HealtheVoices Conference


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I think one of the best things that has come from writing this blog is the connection to other patients and bloggers. It has really underscored for me that today, more than ever before, the patient’s voice is being heard. I am also regularly overwhelmed about HealthEVoices_logo_squarethe commonality that those of us with a chronic condition share. It doesn’t seem to matter whether we have RA or diabetes or Hepatitis-C or what — so many of the challenges (and victories!) are the same.

I therefore count it as a wonderful privilege that next week I am once again able to attend the HealtheVoices conference that brings together bloggers and social media advocates from a wide range of backgrounds and who represent a multitude of chronic conditions. A major focus of the conference is to help us make the most of our patient/advocate voices and help us leverage these platforms to not only tell our individual stories but to better reach those who need to hear them. Of course, I also go to renew the wonderful friendships I have been able to make.

This conference is made possible through corporate sponsorship — sponsors who believe the patient should be a voice in the healthcare landscape. So I thank them for their vision in providing this conference and for the personal support they provide to make it possible for me to attend. Janssen Global Services is paying for my travel expenses for the conference. All thoughts and opinions expressed here are my own.

The Good News – Bad News About Triple Therapy



For whatever reason, I’ve lately been reading a lot about the effectiveness of triple therapy for rheumatoid arthritis. The triple-therapy study was first presented at the European League Against Rheumatism Congress 2013 and published online June 2013 in the New England Journal of Medicine to coincide with the presentation. Triple therapy, which consists of three well-established DMARDs: sulfasalazine (a sulfa drug), hydroxychloroquine (Plaquenil), and methotrexate, was shown to have comparable benefits to a combination biologic/methotrexate therapy. ( These benefits included disease measures, function, and radiographic progression. All this boils down to saying the triple-DMARD therapy worked as well as a biologic/methotrexate combination.

So, if one is as good as the other, what’s the excitement? In 2013, the triple DMARD therapy was estimated to be more than $10,000 less expensive per year than the biologic-based choice. Given the rising cost of health care, that difference has no doubt increased since then.

The good news?

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Surgery! Now What?



I’ve you’ve been following my site for very long, you know I’m a virtual hardware store because of all the surgery and titanium implants I’ve had. The great folks at Mango Health asked me to share some of this experience to help others who are facing surgery. You can find this article here:

Mango Health Blog:




Thank you to those whose words bring such clarity


I’d like to start this post by quoting the Orange County Register’s March 25 article (the full article can be found here):

For the CDC to issue such blanket guidelines is injudicious and irresponsible. It also displays the capricious and unpredictable nature of the CDC as the guidelines are a significant shift from the CDC position of just a few years ago. Then, it expressed great concern that not enough was being done by doctors for the pain sufferer, especially those afflicted with chronic pain.

I would then direct you to Warm Sock’s recent post on the matter. She is one of the most thoughtful and realistic bloggers in the RA space that I know. Her careful review of the situation has led her to readjust her position on the matter. Her full post can be found here:, but the following really struck a chord with me:

The fact is that prohibition didn’t work, and I don’t believe the new guidelines will work, either.

Both of these excellent pieces come in the wake of this week’s FDA’s new labeling regulations for opioid pain relievers. As Forbes says, whether they’ll have much effect isn’t clear. (

As always, I encourage you to add your voice to the conversation.


Weighty Matters


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The reasons for my weight gain are numerous and include months on prednisone, multiple surgeries (including three joint replacements, knee arthroscopy, and two spinal fusions) that kept me from being active for long periods, a stressful job that lent itself to ordered-in pizza and BBQ for the team, lots of travel and long hours that led to loads of eating out and not much healthy home cooking.

The effects of the weight are equally numerous and very dangerous. Besides the terrible toll that extra weight can have on your joints (on top of the RA damage), over the years I’ve developed high blood pressure, high cholesterol, high triglycerides, and borderline/occasional/oh-my-gosh insulin resistance and pre-diabetes.

Another important thing to consider is that fat, particularly belly fat, plays a part in developing chronic, long-lasting inflammation in the body. When you are fighting RA or other inflammatory arthritis conditions, reducing fat is a huge step in the right direction in helping control inflammation.

When I left the workforce a few months ago to focus on my health, I knew that nothing would make more difference in my life than losing the weight. Unfortunately, losing the weight generally isn’t the problem. I’ve lost weight all my life. I’ve been on so many low-calorie, low-carb, no-carb, portion-controlled, points-controlled diets that you could probably build a family of four out of the pounds I’ve lost (and regained) over the years.

But then I was talking about how I’d look in the swimsuit or getting back into my size 4’s. Now I’m talking about both the quantity and the quality of my life. And even though losing weight is harder as you get older (trust me on this) and being on all the RA drugs can actually make you GAIN weight, I have no other option.

The first thing I did was talk to my doctor who was (predictably) a major supporter of this decision. We talked about the four elements of weight loss:

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More Mammography Mayhem

Fair warning: This is not about RA and it may have way too much information for a lot of people, so this is your chance to stop reading.

When I had the cyst aspiration earlier, I specifically asked the radiologist whether or not they had found anything besides the one large cyst and he assured me they had not. I questioned this at the time because the area I was feeling seemed larger than what they described, but took reassurance from his words.

After the aspiration, I could tell the large cyst had been addressed (plus I had watched it being aspirated on the sonogram), but the other area I was feeling was unchanged. I had hoped that everything was connected and that the aspiration would address everything.

