Arthritis FAQ

How can Vectra DA be used to help understand that your biologic is working?

Dr. Paget:
So there are a few ways of defining how people are doing. There are scales; there’s a dash score, disease activities score and there are other kinds of congeners of the dash score. People don’t do it…doctors just don’t order it. They don’t write them, they don’t measure them and they don’t because there in a very visit busy practice now in the setting of some studies those things are done routinely. The way I see Vectra as being an important addition to this whole way of treating people with rheumatoid arthritis is to have a score. People are used to scores, doctors who used to scores patients who used to scores, you know it starts with the when you’re born and you have a scale that defines how you’re doing. Uh… and all through your life you have various scores that will define whether you’re doing well or not doing well and the beauty of this is that it’s a test, it’s a test that’s been measured against many, many other groups of patients with rheumatoid arthritis from excellent centers around the world and it is a good correlation. And so it will allow the patient and the physician to understand where they are in their illness and understand why that medicines may have to be adjusted or changes made over time.

Getting to know Your Nurse Navigator

Seth Ginsberg (President of Creaky Joints):
Hello. For Creaky Joints, I’m Seth Ginsberg. Here today with another educational video, all about the nurse navigator. We’re up in Wilmington, MA today at the rheumatology internal medicine associates practice. A model group, of doctors and nurses who are passionate about taking care of their patients. We’ll go inside and we’ll meet two of those patients and we’ll understand how they engage with their nurse navigator as well as hear from her, about what we as patients can do to prepare for our visits.

Patricia T. (Rheumatoid Arthritis Patient):
I actually look forward to coming to my doctor’s appointments… which is….I think a big thing. Because I’m not gonna always feel good when I get here physically. But I know that the people; the nurses who are going to talk to me during the day, are going to make me feel better. And I walk through the door and they’re smiling and I’m smiling…and I’m happy to see them and I’m happy to talk to them; I’m happy to talk to them and I’m anxious to talk to them, because I know at the end, when I leave, I’m gonna walk out of here feeling better. Physically and mentally.

Michael T. (Rheumatoid Arthritis Patient):
To me a nurse is magic. I mean they’re absolutely incredible people.
Nurse:
“Relax now, don’t drive your blood pressure up”

Michael T. (Rheumatoid Arthritis Patient):
“You know my blood pressure is always up”

Michael T. (Rheumatoid Arthritis Patient):
You know out in the world people don’t understand for instance with rheumatoid arthritis people look at you and say “oh but you look so good” Alright? They don’t necessarily understand that you may be in tremendous pain. Ok and the simplest thing to do, pick up a coffee cup, whatever, getting in and out of a car. Um… they don’t understand that it hurts. Ok? Uh… and sometimes that can cause some problems because they think you’re lazy or whatever because there’s also uh… with RA there’s a thing called chronic fatigue syndrome, you’re tired all the time. No matter how much sleep you get you’re always tired. That’s never gonna change. The nurse in the office understands that. I mean so when you come in here, they know. And it’s like –sigh of relief- I’m home, I’m safe.

Ellen Shnidman, MS (Director of Healthcare Analytics at Rheumatology & Internal Medicine Associates):
Most of the time other than the initial consult which is by the rheumatologist and then changes of treatment course. The rheumatologist supervises everything, decides on what’s being treated and when the treatment needs to be changed, but most of the rest of the care is in the hands of a nurse. And they’re the ones who really get to know the patients and know their creaky pains; aches pains, other problems, comorbidities, even know what’s going on in their personal life. Anything that would affect the impact of the health care.

Amy McCarron (Nurse Practitioner Rheumatology & Internal Medicine Associates):
In any kind of illness, we need to be treating patients holistically in particular with cases of chronic illness such as rheumatoid arthritis and lupes. I think that this is an illness that affects every area of the patients’ life. So when we have a patient come in, we don’t want to treat just the physical symptoms that they’re having with medication and that can be overwhelming enough for them. But these patients come in and they have social issues, financial issues, emotional issues. Um… they have people at home who don’t think they look sick and don’t understand what they’re going through and they need a place to come where they’re accepted and their symptoms are understood and that they can come in and talk to somebody, who understands what they’re going through.

Patricia T. (Rheumatoid Arthritis Patient):
Many years ago when I first started going to doctors about my rheumatoid arthritis, when I would meet a nurse, it would be a very brief encounter. Uh… perhaps they would take my blood pressure, take my temperature and say they doctor will be with you shortly. I wouldn’t see them again the entire time. Now my nurse spends or my nurse navigator twenty to thirty minutes with me depending on what we would need to talk about. They still take my temperature, they still take my blood pressure, they… still ask the questions that nurses have always asked. But what they do now is ask about me personally. They want to know what’s happening in my life. Am I able to get up and move around in the morning. Am I able to do things that I need to do during the day to make my life worthwhile, to make my family’s life worthwhile. They know any situation; they’re interested in the situations that are going to be confronting me over the next month or two months and how they can address that so I feel better and that I can accomplish what I need to accomplish.

