Friday, 23 Aug 2019

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War on RA – Part 4: Desperado – Time to Open the Gate

Do you know what the best-selling album of all time is?  Could it be Bing Crosby? U2? Fleetwood Mac? AC/DC?  I know, it’s Michael Jackson’s “Thriller” right? 

Actually it’s the Eagles Greatest Hits – it surpassed Jackson’s Thriller in August 2019 as the best-selling with a total of 36 million copies sold since it was released in 1976.

Unless you’re Dr. Wm Rigby or a musicologist, I’m assuming you didn’t catch the numerous Eagle song drops in my prior episodes on the War on RA. There were many famous Eagle tunes, including Hotel California, Peaceful Easy Feeling, Already Gone, New Kid in Town and Desperado.  

The Eagles are a Rock n Roll Hall of Fame Band.  The trek to California by Detroit’s Glenn Fry and Texas’ Don Henley, united them in Laurel Canyon where they became the “'70s answer to Lennon and McCartney”.  They became friends with Jackson Browne, and then the backup band for Linda Ronstadt, until they flexed their chops and form the Eagles - America’s best-selling band of all time.  Did you know that the movie “Almost Famous” was partly based on the Eagles and the lead role of Russell Hammond (Billy Crudup) was patterned after Glenn Fry.

The Eagles started in 1971, broke up in 1980, took a 14 year vacation and reunited in 1994 for the “Hell Freezes Over Tour” to perform and tour widely.  Despite the 14 year breakup, they reformed for a second wave that was immensely successful. 

Since they started touring again in 1994, they’ve performed nearly 600 shows, to nearly 10 million fans worldwide with about $1 billion in gross revenues. They are iconic in the music world for creating Southern California or Country Rock, for driving “classic rock” growth on radio stations, and for taking touring from big biz to mega-biz with the first >$100 concert ticket, etc.

Glenn Fry was their front man, band leader, co-composer and famed “backbone” of the band.  He was arrogant, at times difficult, mercurial, and deeply talented but was revered when people called him the Lone Arranger, Spark Plug, or the Man with the Plan.  For the band he was the host, the prima harmonizer, the master of the riff and hook and the business driver behind what made the Eagles so successful for so many years. 

Wait! Are we not Rheumatologists? Aren’t we supposed to be discussing rheumatoid arthritis? Why all these accolades and preservations over Fry and the Eagles?

The Eagles' Glenn Fry is one of many reasons why I have great angst, why I’m mad enough, and desperate enough to create this “War on RA” series. 

Glenn Fry died 3 years ago (January 2016) at the age of 67. I wrote a blog at that time called – “10 ways RA could have killed Glenn Fry”.  I wrote it because most do not know that RA can be a deadly disease or is at least a potentially devastating disease.  Many blamed his medications, the immunosuppressants as contributors to death.  Fry died from complications arising from his RA, inflammatory bowel disease and pneumonia. The blog was meant to be a sobering look at that which is seldom talked about in RA – death. Did you know that in some series, RA is seldom listed as the cause of death in RA patients; in others it can be as low as 18-27% having RA listed as the cause of death.

I was stunned, and mad. Just like I am every time a patient of mine dies, even more so when it happens unexpectedly or in someone who has RA – as this is the disease I’m supposed to be expert at. RA took away one of my musical icons. Listen to New Kid in Town, A Heartache Tonight, Ol’ 55 and Lying Eyes and maybe you’ll get it.

But you don’t have to be a music fan to know, and be humbled, by the fact that RA isn’t always responsive or easy to treat.  There are many for whom we just don’t have the right drug.  When it’s not the right drug, at the right time, in the right patient, then it’s either not good enough or an ugly outcome.  January 18, 2016 was an ugly day.  

We all have lived the lesson that bad things can happen to sick patients and they can also happen even in patients with a bad disease that is supposedly well controlled.