As it was time for my annual “feet-in-the-stirrups” exam, I made an appointment with my gynecologist and asked him specifically to check the area. Sure enough, there is an almond-sized cyst still in place adjacent to several smaller ones. I have no idea why this wasn’t discovered/addressed initially, but we are where we are.


So I had a very frank conversation with my doctor about the situation and whether or not to be worried about it and whether to go back for another exam and aspiration. Our combined decision is to hold off at this time. Given that the first cyst was simple and benign, there’s not a high probability that these will be any different. And with everything else I have going on in my life at the moment, I just don’t want to deal with it. I doubt that I will wait until next year’s mammogram is due, but as I have paid my deductibles for this year’s insurance will probably address it later when things calm down.

It’s always something, isn’t it?

I hope that whatever “something” is in your life is a happy occurrence. Thanks for checking in.


Our Doctors and Infusion Centers Need Our Help

I received this because I am a member of Creaky Joints, but it is an important subject for anyone who is now or may in the future receive an infusion. I apologize that it didn’t copy very well from the email, but the link should take you to the site. If you agree after reading the information, I urge you to sign the petition.

Dear CreakyJoints member,
Our friends at the rheumatologist advocacy organization Coalition for State Rheumatology Organizations (CSRO) are asking for help from patients across the country in signing their petition.
Click here to sign
The Centers for Medicare & Medicaid Services (CMS) are in charge of setting the reimbursement rate for professionals administering Medicare Part B medications including all that are infused by professionals at doctor’s offices, infusion centers, and hospitals. Essentially, CMS dictates how much professionals are paid for buying, storing and handling, and administering Medicare Part B drugs.   For years, CMS has traditionally paid at a rate of the average sales price of the drug plus six percent (also known as ASP+6%). On March 11th, CMS released a proposal that would dramatically change this payment structure. CMS wants to run a real world experiment over the next five years where half of providers will continue to receive ASP+6%. The other half will receive a lower ASP+2.5% rate plus a fixed $16.80 payment.   The part of the experiment that pays providers at ASP+2.5% is so low that it will seriously threaten many infusion centers and doctor’s offices. These places may have to close their doors and stop providing infusions. For us patients, our only option going forward would be to receive our infusions in large hospital out-patient settings. These options are often much more expensive for us.   What’s worse, CMS released this proposal without engaging with any of the stakeholders who will be impacted. This was done behind closed doors without respect for transparency or patient-centered care.   Let’s stand with our doctors and infusion centers and sign the CSRO petition telling CMS this real-world experiment is not acceptable.
The CreakyJoints team

Looking Over Our Shoulders

I wasn’t sure what to title this post, but it’s prompted by the terrible terrorist attack in Brussels yesterday. The fact that my husband and I are scheduled to be in Brussels in a few weeks on vacation didn’t help the “Oh, my God!” feeling the scenes from Brussels evoked.

It seems like many things in life, our vigilance/worry about today’s terrorist environment ebbs and flows. An attack, be it the World Trade Center with thousands of casualties or Brussels with many fewer, galvanizes us and makes us more diligent — for a while. Then life, at least in the U.S., goes on and we get distracted with work and family and holidays and daily life which doesn’t include being blown up by suicide bombers. And the threat of terrorism gets banished to a remote corner of our consciousness (again).

As I live in Dallas, yesterday, interspersed with television coverage from Brussels, were interviews from DFW Airport — one of the nation’s busiest airports and therefore no doubt a prime target. I also reminded myself that I live within a close radius of George W. and Laura Bush. (His neighborhood is much more posh than mine, but close by, nonetheless.) I also travel frequently to Las Vegas and regularly to European capitals as well as other major U.S. cities including Washington, D.C. My chances of being involved in a terrorist incident are greater than the average bear’s. (But hopefully not as great as my nephew who was attending a meeting on 9/11 at the World Trade Center Marriott hotel and barely escaped literally with just the clothes on his back. I worked in investor relations at the time and knew hundreds of people who didn’t make it.)

The news coming out of Brussels was bad enough, but it was certainly exacerbated by all the rhetoric coming out of our presidential candidates. I would almost the candidates say nothing than have them open their mouths and confirm the fact that they don’t have a clue on how to address the situation.

I don’t know the answer or probably even how to effect one if I did know. I have a few (what I think are good) ideas. They don’t include wholesale condemnation of a religious group or ethnic population. They do include more diligence and a more aggressive stance as well as greater participation by other countries.

But on a personal level, we have to be more individually diligent. For me, I need to relook at my priorities when it comes to travel and other activities. I had someone ask me today whether we were going to keep our reservations to Brussels (which is a day trip out of a longer vacation). The answer is, I don’t know. Like New York after 9/11, Brussels is going to be the safest place in Europe for a while. I just don’t know if I want to come face-to-face with the aftermath of the attacks.

I hope that you were not personally affected by the Brussels situation. If you were, I am sorry. And I am sorry for anyone who thinks that blowing up defenseless, innocent bystanders is the answer to anything. It’s simply an act of cowardice.

Thanks for checking in.

Keeping on Track with Those (Pesky) Resolutions


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Stress is bad for you and really bad if you have a chronic disease. Interestingly, the link between stress and failed resolutions is pretty strong. The folks at Mango Health asked me to provide some tips for keeping on track with resolutions. With spring being a perfect time for renewing those resolutions you made at the first of the year, I hope these will help you out. The article can be found on the Mango Health site and on their Facebook page:

Mango Health: