Spurs, they are a janglin'

I've got a new diagnosis.  No, it's not yet another autoimmune disease.  But some of the symptoms I was experiencing, I had thought were caused by rheumatoid arthritis.

But, alas, it is not so.

Spurs!!

Bone Spurs, that is.

For quite some time, I've had that grinding, crackling noise in my knees when I sit (wasn't all the time, though).  My understanding was that this is extremely common and called crepitus.  I remember my yoga teacher (years ago) saying that it was nothing to be concerned about.  So I ignored the noise.

At various moments over the last several years (shortly after RA was diagnosed), I've wondered if I were developing RA in my knees.  I would feel a full sensation and the knees seem to be swollen, especially my right one.  But we never really looked any further.

Last month, I was climbing up and down a ladder many, many times when prepping and painting the music studio.  (I still need to take photos and post them.  I just got the newly-framed pictures back this week....so soon.)  I know that I put a lot of pressure on my knees, strained them, twisted them, abused them.

Since then, my knees have been hurting, especially my right knee.  It's the one which has felt wrenched.  I would take it easy, taking stairs one at a time to avoid the shooting pain, and hope that healing would occur.  The pain simply became outrageous enough that I called my doctor.

X-rays were taken of my knee and I received a referral to an orthopedic doctor in return.  Bottom line is that I have bone spurs under my kneecap.  I believe that he said the official (long) name of what I have is chondromalacia patella.  (However, I didn't write it down and have just tried to find something which sounds vaguely familiar and fits my symptoms.  I think that's what he said.)

The doctor also used another term which I didn't like to hear.  He mentioned osteoarthritis.  Dang it, early OA of the knee(s). 


The good news was that I was the recipient of a wonderful steroid injection in my knee.  The pain has diminished.  The crackling has diminished.  The joint moves much more smoothly now.   Now I kinda wish that my left knee had received the special treatment too.  It is still stiff and crackly (although not nearly as bad as my right knee had gotten). 

The advice of of the orthopedic doctor?  Ride that stationary bike 30 minutes, 3 times per week.  Best thing I could do for my quality of life as an MS patient.  His advice echoes that of my rheumatologist too.  Now, I really, REALLY, need to move that bike into a location where it is easy to use.

Carnival of MS Bloggers #73

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

A Good Stretch and Tickling the Funny Bone

What’s a trip to Chicago without the Cubs?

by Jennifer Digmann

It was eight years ago today – September 28, 2010. Eight years ago that I met Dan and told my mom, “He’s really cute and sweet, but mom – he likes Springsteen. Yuck! And he loves baseball. How boring!!”

Now eight years later, not only am I happily married to Dan, but I’ve seen Bruce in concert six times – loving every one of them. And on our honeymoon, we saw the Boston Red Sox play baseball in Toronto. So it shouldn’t come as much of a surprise that we celebrated our fifth anniversary by meeting up with friends from Iowa to see a Cubs game in Chicago.

What a gorgeous, sunny day for baseball.

Dan, our friends Pam, Steve, D.J., Deb, and I found our seats about 30 minutes before the first pitch.  Wrigley Field, what a great evening!!

Our seats were at the very back of the second tier on the third base side. And if you regularly read our blog or know my life with MS, you know a bathroom has to be part of this story. The family restrooms, the ones I use with Dan’s help, unfortunately were located either on the level above us or on the level below us. Imagine having to wait for the elevator every time you had to go to the bathroom!

That’s exactly what I had to do. But it only took me one such trip before tired of making it. Luckily, we noticed vacant accessible seats closer to the family restroom, which coincidently had an incredible view of the ballpark. So I kindly asked a friendly usher, “How can we get seats like these? You know, ones closer to the bathrooms I use?” He understood my situation and encouraged me to check with Fan Services to inquire about upgrading our tickets.

Long story short: We were able to upgrade close to the family restroom on the first level, which landed us 10 rows from the field right behind home plate! It cost us a little more for these great seats, but it was SO worth it.

And just when the night seemed to be perfect, remember that band-aid on Dan’s forehead I mentioned in my last blog? Here’s the less than perfect way that happened - there had to be a way to get me and my powerchair that close to the field, and it involved me taking a motorized chairlift. In helping to secure my chair to said chairlift, my loving husband stumbled - stupid numb MS feet - and he hit his head hard.

Dan had to be treated by the nurses in the ballpark’s First Aid station. They were quick to treat him (no stitches needed!) and he was back to the game before the second inning ended. Hence his name is now, and forever, on file at Wrigley Field… granted it is in medical records but still, how many of us can say that?

