War On RA Part 4- Desperado Time To Open The Gate Save

The War on RA part four. Desperado, it's time to open the gate. So do you know what the best selling album of all time is? Depends on how old you are. Maybe it's Bing Crosby.

What about u two? Rumors and Fleetwood Mac would be a good guess. ACDC is surprisingly high on the list. I know. It's Michael Jackson.

Thriller. It's gotta be the answer. Right? Wrong. August 2019, The Eagles' Greatest Hits surpasses all of them with 36,000,000 copies sold since it was released in 1976.

So unless you're Doctor. William Rigby or a musicologist, I'm assuming you didn't catch the fact that I've been putting Eagle song drops throughout these three editions of The War on RA. You know, there are a lot of good titles, and I put them in there for good reason. Songs like Hotel California, Peaceful Easy Feeling, Already Gone, New Kid in Town, and even Desperado. So why?

Well, the Eagles, they're certainly a rock and roll hall of fame band. Started with the trek of Detroit's Glenn Frey and Texas's, Don Henley to California where they met up and lived together in Laurel Canyon. They became the seventies answer to Lennon and McCartney. They became fast friends with people like Jackson Brown, the Byrds, John David Sather, that whole LA Southern California rock thing. Joni Mitchell was in there.

They became the backup band for Linda Ronstadt. They were the stone ponies. And then ultimately, after not too long doing that, they flexed their chops and set out on their own to form the Eagles. They became America's best selling band, the best selling band of all time. Did you know that the movie Almost Famous directed by and written by Cameron Crowe was really based on the Eagles, at least in part, and that the lead character, Russell Hammond, was sort of patterned after Glenn Fry.

The Eagles started out in 1971, broke up in 1980, had tremendous success in that short run. They took a fourteen year vacation and then reunited in 1994 for the Hell Freezes Over tour, referring to Don Henley, who said when they broke up, We will not be getting together until hell freezes over. They went on to perform widely, in the next years that followed. Despite their fourteen year breakup, they had tremendous success, especially in the second wave of notoriety. Since they started touring in 1994, they did almost 600 shows, were seen by 10,000,000 fans, and brought in about $1,000,000,000 in gross revenue.

They are iconic in the world of music for many reasons, Southern rock, country rock, driving classic rock on radio stations, and making touring not just a big business, but a mega business. They were the first band to introduce the over $100 ticket for a concert. Glenn Frey was their front man, their band leader, their co composer. He was the backbone of the band. He was arrogant.

He was at times difficult. He was mercurial. Everyone says he was deeply talented. But he was revered when people referred to him as the lone arranger, spark plug, the man with a plan. For the band, he was the host, the harmonizer, the master of the riff or the hook, and he was the business driver that led to what was incredible success for the Eagles for so many years.

Why am I talking about the Eagles? What's the deal here? Are we not rheumatologists? Isn't this supposed to be the war on RA? He's perseverating forever about this band.

Get over it. Well, the reason I'm doing this is I have a great deal of angst, over Glenn Frey. He's the one who made me mad enough and desperate enough to write this war on RA series. Glenn Frey died three years ago, in January 2016. He died at the age of 67.

He had rheumatoid arthritis. He died of rheumatoid arthritis, complications of that and inflammatory bowel disease and pneumonia. He died in New York City. The day after he died, I wrote a blog called 10 ways RA could have killed Glenn Frey. I wrote it because most people did not know that RA could be not only a deadly disease, but a devastating disease.

Many blames his treatments, his immunosuppressants for his death. And again, he died from complications of the disease, but, not so clear that it was his medicines. It was meant to be a sobering look at what is seldom talked about in RA, and that is death and bad outcomes. Do you know that in some series, RA is listed as the cause of death in almost nobody? And in other series, when it's high, it's eighteen to twenty seven percent.

A lot of people die because of RA and much more so than eighteen to twenty seven percent. At the time, I was stunned and a little bit mad, and that's why I wrote the blog, which I thought was a good one. But I got mad just like I get mad every time one of my patients dies unexpectedly or from RA. You know, that's the disease that I'm the expert at, and I'm supposed to know what I'm doing. R.

Took away one of my musical icons. And why am I so fixed on this? I guess, you know, a lot of old white guys have like their favorite bands, Bob Dylan, who could explain that? Mine is the Eagles and Glenn Frey. Listen to New Kid in Town, Heartache Tonight, 55, or Lion Eyes, and maybe you'll get it.

But you don't have to be a music fan to know and to be humbled by the fact that RA isn't always easy to treat and isn't always responsive. Therefore, many patients, there are many patients 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, well then we have two outcomes. It's either not good enough or an ugly outcome. January 1836 was an ugly day.

