As biosimilars become more of our treatment landscape, we’re learning more about how patient (and physician) education has on the perceived effect of these new medications. A nocebo effect (unlike a “placebo”) is when a patient has a negative view of the treatment which impacts the outcome. The nocebo effect is showing up with biosimilars. Read more about this in my article for rheumatoidarthritis.net here:
Nothing says “holidays” like tradition. My 12 Days of RA is the one of the few holiday traditions I still maintain. I hope you enjoy it. Wishing you all the best for whatever holidays you celebrate this time of year (or avoid as I do). May the new year bring all of us health and happiness.
On the twelfth day of Christmas, RA brought to me:
12 joints a-flaring,
11 scripts a-filling,
10 toes a-throbbing,
9 copays pending,
8 workdays missing,
7 doctors billing,
6 X-rays to be taken,
5 hours sleep!
4 side effects,
3 new tests,
2 swollen knees,
And a new D-M-A-R-D.
“And God bless us, every one.” Tim Cratchit, A Christmas Carol by Charles Dickens
Things are looking up — or at least not looking bad medically in my life at the moment. Updates since my last personal post:
- Really, really good news! I went to a different infusion center (this one at the hospital) to see if they could start an IV so I could get my Simponi Aria infusion. I haven’t had a full infusion since July because they haven’t been able to get an IV started (though Lord knows they’ve tried). I’ve managed with Simponi injections along with my weekly MTX injection and the occasional prednisone tablet. While it’s the same medication in both the injection and infused forms, the injection is not the right dose for me, so I haven’t had the full benefit treatment. The good news is that they were able to start the IV (after three tries) and administer the infusion. I feel better already! This also means that we won’t have to install a port (at least not at this point).
- More good news from the MRI on my spine. My close friend paraphrased the news as my “… evolution into an invertebrate is coming along swimmingly.” The happy news is that I was afraid that I would need surgery, but that’s not the case. I tend to gloss over the questionable news that my spine does show major arthritic degeneration and there are several levels where the disc is either completely gone (bone against bone) or is barely there. But because nothing is bulging into my spinal cord or impinging on any nerves, I don’t need surgical intervention. I’ll just evolve into a spineless wonder (as my friend pointed out). The degeneration is caused by RA and I am doing what I can to combat that.
- The esophagus situation is one of those things I’m just going to live with and work around. We increased a medication but with little effect. I’ve just learned to eat carefully as well as avoid a lot of carbonated beverages. I can’t, for example, eat things with a lot of bread content — like a sandwich on ciabatta bread — because it literally gets stuck. But with a little thought about what I eat and being careful about how I eat it, I’m managing. In fact, this might be a blessing in disguise.
Famous last words, but right now life is fairly calm in my world. I am hopeful for a calm holiday season and not too many extra pounds. May your hopes and wishes for this coming holiday also come true. Thanks for checking in.
I get my flu shot every year. I recently read a study that suggests stopping methotrexate for a couple weeks after you get your shot can make the vaccine more effective. Will this really help protect you against the flu? Or is it an invitation for a flare?
I discuss this topic in my article for rheumatoidarthritis.net here: https://rheumatoidarthritis.net/living/flu-or-flare-or-neither/.
Wishing you all a holiday season full of blessings. While I hate RA, I am so thankful for the many wonderful people that have come into my life because of this disease. This includes all of you who read my blog.
As a small child, I used to watch the old-time Western serials. After watching a scene with the hero sheriff and the bad guy, the narrator would change the scene with the announcement, “… and now back at the ranch” to show what was happening at the home front.
I’ve been so busy with travels that I realized quite a lot has happened since I last published a personal update on my life with RA. In keeping with our movie theme, here is the highlights reel:
- I posted last about nuclear imaging to investigate ongoing pain in my knee, which (thankfully) showed no infection or loosening of my artificial knee. The steroid injection my doctor gave me has worked well and I’m back to walking. Right now I’m only hitting a “maintenance” two-mile distance, but hope to work my way back to the four-mile routine over the next couple of weeks.
- However, the imaging did show increased arthritis in my right shoulder (my left one has been replaced). A visit to my shoulder doc shows bone-on-bone degeneration in my right shoulder. We’ve known for a while that shoulder is also headed for a replacement, but it looks like it may be sooner rather than later. I’m hoping to delay it until after the new year.
- The nuclear imaging also showed some concerning changes in my spine. I had an MRI yesterday to get a better assessment of what those issues are. I see my neurosurgeon next week to go over the results. I don’t think there will be anything that needs immediate surgery, I’m more concerned about how quickly things are worsening.
- I’ve posted that I’ve been on Simponi Aria (the infused version of Simponi) since last December and have been doing very well on it. This successful treatment plan has been complicated by problems starting an IV. As a result, I haven’t had an infusion since last July, even though I’m supposed to have them every six weeks. (I’ve now missed two.) For various reasons, the injectable Simponi isn’t as good of an option for me, although I’ve been “making do” with some injectable samples until we can get this figured out. I’ll spare you the details, but it’s been a convoluted mess including the fact that Medicare will pay 100% for the infusion but only a portion of the injectable — even though it’s the same drug and the injectable is less expensive. I have actually had other people successfully start an IV on me (including my MRI with contrast yesterday), so my doctor has suggested we switch infusion providers to see if that makes a difference. If not, I will probably get a port installed — which is no one’s first choice but will keep me on my treatment plan.