What a stretch!

The game was great, highlighted by standing with Dan during the seventh-inning stretch where Hall of Fame running back Gale Sayers sang “Take Me Out to the Ball Game.”

What a stretch!

And speaking of singing, in the eighth inning three ballpark ushers sang “Happy Anniversary” to us and presented us with a ball used during the game. It even has dirt and scuffs on it. What a souvenir!

And what a night for me, a girl who once hated baseball. A girl who doesn’t let multiple sclerosis stand in the way of experiencing life. A great life with that cute man I met eight years ago.

True Story

from Multiple Sclerosis & Me by S.S-O

Saturday I had to take my car into Honda.  I got there and the Honda man opened my door.  I told him my usual, "I'll take a moment..." because in addition to just taking my time to get out the car, I was juggling a book, a cup of coffee, the cane, my phone and my handbag.

He said, "no problem...take ur time.  Would u like me to hold something for u?"

I said, "oh yes, thank u"...

 and handed him the cane!!

It Made Me Laugh
by Karen of Meandering...One moment please
 

Two neurologists are hot air ballooning when clouds come up and they realize they're lost. They go lower, and suddenly the clouds part and they see that they're passing over a field where a man is on a tractor.

One of the neurologists leans out and yells, "Hey! Where are we?"

The man on the tractor looks up and shouts back, "In a balloon!"

Then the clouds swallow them up again. The first neurologist smiles. "This has been a great day! We saw good scenery, we put back some brewskies, and now to make the day complete, the first guy we meet is a neurologist too."

"Wait a minute!" interjects his friend. "That looked like a farmer to me. What makes you say he's a neurologist?"

"Well, think about how he answered our question. He gave us precise localization and it didn't help a bit."

******************************

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Going off the SWANK Diet!

This concludes the 73rd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 21, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, October 19, 2010.

Thank you.

Comments for this post.

Gilenya, first MS oral drug, updated information

As soon as the FDA gave Gilenya the approval nod, speculation in the MS community has been 1) when will the drug be available for patients, 2) what will it cost, 3) how many patients will switch from their current therapy to try it?  We now know the answer to two of these questions.

Gilenya will be available for sale in the United States this week, according to a recent Bloomberg report.  It takes time for marketing materials to be approved (which is also done by the FDA) so we might not be seeing ads for Gilenya just yet.  But what better marketing is there with a new drug launch than to read a series of articles and blog posts regarding the new oral medication?  It is our word-of-mouth which will prove to be the most effective marketing, I believe, that Novartis can count on right now.

The biggest concern I have heard from other patients is WHAT IS THE COST?  A spokesman from Novartis informed a Bloomberg reporter that the wholesale price has been set at $4000 per month for the daily pill.  My initial response, and those of other bloggers I follow, was one of outrage and astonishment.  Why in the world would Novartis set a price considerably more expensive than the current self-injections?

Read this post in its entirety:


Gilenya (fingolimod), first MS oral drug, will be available in the US with financial help from Novartis

Welcome to the MS Blogosphere

beingtoostrong's blog by Janet

Now I’m just wondering when is it my turn to not be the strong one. So far I have had to be strong for everyone around me. Pretend that this isn’t bothering me. Especially for the kids and my husband. And most of the time I have to even hide my symptoms. So I’d just like to know when everyone else is going to get used to the news so that I can go find a quiet place and start screaming. But I guess that’s what this is all about.

Stranger Feet by Nik

Selfishly addicted to life. I'm a mid-30s, happy, somewhat-judgemental, optimist who loves being in the great outdoors and happens to have MS.

oh blah dee, oh blah dah by princessB

When I see someone struggling with a pebble, I want to hug them and say "You're not alone; I have a pebble, too."  It won't make their pain any less.  But it will make it less frightening.  Less lonely.

MS Renegade by Marie

"A Highly Opinionated Perspective on Living with Multiple Sclerosis"

Life is a Journey, Enjoy It! by Cindy

My name is Cindy, I am married, with 3 grown children, and two spoiled and well loved silky terriers Princess & Taz I re-started this blog since DX 7/29/10 with MS. I hope to use it as a journal as I set off to new adventures of my lil world that I now call "Weeble Land."

Living with Multiple Sclerosis by Diana

Diana Neutze, poet and MS survivor, shares her thoughts. 