Michael T. (Rheumatoid Arthritis Patient):
The Nurse sees the patient more than the doctor does. Overtime, they actually care for the patient. They have to make a doctors’ office for instance the one that I go to, they have to make that the safe place for the patient to come. If two RA patients, but if one patient is getting married in a month and another patient got divorced last week. You deal with it in two different ways, it’s not one size fits all, and it’s this just intangible quality that these nurses have come up with to say ‘I’m going to talk with you this way but I’m going to talk to you this way. And it again gets back to the fact that they care for the patient, this matters to them. And as a patient… I like that. I appreciate the fact that they just don’t one size fits all I’m going to treat you the same way I’m going to treat the next patient. Doesn’t work like that.

Amy McCarron (Nurse Practitioner Rheumatology & Internal Medicine Associates):
I think you have to absolutely make yourself known to your nurse. I think that in our office, right down from the front desk, to the nursing staff to the providers we know that the majority of our patients by first name and when they call we know them by first name. So I think that’s a huge benefit and when the nursing staff knows you, they can help you a lot more effectively. You have a chronic illness such as rheumatoid arthritis it affects every area of your life and patients who are diagnosed with these illnesses, usually have a very um… it’s overwhelming for them in the beginning. They have a new diagnosis, they don’t understand the medications, the labs, the referrals and I think the nurses have a role in educating the patient on a lot of other levels that take off from the normal functions of a nurse.

Ellen Shnidman, MS (Director of Healthcare Analytics at Rheumatology & Internal Medicine Associates):
You know if you had an older relative with RA years ago, your fate is not going to be like their fate. You don’t see hardly anybody in wheelchairs, and you don’t even see as many walkers and canes as you would’ve seen. And that’s a testimony to the great advances in treatment that have occurred over the past 10-15 years. The biologic drugs especially insularly care, the role of the nurse supportive care and other types and… and… but particularly the great drugs that are coming down the pipeline in rheumatoid arthritis And I think that’s the most important thing for patients to know.

Patricia T. (Rheumatoid Arthritis Patient):
We know that there are new medicines on the horizon. We know there are… are… alternative therapies and without the information from our nurse navigator, we wouldn’t have any idea this was going on. Our time with our doctors are very limited and it’s not because our doctor doesn’t want to spend time with us, it’s that they’re in high demand.

Ellen Shnidman, MS (Director of Healthcare Analytics at Rheumatology & Internal Medicine Associates):
The success of the treatment in the long run depends on that realistic understanding of what you’re in for and particularly the side effects of drugs and then the expectation of improvement, how much improvement, what kind of improvement to be expected. And whose going to be the pike person in the practice that they’re going to speak to in the future, mostly the nurse not the actual rheumatologist.

Michael T. (Rheumatoid Arthritis Patient):
At the end of the day, once you finally grasp the fact that this is never going to end you have two choices. You either go down a bad road or you go down a good road. And you know what are you going to do? And uh… at the end of the day, you know I just think, you know you’re dead a long time. So you might as well just while you’re here have a good time and enjoy yourself and uh… uh… I’d like to try to spend time for instance. Um… talking with newly diagnosed patients because I am… I hope that somebody would have talked to me when I was first diagnosed and they didn’t and I kinda had to catch this all on my own.

Patricia T. (Rheumatoid Arthritis Patient):
One of the biggest accomplishments… I think that’s happened here at my doctor’s office is that my nurse navigator has helped us start a support group. And we meet monthly, we talk about nutrition, we talk about exercise, we talk about being able to be the best person you can be in every possible way. And it has helped not only myself but the dozens of people who come to our support group.

Michael T. (Rheumatoid Arthritis Patient):
Even though my hands over the years have gotten very stiff, I play the piano every day. To make myself on the… on the… one hand to do the physical, physicality associated with playing the piano but it’s the emotional and mental part that’s just as valuable to me. Uh… and that’s huge, that’s hug. I make myself try to work out as best I can everyday… some days are better than others. Obviously you can’t…uh… with a problem with RA you can’t do what you once could do. Uh… so I try to do things like that. I think when you have a chronic illness like this it’s really important to physically get out and get out and talk to people and… and… interact with people.

