, found that patients taking warfarin at subtherapeutic levels had a significantly higher rate of symptomatic intracranial hemorrhage than other patients.

The study was small, but it included a “meta analysis” of nine past studies. Four of them found a significantly increased bleeding risk among patients with elevated but “subtherapeutic” INR. Five found no increased risk.

So the jury is still out. An editorial in the Journal Neurology summed up our current state of knowledge: “But as the overall findings support the possibility of an increased bleeding risk in patients with warfarin … “clearly, the decision for [intravenous] thrombolysis needs to be taken with caution in these patients.”

For those of us who take Coumadin, it sometimes seems like we’re tip-toeing everyday through a minefield of potentially fatal risks and decisions. Some days I want to stick my head in the sand, ignore the risks and just live my life.  Not smart. The risks are real, and the day may come when we or our families have to face hard decisions like this. That’s why we need to stay informed.  Thanks to Tina Pohlman for sharing this item on the APSFA Facebook site.

Read more at medical news.com.

Blood thinners in the Jungle? Am I Crazy?

 

Am I Crazy? As an autoimmune patient with APS, as a stroke  survivor on blood thinners, people sometimes ask why I travel to places teeming with opportunities for disaster.

“Places where medical care is thin, the water is often unsafe and the food chancy; places with infectious diseases, malarial mosquitoes, venomous snakes and the wildest of animals; some places where the locals are just a few generations past headhunting.”

I have asked myself that question, many times, most recently when I set out for a month of temple climbing in India with my knee swollen and braced a week after suffering a “spontaneous” bleed.  Just one of the aggravating hazards of a life on blood thinners. I answered my own question–Why go?– in an essay titled “Why I Still Travel to the Wild,” and wrote about it again yesterday in my travel blog JunglePants.com.

My essay was published in the anthology Chicken Soup for the Soul: Find Your Happiness, available at bookstores and on-line. I hope you’ll check it out.

Why venture to the wild?

The photos below provides a hint about why I venture afar.

For another perspective, read famed travel writer Paul Theroux’s  eloquent essay about the siren pull of travel in  New York Times, “Why We Travel in Turbulent Times.”

Why do you travel?

Sri Lanka–Feeding times for toddler elephants
China–Frisky pandas at the Panda Research Center near Chungdu

Twelve tips for avoiding mosquitos–and the serious diseases they carry

Anne & Jack in Botswana

The Australians call them ‘mozzies’–such a cute name–as though mosquitoes were just pesky little creatures that buzz and bite, one of the minor annoyances of venturing off the beaten track. I used to think of them that way, too, until I started traveling to the tropics and meeting people who’d had malaria, dengue fever (its other name–breakbone fever–gives an idea of the pain involved), Japanese encephalitis and its offshoot, West Nile virus.

These diseases are bad news for even the healthiest of travelers. The stakes are even higher for me, an autoimmune patient who takes high level of blood thinning Coumadin.

I’m heading to Bali in September. My trip preparation always included checking with my travel clinic and consulting the CDC to assess the health risks. I learned that there is no malaria on Bali but there is degue fever. There is no prophylaxis other than insect bite prevention. I also learned that dengue-carrying mosquitoes are active during the day, unlike malarial mosquitoes, which usually bit during the dawn/dusk hours.

I’ll need to be extra vigilant about mosquito bite prevention.  Here are the strategies I’ll use.

Twelve Tips  to Prevent Mosquito Bites:

  1. I don’t mess around with mosquitoes in the tropics. I carry (and use) strong insect repellent.  My personal choice is Repel sportsmen formula with 29% deet, which meets the CDC recommendation of at least 25% DEET. It’s widely available in lotion, pump, or spray. I personally prefer the spray in small containers that are easy to carry in my purse and daybag so I always have it handy.
  2. Other options include: Ultrathon (recommened by my traveldoc), a 12-hour repellent (33% DEET) lotion) and Jungle Juice – 98% deet – available in a pump spray at REI
  3. For extra prevention, I use Permethrin clothing spray(also recommended by my travel doc).  It comes in a spray-on formula that lasts for two weeks.  It’s used to treat your clothes before you leave home.  It doesn’t harm the clothes, though I’ve usually only treated casual and outdoor outfits
  4. Long pants and long sleeve shirts are another way to prevent bites and protect from sunburn.  I have several ultra-lite weight “jungle pants” and hiking shirts. Columbia “Bug Shield” and Ex-Officio “Buzz Off” brands are made to be lightweight and insect repellent.
  5. Insect repellant bandanas are offered by Ex-Officio (Insect Shield, Bugs-Away and Buzz-Off. (The Buzz-off bandana is a bit big and hot for my taste)
  6. Everyone traveling in the tropics should sleep under a mosquito net. Many hotels provide them. Be sure to use them (and make sure they are properly closed).  If you’re camping or staying in hotels which may not provide nets, consider taking your own. REI has a selection of lightweight travel nets.
  7.  Wear light colored clothing (mosquitoes are attracted to dark clothing).
  8. Switch to all unscented products to avoid becoming mosquito bait. Mosquitoes are attracted to floral and fruity scents. Never use perfume or cologne. But that’s not enough: also avoid perfumed shampoos, hand creams, soaps, etc.
  9. Sweat attracts mosquitoes, so do the best you can to keep cool and dried off. (Here’s where the bandana may come in handy.) If you’re going to be outside, consider a shower (or at least reapplication of mosquito repellant) after exercising.
  10. Foods high in salt or potassium produce lactic acid, which attracts mosquitoes.  So leave the bananas and pretzels behind on your outdoor picnic.
  11. If you do get bitten (and you probably will), don’t panic and don’t let worry ruin your trip. There are many more harmless mosquitoes than disease carriers. Just reach for the itch medicine and hope for the best. My favorite is After Bite Itch Eraser. Another is Benadryl crème. For more options see: 40 Mosquito Bite Itch Relief Tips
  12. If you do develop symptoms (fever, chills, sweats, headache, nausea, backache, painful joints) don’t delay: seek treatment immediately.