The Cutest Chaos by Melissa

I am just an ordinary girl. I am a recovering pack-rat who now loves to organize. It has become an addiction almost. It makes me feel so good when I go through a room and make it look clean and simple! Among other things I love to bake, craft, knit, crochet and cook. I guess you could say I am a Martha Stewart wanna-be. I was diagnosed with MS in 2006 but try not to let it “own me”.

both sides now

Welcome to a blog of many faces. They are all my face, but they look different in different lights. Sometimes what you see can be pretty straight forward. Other times the light can play tricks on your eyes. You can learn many things and nothing, and whereas you can actually gather grains of truth from my frequent poetic licence, you may not want to judge too quickly. All of what you see here is true. But know that not all is completely in focus.

Pick Tammy's Brain by Tammy

I thought I would blog about my experience with MS-Multiple Sclerosis. I wanted to create a venue where my friends and family could check up on me. All are welcome!

6hundred50thousand by Jordan

"A general theory of expanding philosophy"

The MS Champion by Stephen

Hello friends! My name is Stephen. My main points of interest are music, cooking, art, but more importantly advocation and education about Multiple Sclerosis. In my blogs, I will write about stories of the trials and the victories I have gone through living with MS.

All in My Head

"my thoughts, my interests, my goals, my multiple sclerosis"

Sunny, With a Chance of Clouds by Natalie

I'm 27 years old and had been diagnosed with Multiple Sclerosis on Valentine's Day, 2006. Life as I knew it changed dramatically. From using a wheelchair for two years and learning how to walk all over again, my diagnosis has changed my life for the positively better. Having kept my disability a secret for four years, this is my story of living with a diagnosis and how I'm rising about it, embarking on a new life.

Multiple Sclerosis and Beyond

"information, thoughts and comments on multiple sclerosis"

MS, Life and Superpowers by Gav

The inane ramblings and occasionally surreal thoughts about MS, life, superpowers and such like =)

My MS Journey by Ted

I'm 56, a professional, diagnosed with secondary progressive MS in 2004, currently dealing with a self-assessed EDSS of 6.0. I was assessed and treated for CCSVI in Poland on April 29th, 2010.

Demyelinated not Destroyed by Shannon

"Giving help and hope to those living with demyelinating diseases and their loved ones"

Pip's Blog by Pip

I manage the Berkshire MS Therapy Centre (www.bmstc.org)and have an interest in any issues concerning MS and disability. My interests outside work include travel, sailing, film, theatre and music with a particular interest in guitar which I am attempting to learn!

Thoughts and Stories by Mary Ellen

But smiling helps get through the day by day problems. And besides, smiles really are contagious. I hope the one I have right now has caught on to you!

CCSVI and MS

News regarding chronic cerebrospinal venous insufficiency and MS

ePatient Connections: A Patient's View of Interacting with Pharma

Earlier this week, I traveled to Philadelphia to speak at and attend the 2010 ePatient Connections Conference. This was the 2nd year of the conference, organized by Kevin Kruse and Kru Research, bringing together lifescience companies, marketers, digital and healthcare companies, physicians and patients to discuss better ways to work together to "improve patient outcomes." 

I had submitted or pitched my own story to share at the conference many months ago and was pleased when Kevin Kruse invited me to give a special presentation.  I must admit that I felt some pride knowing that no company pushed to get me scheduled and that as an individual, I was given an equal opportunity to contribute.

As you can see from a few of these photos, my presentation focused on the interaction of pharma companies and patients online.  Engagement is a big buzz word right now and so I used that as a jumping off point.  As MS patients, we frequently see short-term projects come and go online.  Often these initiatives exist merely to provide leads for the companies.  I know that, you know that, we should all go ahead and admit it.  The companies want our contact information.  They ultimately want to sell us something.

However, sometimes the projects will provide a good service...do something good for somebody.  I know that many of my readers were sorely disappointed that I agreed to participate in the "HowIFightMS" unbranded initiative.  It was my hope that folks looking for real-life stories of people living with MS would find our videos and dig further to find our blogs.  I know it that did happen on occasion because I received emails from folks across the country in response to the project.  I was also thanked many times for creating the videos.  Made me feel good about it all.

My talk included 20 slides and not nearly all of them were photographed.  I have included the ones which were in this post.  There are a few slides which I wish had been photographed during the talk.  If they were, they didn't make it onto the flickr stream from which these photos came.

Those slides included tidbits which became the popular soundbites and recommendations from my speech. Who knew that my words would even turn into soundbites... I didn't.

Some quotes from my talk:

"Stop selling and start supporting."

"Don't fear monger or condescend."

"Trust: Build it or destroy it - your choice."

