New Biologic Approved by the FDA for sJIA, Still's Disease!

A biologic called Ilaris, an Interleukin-1 (IL-1) beta inhibitor, has been approved for Systemic Juvenile Arthritis, Still’s Disease. Ilaris is already approved to treat other similar autoinflammatory diseases, such as CAPS (cryopyrin-associated period syndromes).

For those of us whose diseases best respond to IL-1 drugs (Kineret), it’s great to have another option on the market for us now and hopefully will make it easier for insurance to cover the medication (no more off-label use). A good day for JIA!

Click to read more.

Come chat with me on May 19th-20th for World Autoimmune Arthritis Day! We’re talking all things self esteem, self perception, and self love with Autoimmune Arthritis and chronic pain. From Prednisone weight gain to lose of purpose and identity, let’s chat.
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Come chat with me on May 19th-20th for World Autoimmune Arthritis Day!

We’re talking all things self esteem, self perception, and self love with Autoimmune Arthritis and chronic pain. From Prednisone weight gain to lose of purpose and identity, let’s chat.

Memorial for Laura Kenyon, author of Still’s Life— May 10th, 2013

For those of you that didn’t know Laura or of Laura’s advocacy work, please go and check out her blog, Still’s Life. She said it herself, she was a glass half full kind of girl. She was always there with snark or sarcasm, or a terrible pun to ease the pain and embarrassment of some of the symptoms patients like us go through. Despite the incredibly aggressive nature of her disease (not to mention the comorbid conditions), she managed to remain thankful and thoughtful in the darkest of days. I know I am not alone when I say that her ability to keep that glass half full and the grace with which she endured her Still’s Disease inspired (and still does) me to get up and live regularly.

Laura’s story, though incredible, is not unheard of in the autoimmune community. She had tried biologic after biologic; Orencia, Kineret, Enbrel, you name it. She would find temporary or limited relief and eventually end up in a serious system flare, hospital bound. Finally, Laura had run out of biologics to try and her last option was a radical one: extensive chemotherapy to eradicate her existing immune system and undergo a stem cell transplant.

Laura never made it to her first chemotherapy appointment. She also never made it to her wedding. But she was the only person I know who could possibly manage to plan both a wedding and a stem cell transplant at the same time. 

On May 10th, at 4pm UK time (11am EST), we will hold a memorial of sorts at the For the Love of Laura memorial Facebook page for 10 minutes. Please stop by, share a memory, share your sentiments, share a moment of silence, anything at all. Take a moment and say a prayer or kind thought for her and her loved ones— her fiance Matt especially. 

If you’re an Arthritis advocate, take a moment to remember that you are helping to carry on Laura’s legacy. We as patient advocates do not just advocate for ourselves. We advocate for an entire community of people, and we advocate for those in our community that we have lost— whether we realize it or not, we carry on the legacy of the advocates before us. On May 10th, we will remember and acknowledge Laura’s advocacy. 

Please reblog, retweet to spread the word and to spread her story.

Will you join us in celebration of an incredible woman who left an incredible legacy behind?

Health Activist Writer’s Month Challenge 2013: Day 13

Day 13— April 13, 2013

 Today’s Prompt:

  • Write a health acrostic for your condition, hashtag, or username! (acrostic = a poem where every letter of a word serves as the first letter of a word or phrase i.e. DOG = Digs Others’ Gardens)

There are way too many conditions to write an acrostic for each one, so I will stick to autoimmune

Advocacy

Unrelenting

Tiring

Overwhelming

Incredible

Malady

Multidimensional 

Unusual

Nonsensical

Empower


Did you do one for all of your conditions? Tag your post with #HAWMC and don’t forget to share your HAWMC Day 13 post on the Wego Health Event page on Facebook!

Health Activist Writer’s Month Challenge 2013: Day 07

     

Today’s Prompts Day 07— April 7, 2013:

  • Say WHAT!? What’s the most ridiculous thing you’ve heard about health or your condition? Where did you hear it and what did you think?

  • Share a ludicrous headline or cure.  Do a news search and choose a ridiculous headline or proposed cure about your condition and write what you think about it. Can’t find one? Write your own.

Oh man. I don’t even know where to start. If you read yesterday’s post, you’ll know how hideous a name my disease(s) have. Part of the problem is that the A-word is an umbrella term for over 100 diseases. It doesn’t really make a lot of sense and it breeds an awful lot of ridiculousness from people who are not familiar with Autoimmune diseases.

  • Lupus is not Osteoarthritis.
  • Still’s Disease is not Osteoarthritis
  • Ankylosing Spondylitis is not Osteoarthritis
  • Rheumatoid Arthritis (all variations, JIA/JA/JRA) is not Osteoarthritis.