I don’t know the details of Mr. Fry’s last days in NYC. I do know that he had RA, complicated by IBD and that he had been treated with common therapies and biologic agents in recent years and had done well enough to tour, sing, play guitar and enjoy another era of worldwide success with his family of band mates. 

The War on RA series was instilled by Fry accomplishments; by my dis-ease over his death; and the big glaring unmet needs detailed in Parts 2 and 3.

This series is born of the need for urgency. I’m great at RA; I’m sure you are too. But we need to recognize that predictable treatment patterns and prescriptive complacency will not move the needle on RA outcomes.  

Those who manage RA and who have RA must always battle current and future adversity. I know we are doing well, so much better than we were in managing RA in the 1980’s and even the 1990’s. 

We have grown our knowledge and understanding and developed many novel treatment advances. But we are not done are we?  We are not done because we haven’t won the war. 

So as I end this fourth installment, I’ll impart a message to anyone who will listen, especially patients and those who care for and about RA patients, but also music or lay person world at large about what is and what is not RA, and what you can do.

RA is Not:

  • A lifestyle disease or an inconvenient affliction
  • A deformity; much of what is wrong with RA goes unseen by all but felt deeply and ominously by those afflicted. 
  • Not the name for all bad arthritis; as there are many (> 100) forms of arthritis that needs to be expertly diagnosed and managed.
  • A condition that can be managed by orthopedists, therapists, internists or family doctors. It is a disease that should be exclusively managed by a rheumatologist.
  • A disorder of dietary cause, and thus cannot be cured by diet, cleanses or aromatherapy or natural means.  You the patient should do all you can to be in optimum health as you battle RA, so diet and exercise and sleep are all very important. But this is a horribly complex immune attack on the joints of those stricken.  If you’re lucky it’s just a few, if not, it can be many more.
  • NOT a disease that can be cured or controlled by one drug. You don’t play golf with one club and you don’t slide under the chassis of a broken car with just one wrench. You need the right person with the right tools (or drugs). 

RA IS: 

  • A disease that has become milder in the last 40 years – presumably with earlier detection, earlier use of effective therapies and ongoing research.
  • Identifiable before the train wreck begins.  First degree relatives of someone with RA should be evaluated by a rheumatologist. If you have blood biomarkers (CCP or RF) you could be at a substantially higher risk of developing RA in the future.
  • A disease I can treat. I have the tools to make almost everyone better.  Yet this series is a call for better treatments, newer approaches, data driven options and a more substantial chance of remission if not cure.

Ill conclude with some targeted messages to all of you who are involved or listening:

RA PATIENTS – we need and want you to be smart, engaged, motivated and compliant. Compliance is based on trust, which means at the onset you will have to suspend disbelief and trust a rheumatologist long enough to see if she/he will help you.  I know this won’t be easy.  While you will start out with a great fear of the “drugs” thrown your way – you need to know, the disease is far more dangerous than any of the medicines prescribed to treat RA.  RA is the elephant, the 800 lb. Gorilla in the room; it’s King Kong and you’re Fay Wray in its grasp! Get expert help early. Quickly become the CEO of your RA - managing it should be as clear as managing your cellphone. 

RA FAMILIES – Do not let your loved ones go it alone. I am constantly shocked by the number of RA patients I see, including new RA, bad RA, flaring RA patients – who come to their visits all alone.  Patients who are sick (arthritis, cancer, surgery) need to feel supported and be supported.  I’m sure you have no idea what RA is or what to do about it – but then again neither does your loved one, friend or family member.  The course is going to be a lot less rocky if there are multiple people in the room, along for the ride, asking difficult questions, even stupid questions (there are NO stupid questions), taking notes, listening and even helping to make the tough decisions. 