"Abandon your patient or customer group and you destroy trust in the entire pharma industry."

"Listen, talk with me, be honest and transparent, stop trying to sell me, ask what I want and give me more than I expect."

"Do good for others and patients will notice; that's the best marketing of all."

Do I Need You?

There is so much more to be shared regarding what I learned during the conference, but this is it for now.  The topic of empowered patients and the influence of ePatients online have been growing in recent years.  It is good that our voices are being represented at some of these health-related conferences. 

It was a great opportunity to connect with some influential patient leaders whom I follow online.  Fortunately, we'll have another chance to connect and discuss important topics in less than two weeks at BlogWorldExpo2010.   Las Vegas, here I come.  :)

Gilenya priced at $4000/month, 30-50% higher than MS self-injections

If you haven't seen the news yet, Novartis has announced their wholesale price for the newly-approved oral MS drug, Gilenya (aka Fingolimod).

$4,000/month or about $48,000/year

Since the packaging which was being tested in surveys was organized to hold the medication in four one-week supplies, I wonder if truly Gilenya will be priced as $1000/week....making it $52,000/year in all practicality.  [update: It seems that the per box price is set below $4000 and the annual cost is approximately $48,600 in March 2011.]  A Bloomberg article posted yesterday did quote "about $48,000" for the medication.

Novartis Gilenya MS Pill to Cost $48,000 a Year
By Eva von Schaper
Sep 30, 2010

Novartis AG’s multiple sclerosis pill Gilenya will cost $4,000 a month in the U.S., according to a company spokesman.

Novartis has set a wholesale price at about $48,000 annually, Eric Althoff, a spokesman for the Basel, Switzerland- based company, said by e-mail. The company has programs to help patients with the cost of the drug, he said.

Gilenya, the first multiple sclerosis pill on the U.S. market, will be more expensive than injectable competitors such as Biogen Idec Inc.’s Avonex, Merck KGaA’s Rebif and Teva Pharmaceutical Industries Ltd.’s Copaxone, which cost between about $2,800 and $3,200, for a standard month’s supply, according to the Web site destinationrx.com.

“Gilenya pricing is based on the value it will deliver patients, the scientific innovation it represents and our investment in studies to support the product,” Althoff said.

The U.S. Food and Drug Administration approved Gilenya on Sept. 22.

To contact the reporter on this story: Eva von Schaper in Munich at evonschaper@bloomberg.net;
To contact the editor responsible for this story: Phil Serafino at pserafino@bloomberg.net.

I'm practically at a loss of what to say, especially since I was in the process of writing an article regarding Gilenya for HealthCentral.  This news brings such disappointment and ire from within that I need to step back and take a few breaths.

Back in 2008, we were having discussions on the blog regarding the various prices which patients (or rather their insurance companies) were being charged for Tysabri infusions.  The billed amounts varied tremendously and one of the differences was related to the infusion centers themselves.  From the MS patients who shared their billed and allowed charges regarding Tysabri infusions, the average total allowed rate was $3500/infusion.  I do not know how much the price of Tysabri may have gone up in the past two years.

According to drugstore.com, a website I like to use for comparisons of cash drug prices, lists the following prices for other MS disease-modifying medications:

Copaxone:   $3403/box or $39,928/year
Rebif:          $2854/box or $36,825/year
Betaseron:   $2950/box or $34,980/year
Avonex:       $2680/box or $34,667/year

For medications which are packaged at 4-weeks supplies, I used the drugstore.com calculator to figure the yearly cost based on 13 boxes of medication.  Back in 2005, I am aware that Copaxone cost $18,000/year.  It has more than doubled since I was diagnosed with MS.

Just to try to be consistent with using numbers based on 4-week packaging, Novartis has chosen a price-point which is 30-50% higher than that of the current MS self-injectible meds.  And it is probably equivalent to the price of Tysabri infusions.  I'm sure that they did their homework and someone at Novartis knows the exact details of their calculations and comparisons.

It disappoints me considerably, too, when I read that analysts are now doubling their initial estimate of Gilenya reaching $1.4 billion in peak sales.  This just reminds me how much money pharmaceutical companies glean from the MS market overall.  It probably doesn't help my viewpoint since I struggled terribly through the patient assistance programs when I fought for affordable access to Copaxone.  Makes my stomach churn.

Novartis Gains FDA Approval for Gilenya Multiple-Sclerosis Drug
By Eva von Schaper
Sep 22, 2010

Novartis AG won U.S. regulatory approval to sell its multiple sclerosis medicine Gilenya, beating Merck KGaA in a race to market the first pill to slow the crippling disease.