Webinar on Antiphospholipid Syndrome set for Tuesday, September 6

September offers an unusual opportunity to hear the latest on developments in diagnosis and treatment of Antiphospholipid Syndrome (APS) at a free one-hour

webinar set for Tuesday, September 6, at 8:00 pm EDT (5:00 pm PDT).

The discussion, sponsored by the American Society of Hematology (ASH), will include three presentations:

  • Dr. Mark Crowther (McMaster University) – Diagnosing Antiphospholipid Antibody Syndrome
  • Dr. Tom Ortel (Duke University) – Anticoagulant (Blood thinner) Management of Antiphospholipid Antibody Syndrome
  • Dr. Shannon Bates (McMaster University) – Management of Antiphospholipid Antibody Syndrome in Pregnancy

Moderator will be Dr. Wendy Lim, MD (McMaster University).

Learn more about the event on the American Society of Hematology website: http://bit.ly/nqMQH8

The webinar is targeted to physicians but it is open to anyone. I’m planning to attend. I’m especially interested the discussion on Topic #2: Anticoagulation–a particularly vexing topic for APS patients (like me) who’ve already had a stroke.

To attend, register in advance at: http://bit.ly/orJjrE

Updated App for iPhone and iPad helps Coumadin users track Vitamin K

The world’s gone app-happy. It seems there’s an iPhone/iPad/iPod touch app for just about everything these days, even, I’ve just learned, an app to help patients who take blood thinners keep track of their intake of Vitamin K.

For those of us who take Coumadin  (warfarin), Vitamin K is a boogeyman. That’s because K–found principally in dark leafy green vegetables like kale and Swiss chard and spinach that are supposed to be good for us–can inhibit the blood thinning effects of Coumadin.

When I first learned I’d have to be on blood thinners for the rest of my life, I worried incessantly about the K in green vegetables. I imagined little green K monsters coursing through my blood disabling the Coumadin I took to try to keep my blood thin enough to prevent another stroke. I ordered a book called The Coumadin Cookbook–not for the recipes, but for the detailed tables in the back that allowed me to calculate the micrograms of Vitamin K in everything from cucumber (not much) to Swiss chard (a lot). I entered the amounts on a spreadsheet and stuck it on the refrigerator with a magnet.  I pointed to it every now and then, mainly as excuse not to eat the icky collard greens or Brussels sprouts I’d never liked anyway.

I never needed it for much of anything else.

Like many other Coumadin patients, I’d coast for a time snug in my target INR range (measure of blood thinning), until, boom, things started spinning out of control: my INR swung from too low (I worried about another stroke); then too high (I worried about bleeding.) But these wild turnings never seemed related to food. Infections were almost a sure bet to wreak havoc on my INR. Introducing new drugs was often a problem, like antibiotics if I had an infection, or anti-malarials for a trip to the bush.

Perhaps I’m just lucky. Perhaps I don’t like green vegetables enough to make a difference.

But for those who do worry about Vitamin K, the app, by independent developer James Hollender, sure beats a spreadsheet. His Vitamin K 2.4 app allows users to easily find out how much vitamin K there is in over 900 different foods. It’s available now at the itunes app store:  http://bit.ly/qeaNNk

Don’t Mess with your Meds: Use “STAR Check” to Prevent Errors

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Sticking to a drug regimen can be confusing for anyone: Doubly so for anyone with impaired memory or attention deficits. Most stroke patients fall into that category. I know I do.

I left the hospital after my stroke still dazed, groping through each day behind a veil of confusion. Within a few weeks, doctors found that my stroke had been caused by a serious autoimmune clotting disorder, Antiphospholipid Syndrome (APS). Because the danger of repeat strokes is so high with APS, I was “sentenced” to take Coumadin (the generic name is warfarin) for the rest of my life. The Coumadin would make my blood less prone to clots. But too much Coumadin could result in a dangerous bleeding accident. Continue reading “Don’t Mess with your Meds: Use “STAR Check” to Prevent Errors”