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Clinical Trial for People with Rheumatoid Disease

February 2, 2017 in Events


Join us in the search for new treatment options for RA

For some people with moderate or severe Rheumatoid Arthritis (RA) symptoms, medications that have traditionally been used for the treatment of RA may not work well enough or may cause unwanted side effects. This study is for people whose RA has not responded well enough to previous treatment with methotrexate, and will be comparing the investigational medication with adalimumab (an approved treatment for RA) and placebo (which looks the same as the investigational medication, but contains no actual medication). The investigational medication blocks a certain protein involved in the function of immune cells, and may help to reduce inflammation and damage to the joints caused by RA.

If you live with RA, are taking methotrexate, and would like to learn more about a study, please click here.

Learn More

by KatieB

ACR 2013 Hot Topics from, One Patient’s Perspective

January 31, 2014 in Patient Input

ACR 2013 Hot Topics, from One Patient’s Perspective

RPF member Melinda Hansen reports on what she learned recently at the American College of Rheumatology scientific meeting. Between posters, exhibits, and actual sessions, there are hundreds of interesting topics covered, and Melinda brings us a summary of several topics important to people living with Rheumatoid Disease.

Melinda HBy Melinda Hansen

So much to be learned at ACR! I attended talks on a wide range of subjects, from an overview of RA treatment in 2013, to safety issues with current therapies, to current osteoporosis management, to inflammatory eye disease, to use of medical marijuana. This is my own subjective view of some of the important issues from this year’s meeting.

“Words That Heal” by Ann Curzan

I had a lovely start to my first day, going to a talk not by a rheumatologist, but by a linguist. She discussed the importance of letting patients tell their stories, in their own words, at their own pace, and said that when the provider frequently interrupts or has eyes glued to a computer screen, patients do not feel they are being heard. She also noted that since the experience of pain is not objectively measurable, clinicians need to trust what patients tell them.

Patient centered research

The growing importance of patient-centered research was mentioned in a number of talks, which is due both to an increasing awareness that yes, the patient is a rather important part of the equation – but also because health care providers are increasingly being expected to demonstrate patient outcomes. This is great for patients, and this is an excellent time for RA patients to provide the patient point of view through greater involvement in research projects.

JAK inhibitors

JAK inhibitors – tofacitinib (Xeljanz) is the only drug in this class currently on the market – are important not because they are better than other drugs, but because they offer an alternative for people who do not get better on current therapies. There are safety issues, however, and the drug is not approved in Europe because of uncertainty about risks versus benefits. The search for new JAK inhibitors targeting different pathways, with fewer adverse responses, was a hot topic and an area in which there is a lot of current research.

Personalized medicine / individualization of treatment

The science of biological research and genetics/genomics is quite complex, but what I am understanding is that as the field of medical genetics continues to progress, it may in the future be possible to better match an individual’s biochemical makeup with the drug most likely to target and treat it.

Triple therapy versus biologic therapy

This topic got huge attention throughout the meeting because of a study presented which compared triple therapy, usually with hydroxychloroquine (Plaquenil), sulfasalazine, and methotrexate to biologic therapy, with a drug like etanercept, usually also given with methotrexate. The question: how to start treatment in a patient newly diagnosed with rheumatoid disease.

The speaker arguing for triple therapy said it is based on a “3-legged stool of value” of efficacy, toxicity (more infections with biologics, for example), and cost; the speaker from Sweden argued that physicians should be look at clinical outcomes, not cost; the speaker from the U.S. counter-argued that that he is living in a dream world! It was a lively discussion.

Other issues with triple therapy were discussed. The biologics are known to have a rapid onset of action, leading to patients obtaining results more quickly. Starting two or more drugs at once means not knowing what is causing any adverse effects that might occur, but when starting step-wise, one at a time, there can be many months of delay, since the triple therapy drugs are often much slower in onset that the biologics.


Newer diagnostic testing

Traditional RA blood tests can be normal even with active RA This causes problems with diagnosis and treatment decisions. The hope is that newer tests such as the Vectra DA (and others being studied), by looking at a much wider range of biomarkers, can provide a better way to monitor disease activity and possibly help guide therapy selection. Vectra representatives emphasized that their test is not meant to be used for initial diagnosis.

Enbrel storage

New information from the makers of Enbrel: although refrigerator storage should still be “standard practice”, Enbrel can be stored at a moderate (but not hot) room temperature for up to 14 days. This is great news when trying to keep the drug cool while traveling. Of course, everyone should check with her / his pharmacist.


For reasons related to the complexity of biologic drugs, there will not be generic copies, but “biosimilars” for the RA biologic drugs: not identical to the original, but thought to possess the same properties and effects. A biosimilar for the RA drug Infliximab (Remicade) has been approved in Europe, but not yet in the United States. Most seem to think that the biosimilars may make the biologic drugs more affordable, (although this may be less than hoped, especially in this country) but that they will need to be used carefully, with close monitoring for any changes in clinical outcome.