The Food and Drug Administration cleared the treatment for use against relapsing forms of multiple sclerosis, the Basel, Switzerland-based company said in a statement. A doctor will have to watch patients for six hours after their first dose of Gilenya, Novartis said.

Regulators also recommend checking patients’ blood and eyes before treatment, a demand less restrictive than expected, said Karl-Heinz Koch, an analyst at Helvea SA in Zurich.

“We were like ‘Wow,’” Koch said in a telephone interview. “This is a very good outcome for Novartis. They’ll really be able to stir up the MS market.” Koch said he now believes Gilenya can achieve double his estimate of $1.4 billion in peak annual sales.

Regulators said doctors can prescribe the drug as the first treatment for MS patients, making it competitive with standard drugs such as Biogen Idec Inc.’s Avonex, Merck’s Rebif and Teva Pharmaceutical Industries Ltd.’s Copaxone. The drug “certainly has multibillion potential,” Trevor Mundel, Novartis’s head of drug development said in a telephone interview today.

Current Therapies
Multiple sclerosis affects 2.5 million people worldwide, many of whom have trouble sticking with current therapies because they’re difficult to use or have side effects, according to the National Multiple Sclerosis Society, a New York-based patient group.

Novartis fell 1 Swiss franc, or 1.8 percent, to 55.45 Swiss francs at 5:30 p.m. in Zurich trading. Merck fell 1.57 euros, or 2.2 percent, to 70.65 euros in Frankfurt, the biggest drop since July 16.

A Novartis spokesman didn’t immediately return a call seeking comment on the price of the drug. Gilenya probably will cost about $30,000 a year in the U.S., said Koch, based on the price of the existing treatments, which ranges from $20,000 to $30,000.

Novartis changed the spelling of the pill’s name to Gilenya from Gilenia during the FDA’s review.

The review, initially set for six months, was delayed by three months when Novartis said May 25 that the FDA requested additional analysis of current data. Rival medicine cladribine, from Darmstadt, Germany-based Merck, won a priority review in July, reducing to six months from 10 the time it will take the FDA to decide on approval, after the agency rejected an earlier application in November. Merck expects a decision on cladribine in the fourth quarter.

European Approval
Novartis expects European regulators to decide on Gilenya’s approval within six months. The European approval is “on track,” Mundel said.

Multiple sclerosis causes the body to attack nerve cells through the immune system. Gilenya, known by the chemical name fingolimod, and cladribine blunt the attack by targeting white blood cells that harm the protective coating of nerve cells. Gilenya keeps lymphocytes, a type of white blood cell, from being released into the immune system, while cladribine works by killing lymphocytes.

Cladribine was cleared more than a decade ago to fight leukemia and has been approved as an MS treatment in Russia and Australia. Gilenya won approval in Russia on Sept. 10.

Three studies released this year showed both pills reduce the risk of relapses and worsening disease, with the Novartis drug also providing a greater benefit than an established interferon therapy in 12 months of treatment. Though the medicines work differently, both suppress the immune system, and patients who took the drugs had higher rates of infections including herpes and shingles.

To contact the reporter on this story: Eva von Schaper in Munich at evonschaper@bloomberg.net.

To contact the editor responsible for this story: Phil Serafino at pserafino@bloomberg.net

I am excited for the MS community that the long-awaited oral pill has finally arrived.  There will certainly be more coming very soon.

Although it is the insurance companies and government payors who will carry the brunt of Gilenya's price, I'm sure that many, many patients are going to be challenged with high copays or inadequate coverage or are not insured at all.  These are the folks for whom my heart screams.  I've been there, done that....and blogged it!!

To be completely upfront and honest, I am acquainted with a few folks who are involved in marketing for Novartis.  We are connected on Twitter.  Last night I sent out a message to two of those folks and one did respond.  Although he couldn't speak regarding the pricing, he did ask me about contributing ideas for "Prescription Assistance Program Best Practices."  I thought that this was an excellent idea.

So let's turn this discussion into a proactive one.  What would be your suggestions as to how assistance programs could best be set-up, arranged, carried out, etc, etc.?  What have you learned in your own experiences with PAPs?  Please do share in the comments below.

If our ideas help to establish (or change) a system which many other MS patients will navigate, then it is worth it in my mind for us to gather these ideas together.  And, by doing it out in the open, other companies might read our feedback and take it back to the folks who can make adjustments to make the process less painful, or "hellish" as was the term I used last night.