And I know we have this lesson that we get throughout medicine that, you know, bad things happen to sick patients. Heck even bad things happen when a patient has a bad disease, it's supposedly well controlled, still things can go wrong. And presumably that's what happened with Mr. Fry. I don't know the details of his death in New York City on that day.

I do know he had rheumatoid arthritis. I do know he had IBD. He had a pulmonary demise. He was supposed to have, bowel surgery at some point that delayed, him and the band getting, Kennedy Center's honors. But in the many years preceding that, he had RA.

He was treated with conventional drugs and biologic drugs. And he didn't always have an easy time, but he did well enough to tour, sing, play guitar, and enjoy this gigantic era of success after they reunited, when it was appreciated by their families and certainly by bandmates. So the war in RA was sort of instilled by his accomplishments, by my dis ease with his death, and by the big glaring unmet needs that we detailed in prior episodes of The Warren RA. This series is born of the need for urgency. I'm a graded RA, you're a graded RA, but we need to recognize that predictable treatment patterns and prescriptive complacency is not going to move the needle on RA outcomes.

It is not going to get us better in the future. Those who manage RA, those who have RA, are going to have to deal with either current or future adversity. That's why this is a tough disease. I know we're doing well. We're doing better than we did in the eighties and the nineties.

We have a great deal of understanding, a great deal of knowledge, and we have new novel therapies, but we're not done, are we? If we were, we wouldn't need more. If we were done, we wouldn't say there's still an unmet need in RA. We're not done because we haven't yet won the war. So, this is the fourth installment on this series, there might be more.

I'll impart, several messages to anyone who will listen, especially those who care for RA, those who have RA, the music and layperson world at large who may want to know more about this disease. So what can we say about RA? RA is not a lifestyle disease. It is not an inconvenient affliction. I'm surprised when people talk about it sort of in a very pedestrian sort of way.

RA is not a deformity. People with ugly hands and deformities is not RA. It's actually seldom RA. What goes on in RA is usually not what's seen. What goes on in RA is deeply felt and honestly felt by those who are afflicted with the disease.

It goes on beneath the skin, beneath any deformity you may see. It's not the cause of all bad arthritis. There's over a 100 different forms of arthritis that need to be expertly diagnosed and expertly treated. It's not a condition that can be managed by orthopedists, physiatrists, naturalists, internists, primary care doctors, other specialists. It is a disease that should be exclusively managed, if not diagnosed by experts in the field.

They're rheumatologists. I'm a rheumatologist. We spend our life working on getting better at this disease. It is not a disorder of dietary cause, which means it can't be treated by diet or by cleanses or by aroma therapy. We certainly want you, the RA patient, to be in the best health possible.

Possible. So diet, exercise, and all other measures are important. But realize RA is a horribly complex immune attack on the joints. If you're lucky, it's a few joints. If you're really unlucky, and many are, it's many joints and the outcomes here are ugly, and there's no time to be had with what is over the counter therapy or something can do on their own after reading on the Internet for an hour.

Again, it's not that simple. It's not a disease that can be treated with just one drug. You don't play golf with one club. You don't slide under the chassis of your Thunderbird hoping you can fix it with just one wrench. You need the right person who has the right tools, and that's many tools, including drugs.

What is RA? RA is a disease that's become milder over the last forty years, thankfully, presumably because of earlier detection, earlier use of aggressive therapy, new research, new drugs, the search for what is next, what is better in RA. RA is identifiable often before the train wreck begins. So if you're someone who's a first degree relative of someone with RA, you should get seen by a rheumatologist. You should have a blood test for CCP and rheumatoid factor to find out if you're at higher risk of developing RA.

There's a whole new field called preclinical RA, and the earlier we make this diagnosis, the better off the outcomes for that individual are going to be. RA is a disease that I treat. I have the tools to make almost everyone better. And as much as I'm certain of that, I know by writing this series, I'm not good enough. I think we can all be better.

We need better treatments. We need newer approaches. We need data driven options. And we need better chances at a substantial remission for all, and hopefully someday a cure. I'm going to end this with some targeted messaging for all of you who have watched this series or read this series.

First, to rheumatoid arthritis patients. We need and want you to be a really smart patient. You got to be engaged. You got to be motivated. If knowledge is anything, it will lead to better treatment and better compliance.

Compliance meaning following instructions or taking the advice or trying a medicine is really based on trust. When you start out with this disease, you don't have a lot of time. So you almost have to suspend your distrust or disbeliefs and actually identify a person who can treat you, a rheumatologist to whom you can give trust and give him a chance or her a chance to treat you and make you better if they don't move on. Someone says they can't help you, leave them in a heartbeat and find someone who can. This is not going to be easy.