How research studies look at response to treatment

The traditional way to evaluate response to treatment looks at what is called ACR20, ACR50, and ACR70, which means symptoms are 20%, 50% or 70% better. I was happy to see that more researchers are looking at 50% and above, together with clinical symptoms. Although there are days when I would be glad to feel even 20% better, it seems a weak measure of clinical improvement, given that for many of us, our symptoms can vary greatly, even without medication.

To read more on Melinda’s experiences at ACR – click here.

by KatieB

Patient-Driven Research, Biomarkers, and More from the ACR Meeting

January 27, 2014 in RPF News

RPF member Andrew Lumpe describes a few highlights from the recent American College of Rheumatology (ACR) annual meeting in San Diego. Andrew is a professor at Seattle Pacific University and a talented statistician who coauthored one of RPF’s recent abstracts published at ACR.

By Andrew Lumpe

Patient-driven research on the impact of physical activity

Dana-Kelly-Andrew-postersI was privileged to spend three wonderful days at the ACR scientific meeting in San Diego. The highlight was a research paper (poster) that a team from RPF presented. The goal of this study was to obtain greater understanding of the nature of RA as experienced by patients. This study involved a patient survey that contained some questions related to consequences of performing certain physical tasks and whether a recovery period followed.

The results of this study suggest an aspect of disease impact on physical functional that is not detected by a common assessment tool used by doctors and researchers, the “HAQ.” Several results of this survey indicate the existence of a “recovery period” after physical activity in people living with rheumatoid disease (RD). The survey data also indicate that patients modify activity to manage consequences of RD. Further investigation is needed to develop ways for patient outcome measures to more accurately assess rheumatoid disease activity.

It was exciting to participate in patient-driven research about RD and the goal is that such efforts will continue to inform clinicians and researchers so that diagnosis and treatment will improve.

More observations from the ACR meeting

In addition to the research paper presentation, I spent time volunteering at the RPF exhibit where I was able to meet other wonderful volunteers and speak to doctors and researchers about the patient perspective and the goals of the RPF. In between shifts working at the exhibit, I attended several excellent sessions and browsed the poster presentations. Below are several keys ideas I gleaned from the conference.

  • The information age stands to completely transform medicine and drug development.
  • There is a “patent cliff” coming soon where many current pharmaceutical companies will loose patents on drugs. The question remains about who will develop new drugs after this happens.
  • Huge online databases may be able to help identify genes connected to diseases (diagnostics) and be used to develop new drugs (therapeutics).
  • Patient self-assessments of RA symptoms align with rheumatologist assessments about 50-70% of the time. Questions remain about where they disagree.
  • There are several new RA drugs in phase III clinical trials that may make it to market soon.
  • The exhibit hall was overwhelming and pharmaceutical companies who sell popular biological medicines spend vast amounts of money on marketing at ACR.
  • Personalized medicine based on genomics and autoantibody profiles may be in the future.
  • Biomarkers for various signaling pathways may be used in future drug development.
  • Autoimmune antibody markers other than Rheumatoid factor (RF) and anti-CCP are being investigated in order to better predict Rheumatoid Arthritis diagnosis.
  • People with positive RF and Anti-CCP tests tend to have higher levels of inflammatory cytokines.
  • The lung is being investigated as a possible site of RA initiation.
  • Systemic inflammation of RA may contribute to depression.

It’s exciting that through the RPF, people actually living with the disease have the opportunity engage with health care professionals at their scientific meeting. Such interaction is critical for advancing research and ensuring the best quality care and treatments.

Read more from Andrew on his blog – click here.

Rheumatoid Awareness Day is just a week away – February 2.

This year patients and organizations across the U.S. and in other countries are observing the second ever awareness day for RD. For updates on RPF sponsored Awareness Day events – click here.

Click here to learn more about Rheumatoid Awareness Day, February 2.


RPF Presenting Research Findings at ACR 2013 Annual Meeting

October 18, 2013 in Events

American College of Rheumatology Poster Hall

Several Rheumatoid Patient Foundation (RPF) board members and volunteers will be heading to San Diego next week for the 2013 American College of Rheumatology (ACR) / Association of Rheumatology Health Professionals (ARHP) Annual Scientific Meeting. In addition to hosting an exhibit in the Exhibit Hall as we have the past two years, we’ll be participating in the scientific meeting.

This year RPF submitted two abstracts, which were accepted by ACR and will be presented during Poster Sessions on Tuesday, October 29. Each day of the meeting, research abstracts are displayed and presented on oversized posters in what is called the Poster Hall. The two abstracts to be presented by RPF contain research data taken from surveys we conducted through our community.

Thanks to all who participated in these surveys, we will be able to present findings on the actual experiences of rheumatoid patients. The data challenge conventional thinking on rheumatoid disease and will open the doors to improved understanding of the patient experience and improved care.

