The Patient Voice in Clinic Trials

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IMHO, patients’ voices should be a part of the medical conversation. I am delighted to see that our friends at RheumatoidArthritis.net are doing a survey of how patients might help develop clinical trials. Even if you’ve never participated or even thought checkmark-303752_960_720about participating in a trial, I encourage you to take this quick seven-question survey. You can find it here: https://rheumatoidarthritis.net/clinical/patient-voice-clinical-trial-development/.

The results of the survey will be published on the site once the results are compiled.

Hoping you’re having a great day. Thanks for checking in.

Changes, They Are A’Coming

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I was supposed to have my latest Actemra infusion in a few days. I say “supposed to” because as we all know, plans tend to change when you have RA.

I first started on Actemra injections the middle of last year and switched to infusions about a year ago. In January, we maxed out the infusion dosage and added methotrexate to the mix and, for the first time for some time, I felt like something was finally working (again).

Like everyone, I love it when a treatment makes me feel better. But unlike most people, my system tends to build up a resistance to the treatment over time and it quits being effective. This has now happened to Actemra as it has eight other drugs before it.

I moved up my rheumatologist’s appointment to before the infusion because I couldn’t see undergoing that expensive treatment if it wasn’t going to help. I guess the good news (perhaps bad news?) was that my joints were visibly swollen and tender when I went in for my appointment yesterday. I hate it when I go in whining and both my joints and my labs look perfect.

I took my list of past drugs in with me to discuss. About the only thing not on the list is Rituxan, an infused biologic and my rheumatologist has been hesitant to recommend this for me. We talked through those reasons which I understood. And then we talked about Simponi Aria, which is the infused version of the injectable biologic, Simponi.

I had been on injectable Simponi in 2009, shortly after it had been introduced and I did well on it. However, the effects didn’t last the entire time between injections, so we moved on to the next drug. Since then Simponi Aria has been introduced giving additional treatment plan options. The plan is to keep me on the injected methotrexate and oral meloxicam as well. While we’re waiting for the insurance approval for Simponi Aria to percolate through, I’ll do a low dose of prednisone to help keep things calm.

I’m excited for the change because what we were doing wasn’t working. The only fly in the ointment is that I’ve “failed” on every other TNF-inhibitor I’ve been on (and I’ve been on all of them). There is discussion in the medical community and some evidence to indicate that failing on a TNF is an indicator that subsequent TNF inhibitors will also fail. That being said, every biologic drug is different. There are even differences within the same class of drug. Of all the drugs I’ve been on, I liked Simponi the most, so I am hopeful that Simponi Aria will work well for me this time.

If for some reason it doesn’t, I still have a rheumatologist that listens to me and is committed to my care, which is a major blessing in itself.

So those are the changes brewing in my life. I hope whatever changes that are in store for you bring health and happiness to you and yours. Thanks for checking in.

 

Reaching Limits

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There are limits, even in medicine. That is, until we break through those barriers. Read more about my recent enlightened experience at: https://rheumatoidarthritis.net/living/reaching-limits/

 

Reaching Limits

It’s the Engine, not the Caboose

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“It’s the engine, not the caboose, that kills you,” is actually a saying that’s used in Alcoholics Anonymous as a warning against taking that first drink – which can lead to the second, and third and so on. It was also used by Jack Cush, MD, a preeminent rheumatologist in a recent article. One of the themes of the article is that in focusing on the potential side effects of treatment, we forget that the greatest health risk is the disease itself.

Read the rest of this article at: https://rheumatoidarthritis.net/living/its-the-engine-not-the-caboose-that-kills-you/

He Said, She Said, NSAID

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I ran across an interesting study the other day on pain in America that was reported by Rheumatology Network. While there is some very interesting data about pain in the US, a major focus of this discussion was Non-Steroidal Anti-Inflammatory Drugs, better known as NSAIDs.

NSAIDs are a major weapon in the battle against pain as they not only help relieve pain, they also relieve inflammation. As you can imagine, a lot of people with arthritis (of all kinds) take NSAIDs. They’re available as a prescription but there are also many forms available over-the-counter (OTC) including such brand names as Advil®, Aleve®, and Motrin®1. The most commonly available NSAID is aspirin. NSAIDs are in such widespread use that in 2014, 123 million prescriptions were filled for them in the United States, according to an audit from IMS Health and one-third of the general population have used over-the-counter NSAIDs.