The biggest problem early on is sort of your concerns about not just the disease, what's going happen with me, how long is this going to go on? What about all these drugs that keep throwing your way? Patients are immensely afraid of the drugs that we send their way. You need to know, and believe me, I've been doing this for almost forty years, that it's not the drugs that you should be worried about. It's the disease.

Rheumatoid arthritis, it's the elephant in the room. It's the 800 pound gorilla. It's the King Kong and your Feyre. It's got you in its grasp and it's not going to be kind like it is in the movie. The question is, what are you going to do?

You need help early. Again, you have to become the CEO of your RA and its care. You should manage it as easily as you manage your cell phone or as easily as you understand YouTube. What about families? Number one, don't let your loved ones go it alone.

I'm constantly amazed at how many of my patients come in and see me alone by themselves. New RA, bad RA, flares of rheumatoid arthritis, they come alone. Any patient, whether it's cancer, surgery, arthritis, RA, they need to be supported. They need to feel supported. Someone should help them, someone which should go with them.

It's always better to have two, four, or six ears and eyes to know what's going on. I'm sure you have no idea what rheumatoid arthritis is or what to do about it, so you feel useless. Believe me, the patient also is in the same boat and the two of you together have a better chance than any one of you alone. So again, your loved one, your friend, your family member, support them, be with them, make sure that they have your help and support. The course is going to be a lot less rocky if there are multiple people in the room going along for the ride, asking the difficult questions, asking the stupid questions, and you know there are no stupid questions, Questions that clarify are brilliant.

Take notes, listen, and help to make the tough decisions if that's what's required. Next, pharma. Those are that's pharma. Those of you who work for the pharmaceutical business. Bless you for creating the next generation of therapies and spreading the word on what they may do.

This has been gigantically important in the success of rheumatoid arthritis over the years. But realize you get one seat on my bus that's driving this patient towards a better outcome. There are many other companies and many other drugs that are on the bus. And again, you want me to consider you, but because you're newer doesn't mean you're better, even if you're louder. If you're louder, you're usually going get kicked off the bus, at least my bus.

I know all of you want to get inside my head and understand my rationale for prescribing what I prescribe. But if you want that kind of answer, get rheumatoid arthritis, come and see me as a patient, and we will be very clear together about the rationale for the next choice of therapy that we'll make together. To ask me the question about, you know, what patient is best suited for your drug is sort of lazy, narrow minded, and perpetuates practices and promotions that really are based on emotion and opportunism, and not really on what I need, which is data and proof. Your job is to develop new drugs and novel drugs that have a clear reason to use them, and have a built in mechanism for which I can have an augmented expectation of efficacy, and that expectation is based on research and data. Other people, bandmates and those who are interested in RA.

You can push here too. You can play a role. You can push for research, better patient services, funding, public efforts to improve and educate the quality of life of those who live with RA. Someone has to champion this war on RA and lead to the next greatest outcome. Why not you?

Lastly, rheumatologists. I've had a lot of very nice and very interesting and some confrontational comments about this series and some of my declarations about how we're not doing good enough. The compliments are certainly appreciated. I certainly if I got a rise out of you or pumped you up, better. Many of you pondered what this means, and where this can go or even what you could do to make a difference.

This is precisely what I was hoping to do, except talking about this is not going to help. You've got to come to your senses. You've got to actually do something about this. Lastly, those of you for whom I've created angst or believe I've insulted your capabilities by suggesting we're not always good enough, I apologize for the insult, but I'm still going to ask the question. If you keep doing what you're doing, are you not going to get more of what you've already got?

That's I think why we need change. So if we don't improve, how are we going to change? If we don't change, how is RARE going to actually have better outcomes? What I'm not hearing are suggestions like, why not have a programmed toothbrush that measures inflammation and periodontal disease that can be used as a risk factor and a monitoring tool in rheumatoid arthritis? Why don't I hear about RA boards, like tumor boards in cancer care, where we review every new patient with RA, especially in the first three months, and about their presentation, testing, care, prognosis, and then revisit that patient's progress in six or twelve months.

Why am I not hearing about rheumatologists saying, Hey, I'm getting together with a group of rheumatologists in my town, and we're going to meet once a month over pizza and beer to think tank our approaches to RA and just see what we might do differently when we share our ideas and approaches. Approaches. You know, the Eagles were a great story about a great American band. What can happen when a group of talented people get together in just the right time, with just the right skills, with a common passion and clear direction? They can change the world.

They can set records. This is what we can do in rheumatology if we're to change the history of RA and its outcomes. I'd like to have a future where we can look back and talk about RA as we do now when we talk about rheumatic fever, reactive arthritis, and diseases that we no longer have to worry about. Desperado, time to get off the fence.