PHARMA – Bless you for creating the next generation of therapies and spreading the word on what they may do.  Realize that you get but one seat on my bus ride with this patient and there are many other drugs and companies for me to consider. Because you are newer, does not mean you are better; even if you are louder! (Louder usually gets kicked off my bus).  I know you all want to get inside my head and understand my rationale for what I do. If you want that answer, get RA and come see me as a patient and we will be very clear about the choices we make – you the patient, me the rheumatologist.  It’s not my job to tell you which of my patients are best suited for your drug. To ask me that question is lazy, narrow minded and perpetuates practices and promotion based on emotion and opportunism.  More importantly, it is your job to develop new and novel drugs that have clear or a built in reason for use and rules for an augmented expectation for efficacy based on your research and convincing data.

BAND MATES AND THOSE INTERESTED – You can push too. You can push for research, better patient services, fund raising, public efforts to educate or improve the quality of life in those living with arthritis or RA.  Someone can champion this “War on RA” – why not you.

RHEUMS – I had a lot of nice, interesting and confrontational comments in the past editions of this series.  The compliments are appreciated; if I got a rise out of you or pumped you up – even better.  Many pondered what this means and where this can go. Or even what you  could do to change or make a difference – precisely what I was hoping for; except talking about it won’t help. You’ve got to come to your sense and do something about it. Lastly, those to whom I’ve caused angst or insulted by the message “we aren’t good enough” – I apologize but will still ask the question – what are you going to do in the future that will make you a better rheumatologist and your RA outcome better than that achieved in 1971, 1984, 1994 and 2016? “If you keep doing what you’re doing – you’re going to get more of what you already got”.  Are we going to improve if we don’t change? What I’m hearing are suggestions – like a) why not have a programmed toothbrush that measures inflammation and periodontal disease as both a risk factor and monitoring tool? Or b) why not have “RA boards” (like Tumor boards) that review every new patient, their testing, care and prognosis in the first 3 mos. of disease and at 12 mos.?  or c) I’m part of a group of Rheumatologists who will meet once a month over pizza to “think tank” our approaches to RA patients we just saw, etc.

The Eagles were a story about a great American band, what can happen when a group of talented people get together, with a common passion and clear direction – they can change the world.  This is what we can do in Rheumatology to change the history of RA, to make it a disease we can look back upon RA as we do with rheumatic fever, reactive arthritis, and other diseases we have conquered.

This is the fourth installment in this series devoted to the War on RA. It is a tribute to individual and group greatness and how it can inspire change.  We are depending on patients, families, the populace and rheumatologists to look forward and push forward for better outcomes in RA.  We need you to step up.

DESPERADO

Desperado,why don't you come to your senses

You been out ridin' fences for so long now

Oh, you're a hard one

I know that you got your reasons

These things that are pleasin' you

Can hurt you somehow

 

Don't you draw the Queen of Diamonds, boy

She'll beat you if she's able

You know the Queen of Hearts is always your best bet

 

Now, it seems to me some fine things

Have been laid upon your table,

But you only want the ones that you can't get

 

Desperado, oh, you ain't gettin' no younger

Your pain and your hunger, they're drivin' you home

 

And freedom, oh freedom, well that's just some people talkin'

Your prison is walking through this world all alone

 

Don't your feet get cold in the winter time?

The sky won't snow and the sun won't shine

It's hard to tell the night time from the day

You're losin' all your highs and lows;

Ain't it funny how the feeling goes away?

 

Desperado, why don't you come to your senses?

Come down from your fences; open the gate

It may be rainin', but there's a rainbow above you

You better let somebody love you, before it's too late

Writers: GLENN FREY, DON HENLEY 

 

Read War on RA - Part 3: Useless Drugs

Read War on RA - Part 2: It's All About You

Read War on RA - Part 1: Walk on the Moon

 

Disclosures: 
The author has received compensation as an advisor or consultant on this subject

Rheumatologists' Comments

One of my favorite songs, Jack! You got me humming
Jack: Thanks for this series that is thoughtful and spot on about where we need to go. Maybe regarding seeing early RA or patients not managed by a Rheumatologist, "one of these nights" I will be ''standing on a corner in Winslow, Arizona" looking for these groups. Gary

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