So when patients call their autoimmune disease the A-word, it backfires for all of us. The awareness has to start with patients and their loved ones. So if you’re reading this and refer to your Lupus, Rheumatoid Arthritis, or other form of Autoimmune disease as “just Arthritis,” I urge you to stop. 

I’ve been on the receiving end of so much unsolicited advice and ridiculousness. I am not alone. This is just the tip of the iceberg:

  • “Have you tried Aleve?”
  • “It’s the gluten! You need to be on a gluten free diet.”
  • “It’s the pills. Don’t take those pills, be strong.” 
  • “It’s emotional trauma in your cells manifesting as a disease.” 
  • It’s been suggested that I go on an ALL BERRY diet
  • Healing crystals in my window will remove my disease from my cells
  • “You should take a probiotic, that will stop your GI inflammation.” 
  • “Pray more.”
  • “Are you going to church? Have you asked the Lord to heal you?”

Autoimmune patients are constantly invalidated, thanks to the A-word and lack of awareness:

  • “At least you don’t have cancer!”(Yes, please continue comparing two very different diseases to each other, as if it makes a good point)
  • I’ve had people comment that I should smile because it could always be worse. Yes, it could always be worse. It could also be better. 
  • “Everyone has cramps with menstruation. This is normal.”
  • “We have cancer patients in our scholarship program that can do this, you’re not the only one.”
  • “Oh, I have that in my pinky, see?!”
  • “But you were able to do x yesterday, why not today?”
  • “It’s your pain medication. You’re addicted to it and need to get off it. You’ll feel better.” 
  • “You must not be exercising enough.” 
  • I had a close friend make an incredibly ignorant comment about my day to day life with this disease. “Make your life a healthy and livable life without it on your mind day after day, only when doctor appointments come up or […] when you have to take a few pills here and there, that’s it.”

When I was first diagnosed, hearing these responses made me angry. Now, I am able to move beyond anger and use them as an opportunity to correct the misconceptions (though sometimes it is more productive to walk away and laugh). Sometimes people are open to learning something new, other times they are very much wrapped up in their belief in fad diets being a cure all. 

These disease are hard enough without the criticism, judgment, outrageous claims of cures, and unsolicited advice. If you are the loved one or know someone with a chronic disease, please, refrain from making statements similar to the ones you see above. If you playing the Mystery Diagnosis Game, don’t give up until you find your answers. You know your body best— there are doctors out there who will take you seriously. Endometriosis is not just cramps. Autoimmune Arthritis is not just aches and pains. Inflammatory Bowel Disease is not just going to the bathroom a lot.

Be a part of the solution, not a part of the misconceptions.

What is the most ridiculous thing you’ve heard in response to or about your disease(s)?

What Are Your Nails Telling Your Rheumatologist or Gastroenterologist?

Got a great question from Not That Kind of Chronic (whose sense of humor in blog naming I quite enjoy)

Your recent post mentioned not to wear nail polish to a rheumatologist. I always have a manicure. Can you tell me what my nails might show?

The first time you see one, yes. It’s not absolutely necessary to remove your polish, but the condition of your nails can tell your rheumatologist about the state of your health, and many doctors will examine both your fingernails and toenails. 

I, like many other rheum ladies, pretty much always have a manicure. I don’t take off my polish unless I notice there is a new nail development, but I do remove it when I see a new relevant specialist for the first time.

It’s particularly important if you are seeking a diagnosis from a rheumatologist, gastroenterologist, or other specialist for a systemic disease!

Here’s why:

  1. Nail Pitting — can be indicative of psoriasis (important for patients with Psoriatic Arthritis), Reactive Arthritis, and other connective tissue diseases 
     
  2. Spoon Nails (Koilonychia)— can be indicative of Systemic Lupus, Raynaud’s, and anemia
     
  3. Yellow Nail Syndrome — occurs in Rheumatoid Arthritis patients or often the result of infection or medications, both of which are relevant to Autoimmune Arthritis patients.
     
  4. Splinter Hemorrhages— small blood clots under the nail can indicate Systemic Lupus, Rheumatoid Arthritis, Antiphospholipid Syndrome, Psoriasis, Vasculitis, and Scleroderma (all rheumatology-related).
     
  5. Nail Clubbing— can occur with Inflammatory Bowel Disease (e.g., Crohn’s, Ulcerative Colitis), liver disease, and pulmonary diseases.
     
  6. Both Discoid and Systemic Lupus can cause nail changes such as cracking, curling, and even complete loss of nails.
     
  7. Rheumatoid Vasculitis or Nail Fold Vasculitis— can cause pitting, sores, redness, and infarcts of the nail-bed (not a pretty picture). 
     
  8. Nail health can also reveal possible vitamin deficiencies and malnutrition, both important when treating rheumatological diseases.

Some food for thought before your visit to a new specialist!

Just for fun, what do you use on your peeling nails? Do you keep yours painted? How do you take care of your nails? Answer below in the answer or Disqus box!