The findings will be presented by RPF Founder and President, Kelly Young, and abstract co-authors. Details for each session are posted below, and the full abstracts can be found on ACR’s website by clicking on the poster title below.

More of RPF at ACR

RPF members will also be speaking at an ARHP session this year on the topic of patient engagement in rheumatology care. For details please read Speaking on Patient Engagement at the ACR / ARHP Annual Meeting.

Poster Title: Patient Survey Challenges Conventional Notions Regarding Symptoms and Experiences Of People Living With Rheumatoid Arthritis
Abstract: #2273
Presenter: Young, Kelly O'Neill BA
Co-Authors: Crowson, Cynthia S. MS; Symons, Dana M. BBA
Date: Tuesday, October 29, 2013
Presenter Available: 9:00 am - 11:00 am
Poster Available: 8:30 am - 4:00 pm
Location: Exhibit Hall B2-C-D

Poster Title: Patient Survey Regarding Utility Of The Health Assessment Questionnaire Reveals An Unrecognized Aspect Of Disease Activity In Rheumatoid Arthritis: Consequences Of Physical Activity

Abstract: #2272
Presenter: Young, Kelly O'Neill BA
Co-Authors: Symons, Dana M. BBA; Lumpe, Andrew T. PhD; Crowson, Cynthia S. MS
Date: Tuesday, October 29, 2013
Presenter Available: 9:00 am - 11:00 am
Poster Available: 8:30 am - 4:00 pm
Location: Exhibit Hall B2-C-D

by KatieB

Rheumatoid Arthritis: Finding the Strength Within

August 14, 2013 in Encouragement

By Rebecca Bader, PhD

Rebecca Bader has a PhD in Materials Science and a big heart for those who suffer from Rheumatoid Disease. She is a professor at Syracuse University, where she has a lab dedicated to Rheumatoid Disease. She serves on the Rheumatoid Patient Foundation Advisory Board.

Becky Aunt Susan

As a scientist and competitive athlete, I have been told by many that I am a strong woman. I understand this perception, but I think the strongest people often go unnoticed, their voices unheard in the daily shuffle of life. My Aunt Susan has risen to the top of my list in terms of these strong people. On her behalf I would like to scream and shout until people stop their shuffle, look up, listen, and begin to understand the strength required to combat rheumatoid arthritis.

At 18, my aunt presented with “fever of unknown origin.” At the time (and time has not changed very much), the doctors knew little beyond that and struggled to make a definitive diagnosis. A year later, she was diagnosed with rheumatoid arthritis and began what has become a 40 year battle to prevent the disease from consuming her life. The surgeries began when she was in her 20s with wrist fusions and finger surgery and have culminated with toe removal, ankle fusion, and replacement of all major joints.  Those joint replacements are now failing.  There is no option of revision for my aunt who has little bone left for attachment and whose body has rebelled against her so badly that a small cut takes over a year to heal. Despite all of this, she still holds onto her independence, owning a small house in Rochester, NY and caring for her dog, Jake. That is a truly strong woman.

Becky Aunt Susan xrayWhen I became a faculty member at Syracuse University, I believed that I could use my position in academia as a platform to educate the academic community and the general population on the reality of rheumatoid arthritis.  Although I have succeeded to some extent, this has been far more of an uphill battle than I anticipated. I have seen how rheumatoid arthritis can completely alter the course of one’s life.  Yes, my aunt is independent, but on occasion the disease gets the best of her, and she mourns for the life that she wanted to have, where she could travel the world and meet people from all walks of life.  Instead, her furthest trips are typically with my mother to Wegmans grocery store; and even those short trips are fraught with stress because she has to constantly worry about being bumped by a cart or another person.

This is not something my colleagues are accustomed to thinking about. I had one colleague debate with me whether osteoarthritis or rheumatoid arthritis is worse.  Frankly, this topic is not debatable; rheumatoid arthritis wins the worst disease contest hands down.  Two other colleagues and numerous administrators have requested that I lump rheumatoid arthritis together with osteoarthritis in order to increase my chances of obtaining research funding.  I have refused, and I likely have burned some bridges by doing so. However, inspired by the strength of my aunt, I stand my ground. How will people ever learn the devastation that the disease can cause if rheumatoid “arthritis” is classified with osteoarthritis?

As I enter my 6th year in academia, I am proud to say that I have taken my aunts “pictures” (the actual picture of her with her dog Jake and the composite x-ray image illustrating all of her surgeries) to academic institutions across the country. I have not convinced everyone that rheumatoid arthritis is a disease that warrants more significant attention, but several highly educated individuals have contacted me and asked to collaborate simply because they now understand. These are the moments when I am most grateful to my aunt for inspiring me to stay the course and work hard to give a voice to these strong individuals with rheumatoid arthritis who often go unnoticed.