Patricia T. (Rheumatoid Arthritis Patient):
One of the things I tell people who have rheumatoid arthritis, is that if they are not satisfied with where they are, if they do not feel comfortable talking to their nurses. Then they need to change. There’s plenty of nurses out there who have great staffs. And one of the things we have here is an incredible staff. Women, nurses… Physician Assistants, Nurse navigators who will talk to and make you feel comfortable about what’s happening to you.
Seth Ginsberg (President of Creaky Joints):
And there you have it. An inside look at the nurse navigator and the roles that they can play in your quality of care. Our hope is that after today’s video you’re inspired to create a more meaningful and productive relationship with your doctor’s office and all the staff that are there for you. And don’t ever settle for anything but the best care possible. As always visit us online at Creakyjoints.org. Share your feedback, tell us what you’re thinking both on our website as well as on our facebook page and above all else, we hope you’re feeling good.

Rheumatoid Arthritis: Self-Injected Biologics Bring New Freedom

Dr. Charles King, MD (Rheumatologist – IMA):
The first question I ask the patients is which way do you want to take the drug. What makes most sense for you and your life.
The fears and the anticipation of using a self-injector stop a lot of people because they are afraid of needles or they’re not sure what might happen

Seth Ginsberg (President and Co-Founder of Creaky Joints):
Hi, for creaky joints I’m Seth Ginsberg. Welcoming you to another educational video. Today, all about auto injectors. See there’s a lot of information out there regarding the self-injectable biologics. But at Creaky Joints… as you know… we have been able to put together in the most authentic way possible; this information and distilled it into what you need to know. You may be asking lots of questions if your doctor, your family and friends of other Creaky Joints members and their experiences using these biologics. Today’s video hopefully will serve to help you along this decision making path. Giving you an example of what the self-injector auto injectors are all about and allowing you the opportunity to understand which one might be best for your lifestyle. You’ll meet experts including a physician, a health psychologist and of course patients talking about their experiences using these various biologics. We hope that through this video, you’ll be able to make a more informed decision, you’ll be able to have a more informed conversation with your doctor and ultimately you’ll be on the path to a better treatment protocol because you’ll understand that these self-injectors of these auto injectors, aren’t anything to be afraid of but instead something that you can incorporate into your lifestyle to make you feel better. And while you’ll understand more about the mechanics of how these auto injectors work; what’s involved in the process, and which one might be best for your lifestyle. Want you to stay engaged with our community because we know that’s just half the battle. Sometimes having the medication paid for by insurance, dealing with prior authorization and other issues are all reasons we’d like for you to check back on the creaky joints dot org website and stay in touch with us. But for now, we want you to hear from the experts, we want you to understand exactly what options are out there to treat your rheumatoid arthritis.

Dr. Laurie Ferguson, PhD (Health Psychologist):
Hi I’m Doctor Laurie Fergusson and I work for the Global Healthy Living Foundation as a health psychologist. I work with also with private patients um… who have chronic diseases. So I’ve been involved in healthcare and sort of the motivation towards healthcare for a number of years. There’s a lot of advice that says talk to your doctor. Talk to your doctor of what you’re afraid of, talk to your doctor about what the implications are of getting on a biologic and I think that’s really important advice. I also think it’s important to find some support around that. Your doctor really becomes your coach and your doctor is your trustworthy, um… one that could help point the way. But you need other people too, you really need a team. So I, I’d advise people to talk to the nurses in the office to see if there are possibly uh… support groups, if there are um… even online communities that they could join like ours which is Creaky Joints. Where you can put it on the message boards and get feedback from other people. Um… get as much information as you can. Your doctor is obviously the first one, but then you spread it out. Once you do talk to all these people you find out that it’s no big deal. It’s really just getting started, getting yourself in motion. That’s, that’s the key and sometimes to find some people who’ve already done it, that’s the most encouragement there is.

Jonathan Parker (Rheumatoid Arthritis Patient):
I’m 29 years old, I’m from Florida, I live here in New York City now. The smart inject has really changed things, initially I was on… um… the different types of medications that just weren’t as effective and with the smart inject… um… my arthritis really… uh… doesn’t affect me anymore. It’s something I don’t think about on a daily basis. It really… makes it… much less of a big deal taking your medication. It’s just a quick sting and it’s over. It’s a very… quick process, you don’t have to worry about positioning the needle or any of that sort of thing.

Dr. Laurie Ferguson, PhD (Health Psychologist):
Well that’s one of the wonderful things about self-injectors and that’s you’re taking your treatment home. Um… most people have to make that shift from the expectation that the physician, the nurse, the healthcare clinic is going to be the place that is going to take care of them. Of course they do, but what we’re seeing more and more is that people who have the illness are expected and invited to take responsibility and then get that sense of being in charge of how that treatment works.