Even at the lower-dose OTC levels, these are powerful drugs and, as such, can have powerful side effects. While the most common are associated with stomach issues, NSAIDs also carry warnings for more serious complications including heart and kidney problems.

I found a couple of very interesting things about this study:
Read the rest of this post at: https://rheumatoidarthritis.net/living/he-said-she-said-nsaid/

RA Healthcare Costs

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One of the most daunting things about having RA (and related autoimmune diseases) is the cost of healthcare. In an effort to better understand this important topic, RheumatoidArthritis.net is conducting a survey. Please consider completing it. It will only take about 15 minutes of your time.

You can find it here: https://rheumatoidarthritis.net/news/take-the-cost-of-healthcare-survey/.

Thanks for checking in.

A Review of “Life Beyond Chronic Pain”

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I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.


I was very pleased to receive a review copy of Jaime Heidel’s Life Beyond Chronic Pain. Jamie is the author of the popular blog, I Told You I Was Sick.

While I am on a medicine-based treatment plan, there is a great deal of evidence for and I know people who have good success with a more natural-based approach to dealing with RA and other inflammatory or autoimmune diseases.

Life Beyond Chronic Pain is a short, but to-the-point “how-to” of approaching chronic pain from a holistic standpoint. Starting with some personal information about the author, it is then broken into four major sections that represents the steps of the process: Eliminate, Detoxify, Rebuild and Maintain. (This is one step beyond the standard detoxify approach of cleansing, rebuilding and maintaining.) Each section contains a liberal amount of specific, practical information along with links to research and articles that provide the background and science behind the information.

The advice presented in Life Beyond Chronic Pain is truly a holistic approach. As an example, in the Eliminate section, people are advised not only how to eliminate toxic food but also toxic cooking techniques and to rid themselves of toxic people. Each section delves into advise on healing the mind and soul — as part of helping the whole person.

I’ve explored a number of these types of guides and there are several things I like about this one.

  • First, it’s short and direct with specific information. It doesn’t spend chapters on theory or feel-good filler. It’s designed to give you what you need to address the four steps.
  • The author provides enough personal information that you can relate to her struggles — and her successes with this process.
  • It gives practical information on how to find additional resources, e.g., when searching for yoga videos, include the keywords “for chronic pain” to help you find exactly what you need.
  • It is broad based in that it doesn’t just deal with diet and it doesn’t just deal with eliminating things from your life. It gives you a rounded look at living your life in a way that may help you with your chronic pain.

I have very little negative to say but I’d be remiss if I didn’t mention a few things.

First, if you’ve done research along these lines in the past, you may not find a lot of new information. What’s refreshing about this guide is not necessarily new information, but the way the information is structured and presented in a holistic approach — not just detoxification. It’s succinct, well presented, and easy to understand with practical guidelines.

One thing I did find missing is that even though each section gave clear instructions, there aren’t clear “success” markers to let you know when you were ready to move to the next step.

While the author has apparently had health/pain issues for most or all of her life, very little is said about the investigation into other types of treatment — the guide is very focused on this one process.

Finally, in my opinion, the guide could also do with a bibliography or a list of suggested additional reading rather than just the links and references sprinkled throughout. From a structural standpoint, even though the book is short, my particular copy (which was a review copy and not the one from Amazon) could be helped by a table of contents, links or even page numbers. Several times I wanted to go back and review a section and the only way I could was to just scroll through the guide until I found what I was looking for. This may not be the case in the Amazon Kindle edition.

Overall, if you’re interested in investigating a more holistic overview to relieving your chronic pain, and/or you want the perspective of the patient rather than the medical community, this is a good place to start. The Kindle edition, which is available through Amazon, is $2.99 and is 65 pages long.

Biomarkers and Treatment Plans

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I’ve often wished for a test that could help predict if a specific drug or treatment plan was going to be successful. I was encouraged recently when I read that certain biomarkers could be used to help predict if a popular biologic, rituximab (Rituxan) would be successful.

Read more about what I learned, including a link to the study at RheumatoidArthrtis.net, here.