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I was THRILLED to read this article and leave a positive comment about the accurate coverage of the disease, as did many others. Thank you Kelly and Jose.
Thanks for the update, Kelly.
Thanks for this! Great news story!
What a great piece! Bravo, Jose Martinez! and…as always…Bravo to my favorite, dedicated, and truly amazing Warrior Kelly. I did comment on KPCC’s site, and I’ll share this all over the place. Wouldn’t it be great if this story was picked up for NPR’s national broadcast? I wonder if we can make that happen. hmmm…
What a wonderful story! I posted a comment on the site.
Thanks for sharing and all your work Kelly.
I was overcome with gratitude while listening, knowing that someone was finally doing an honest story on Rheumatoid Disease. Thank you Kelly and Jose!
Best News i have heard in a very long time , It feels like my own fight with Rheunatoid Arthritis.
Thanks Kelly .
Wonderful. Thank you, Jose Martínez!
that was a fantastic story! Will share everywhere.
Great radio segment! thank you for sharing. I am 32 and diagnosed about 8 months ago, its been a roller coaster ride thats for sure. I have chosen not to take medication and to push through the pain trying different holistic treatments, mostly nutrition therapy. I would love to help drive awareness in Australia for RA.
The article was amazing. I posted a comment on KPCC’s website. It made me cry, but it was so nice to hear a reporter getting the story right. I’m sorry that his mother suffers, but it gave him a unique perspective on our story. THANKS JOSE!!!
Very excellent reporting on the reality of RD. I also enjoyed your talk with NPR. The tears and pain expressed by Jose’s Mother really hit home. Thanks so much Kelly for your wonderful work that touches so many of us struggling to win this battle!
Wow! I guess I have never actually heard someone, outside of my partner & Dr., actually talk, no make that VALIDATE the battle. I am surprised at how emotional it was to just hear someone in the media, actually talk about RA. Thank you so much for everything you are doing!
I nearly became teary listening to this but am so thankful that our stories can be heard & acknowledged. As a mum with young children & one who frequently becomes hospitalised due to RA complications, I particularly relate to the young mum interviewed here, I also like that our resilience & joyful approach to life was commented on. Today I will keeo on smiling & walk with my head held up even higher! Thankyou
Yea, I agree..this was a great story. I had a great experience on Rheumatoid Awareness Day. My children and grandchildren took me out to breakfast to celebrate the day. My son (34) made a toast to recognize my rheumatoid and all that I go through with the hopes for a cure one day. They also gave me purple and yellow flowers. It meant so much to me. They get it……as much as it is possiblle.
Thank you for sharing that! Awesome!!
My RA was discovered when I had an x-ray on my right foot because I had such pain I thought it was broken. Lucky for me the podiatrist was right on top of it and got me an appointment with a my Rheumatologist, who I still see 15 years later.
Funny my right foot barely bothers me anymore, but the left is a constant source of pain.
Jose’s mother had me tearing up. It’s the mirror image of me. I think everyone who has RA has had that breakdown where you think “is this it”? This is all I have to look forward too? Not only is it NOT going to get better, but it’s going to get worse?! IT really makes you look at your future. At the end of the day all you can do is keep going. What choice do we have. Not many right now but hopefully someday if not for me but for my kids there will be more. Thank you Kelly Jose and his Mom. Keep the faith.
This radio broadcast should be heard by EVERYONE!! I can so relate to both of the women interviewed. Huge thanks to Jose Martinez for speaking out on our behalf.
I am a relative newcomer to your website which I found by a google search.
After listening to the piece by Jose and his mother I was struck by such a feeling of love and compassion. I also identified so deeply with hearing the complex feelings of despair, depression and pain we feel at different times throughout our disease process. However, we all seem to say to ourselves “I can go on”. Some days (or years) are awful, and some feel like disease free!
Thank you for educating people through the radio. Thank you Jose and mother for allowing us into your intimate circle.
Thank you Kelly . I have sent this to my children.
Here is another article I was very pleased to see about RA, in the New York Times no less. I had heard of leaky gut before but never related it to RA. I can’t wait to see my doc’s response to my questions about RA and leaky gut. I’ll bet some eye rolling will be involved.
http://www.nytimes.com/2013/02/03/magazine/the-boy-with-a-thorn-in-his-joints.html?ref=magazine&_r=1&
Great radio segment by Jose, thanks for sharing!
I can not begin to share with all of you, the tears and the emotions I’ve felt the past few days, knowing just how much this story was needed and knowing that it touched so many of you. I feel honored to have been part of it and am so greatful to Jose for realizing just how important spreading Rheumatoid Disease awareness is. Kelly, you are absolutley amazing..thank you so much for everything you do and all the time you put into this..I wish there was one of you in every city!
Wishing you all peace…
I just thanked Jose Martinez for that wonderful piece! Thank you too Kelly for being our advocate and all you do!
I realized, after listening to Jose’s audio, that I really don’t talk about my RA…what it is and how it effects me and others who suffer. I think mostly because people don’t understand what it is and just as we all know think it’s like the tylenol commercials. Pop an over the counter pill and all will be fine. Or as in the audio/article ‘you don’t look bad’. It’s not their fault…Kelly has shown us and we have seen ourselves that even many medical professionals don’t know what it is. I can’t expect empathy or sympathy when I am feeling badly if I don’t even tell people I have it or educate them on what it really is. SO….I posted a link to this audio on my FB page asking my 300+ FB friends to take a moment to listen and learn. This is a great opportunity to get the word out and help our friends and family understand the truth about what RA is!!
I was thrilled with the article and more than happy to leave a comment. Kelly, you are amazing and an inspiration to us all. THANK YOU!!
Wow i feel so lucky. I was so scared 2 months ago. My labs were crazy high RA over 969 i know it’s sounds crazy high. my ESR 58, CCP 116, others normal. inc CMP CRP..
I am on plaquenil 200 mg 2 times daily for 2 months..My new labs show RA down to 649, still very high, and ESR was only 4 hooray!! rest normal..and i feel good..nothing like what most of you are going through..have been close but not as bad..
I have also been tested for Hep c Non react or negative forgot what it said, also Ana is negative.
Does anyone know if my ESr being 4 means remission? i don’t see my rhemy Dr till next week.and that’s because i called..for my results and asked for and explanation of my tests..I am hopeful and grateful. I do know this can change since i was recently diagnosed..but think i have had it for yrs..Any info appreciated i google and get different confusing info..but here it seems like you all care and help each other which is so comforting…Good luck all of you!!!
Hi Joni.
“Remission” is a very tricky concept. For me, my CRP and ESR have always been normal- which is known to occur in people with RA. I have had swollen joints that come and go but consistently tender joints, pain, and stiffness and now cervical spine issues. MY CCP and RF have always been high and positive. On ultrasound, there was joint erosions evident of both the hands and feet when I was first diagnosed a year ago. It’s my understanding that even if RF and CCP numbers change, that is not a marker that is used to track if the disease goes into remission. So for me, I would want to see that MRI and ultrasounds show no new joint erosions, on physical examination- my inflamed/tender joints are gone or <1, stiffness is gone, fatigue is gone, pain is gone. There is also the idea that this absence of disease needs to last for at least 6 months while off medications to meet criteria for remission. I have read that it is important to SLOWLY taper medications once low or no disease activity is detected.
Here's a great quote from the Shammas 2010 article http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2927687/:
“Defining remission, however, has remained a challenge. With varying definitions of what constitutes remission…The current definitions of remission have major limitations. A patient can have tender and swollen joints and still meet most criteria for remission. Furthermore, it also has been shown that subclinical inflammation may be present on imaging (MRI, ultrasounds) despite the absence of clinical findings of disease activity, which could explain continuing joint damage despite a remission state. This continued progression of disease suggests that RA patients are not achieving true remission. If remission is defined as the complete absence of disease activity, these findings question whether remission is currently an achievable target. A more realistic treatment expectation in clinical practice may be to achieve minimal disease activity rather than complete absence of disease. Telling patients with RA that they are in remission may lead to periods of undertreatment and give patients (and physicians) a false sense of security, as patients are still at risk of developing deformities. With improved therapeutic management and medication development, perhaps remission can be a realistic goal in the future. Many questions remain unanswered. Should remission be defined as the complete absence of disease, including signs, symptoms, inflammatory markers, and imaging? Should it apply to a moment in time or require a defined duration or permanent cure? Should remission permit treatment or require a drug-free state? As previously mentioned, a combined ACR and EULAR committee is attempting to redefine remission in RA and to reach a consensus as to how to apply the definition to clinical trials and practice. Many of these same questions were proposed and discussed. The committee concluded that the new definition should be strict, based on no or very low disease activity, and that remission should be defined independent of treatment, time course, and long-term outcomes such as radiographic damage. Variables deemed to be most important were tender joint count (with more joints being included), swollen joint count, and acute-phase reactants. A research agenda and subsequent meetings were planned to further investigate how to define remission [5••]. At the present time, when planning or evaluating RA therapeutic outcomes, it is important to carefully assess the precise definition of what is considered to be remission. A consensus definition of remission will help us evaluate outcomes of clinical trials and to establish treatment targets for practice”.
Here’s some additional reading on remission including the ACR/ EULAR article discussed above:
Click on the first citation to download the pdf by Felson 2011: http://www.google.com/search?client=safari&rls=en&q=Felson+2011+ACR%2FEULAR&ie=UTF-8&oe=UTF-8
http://www.google.com/url?sa=t&rct=j&q&esrc=s&source=web&cd=1&ved=0CDcQFjAA&url=http%3A%2F%2Fwww.rheumatology.org%2Fpractice%2Fclinical%2Fforms%2FRADAM-May%25202012-AC%26R.pdf&ei=62waUYz8Os3siQK-7oHABA&usg=AFQjCNHH1PQTNcbrQ8Ei2s7JUdzTyYsMgQ&bvm=bv.42261806%2Cd.cGE
Sally thank you for your response, I also had a cervical fusion. which i think might be a reason my Ra is so high. My RA Dr has not done any x-rays on hands or elsewhere. which surprises me because he wanted me on MTX 7.5 with my Plaquenil. I choose to use just Plaqueil first, and it seems to be doing great along with diet and supplements. I just was hoping ESR dropping was remission, which i think is possible with what you said about joint tenderness. and absence of disease. Mine has gotten 80 % better. I will do more research on all the great information you gave me also..Hope you are doing well.Again thank you so much, for you responce. It’s very good information.. Joni