Soumya M. Reddy, MD (NYU Seligman Center for Advanced Therapeutics):
I’m Dr. Reddy, I’m a rheumatologist and I work here at NYU hospital for joint diseases at the Seligman Center where we do a combination of clinical trials and private practice taking care of patients with all kinds of arthritis and auto-immune conditions. The technology in the way we deliver these types of biologic medications has also advanced recently and we now have different types of auto injectors for the different biologics. And this is an example of one of those auto injectors used for a biologic medication. And the injectors have now come in a way it makes it easy for patients to administer to themselves for people who have trouble using their hands as often is the case in rheumatoid arthritis and even for people that have fear of using injections because these auto injectors actually hide the needle and you actually never see it. So it makes it easier to overcome that fear using injection medication.

Dr. Laurie Ferguson, PhD (Health Psychologist):
Being in the driver seat of the treatment can be a little daunting at first. I’ve… I’ve worked with some people for whom that’s scary but that’s the first step for the anticipation and then when they actually take it, there’s a lot of freedom and there’s a sense of power and enjoyment really, to being the one who makes the decisions.

Dr. Charles King, MD (Rheumatologist – IMA):
I’m doctor Charles King, I practice in Duplo Mississippi. I’m the senior rheumatologist in a 3 man group. Um… pain, stiffness and swelling are really the hallmarks of early onset rheumatoid arthritis. Over the last several years we’ve really seen the development of a class of drugs called biological, which have revolutionized the treatment of rheumatoid arthritis. There uh… multiple mechanisms of delivery. One is the subcutaneous route of the administration where the patient actually administers themselves or has a friend or physician office administer the drug for them with a needle into the skin. The second method is an intravenous infusion so the patient has to come in, have an IV started and sits from anywhere from one to four or even eight hours in some cases to have these drugs infused. And the first question I ask the patient’s; which way do you want to take the drug; what way makes the most sense for you and your life. So if someone travels a lot or they’re a very busy person whose constantly on the go. It may not make sense to come sit for 3 or four or five hours doing IV infusional therapies. So younger more active patients will often chose to take injectable rather than infusion drugs.

Dr. Laurie Ferguson, PhD (Health Psychologist):
Uh… I think the uh… the fears in the anticipation of using a self-injector stopped a lot of people because of they’re afraid of needles or they’re not sure of what might happen. So it’s getting people through that first step or sort of over the hump to try something new to be in charge and then uh… the experience when they get used to it becomes second nature. It’s like when you are starting to think about learning to drive. The car seems overwhelming; all the things you have to do and then when you practice it a few times, you become comfortable, you become at ease.

Dr. Charles King, MD (Rheumatologist – IMA):
There are some patients who absolutely cannot or absolutely will not take or give themselves injections. They’re either afraid of needles, there’s a lot of needle phobia around or they simply cannot because they have deformities that will not allow them to use injection methods and those patients would use infusions.

Mrs. Peggy Vernon (Rheumatoid Arthritis Patient):
I’ve been on biologics for about 5 years. I came here today to have Emily give it to me because she doesn’t hurt at all. And my hands are bad and I can’t do it myself, And my husband I don’t want to give it to me because he has tried and he has his arthritis in his hands too. Luckily she doesn’t have arthritis in her hands.

Emily Gholson, LPN (Nurse Practitioner – IMA):
Since she does not have a lot of extra uh… subcutaneous tissue, I have learned and I have had feedback from my patients that say that if they can have it in their upper hip, uh… it does not hurt as bad when it goes in.

Dr. Charles King, MD (Rheumatologist – IMA):
And very clearly, patients who asked a number of questions do homework, learn about the side effects of their drugs and partner with their physicians taking an active role are in much better able to handle the Evan flow of rheumatoid arthritis than patients who are just passive about the process. It takes a little more time but in the end it pays far greater dividends and I think patients are truly enjoy that process better.

Dr. Laurie Ferguson, PhD (Health Psychologist):
One of the great thing about the creaky joints community is we really want to support people in finding the best ways to live healthier lives and that’s why we’re doing this to bring the information to help you learn some things um… get some new ways of thinking and hopefully motivate yourself to take that first step towards a healthier and pain free life.

Seth Ginsberg (President and Co-Founder of Creaky Joints):
So there you have it. All there is to know about auto injectors. Hopefully after today’s video you’ll be able to go back and talk with your doctor, talk with your family and friends about what you’ve learned here and some of the ideas that you may have about which auto injector, which biologic might be right for you. All of us, at creak joints wish you well and hope that you feel good real soon.