- No real news on the esophagus front. We did adjust one medication I’m already on (calcium channel blocker) that’s supposed to help, but hasn’t. In the meantime, I’ve learned to live/eat around the situation. I see that doctor right before Thanksgiving. With everything else I’ve got going on, I think that’s the least of my worries and expect to just live with the situation until it gets to the point of really having to deal with it.
When my husband and I got married (almost 22 years ago now), I told him that he might not always be happy but he darn well would never be bored. I sort of feel that same way with RA. I can’t say that I’ve EVER been happy with RA, but you can tell with what’s been happening just these last few weeks, I’ve also never been bored. (Right now a little boredom would be a good thing!)
I hope whatever’s happening at your ranch is a good thing. Thanks for checking in.
The great folks at RheumatoidArthritis.net have published their annual survey on RA. More than 3,000 people responded, describing what life is like with RA in 2017. You can find this enlightening information here: https://rheumatoidarthritis.net/infographic/ra-not-just-joints-or-bones-but-so-much-more/
I’ve been seething since I read Prime Therapeutics’ October 17 news release asserting that patients are being prescribed biologics outside of American College of Rheumatology (ACR) guidelines. The referenced Prime Therapeutic reports assert that patients are being switched from conventional DMARDs to more-expensive biologic treatments before the DMARD therapy is given a proper chance to work (as much as 24 weeks – or almost six months). The report concludes this has caused an unwarranted higher total cost of care for RA patients. The conventional first-line DMARD is methotrexate (MTX) and the triple therapy of MTX/hydroxycholoquine/sulfasalazine was also discussed.
For those of you who are not familiar with Prime Therapeutics, they manage pharmacy benefits for health plans, employers, and government programs including Medicare and Medicaid. Their opinions affect more than 20 million people. For many, this is the entity that determines whether or not their prescribed medication treatments are approved and whether there are pre-approvals or step-therapies involved.
I get it. Someone needs to keep an eye on keeping prescription costs in line. But focusing solely on the cost/benefit ratio excludes the patient’s best interests from the equation. Even the National Institute of Health (NIH) has stated, “The treatment of RA has been transformed in the last decade with the introduction of several targeted biologic agents. Although biologic agents are more costly in the short term than conventional disease-modifying antirheumatic drugs, drug-specific costs may be offset by significant improvements in RA symptoms, slowed disease progression, and improved physical function and quality of life for patients.”
I could spend pages taking Prime’s conclusions to task, but I will limit my comments to four major points:
- While the report tracked when patients were switched to a biologic, the reasons why the patients were switched were not included. By excluding this data, the report appears to imply that switching from conventional DMARD therapy was done without medical merit. This is not necessarily true. For example, there are patients who have concerning side effects from MTX including liver toxicity. There are other valid medical reasons for switching from MTX including other drug interactions and patient compliance issues.
- Physicians are the best judge of which drugs will be the most effective for their patients. They see the living results of treatment plans every day in their practice and they have front-line knowledge of which medications are the best choices for their patients based on a number of variable factors. As an example, not all patients are diagnosed in the early/mild stages of the disease. In fact, many are misdiagnosed for an extended time and, by the time the rheumatologist sees them, may have developed an aggressive/severe disease state. It should be the physician’s call as to whether conventional DMARD therapy is the best choice or whether more powerful biologics are needed. A simile to Prime Therapeutics report would be if your house was on fire and when you called 9-1-1 they said you must try a fire extinguisher first because it cost the city a lot of money to send out a fire brigade.
- Patients are financially involved in these decisions. Yes, RA drugs are some of the most expensive drugs there are, but companies such as Prime seem to forget that patients share in paying for these drugs. Either the drugs aren’t covered at all, have only a percentage of the cost covered or the patient’s coverage has high deductibles and/or copay amounts. Patients have as much or more motivation to control health care costs as companies such as Prime. I recently met an RA patient who had to make the choice of paying for her RA treatment or pay for college to finish her degree. These kinds of personal sacrifices are not unusual and underscore the importance that patients put on finding an effective treatment.
- Some of the information in the Prime Therapeutics’ news release is suspect. For example, there is a quote in the Prime Therapeutics’ news release that starts, “RA guidelines supporting use of conventional DMARDs before biologics have been in place for more than two decades …” This is an interesting statement given that the first biologic, Enbrel, wasn’t introduced until 1998, less than two decades ago. In addition, both the NIH and the ACR both reference the ACR’s 2008 recommendations for the use of nonbiologic and biologic DMARDs in RA (published less than one decade ago). These recommendations clearly state that the ACR, “… has not previously developed recommendations for recommendations for biologic agents.” The ACR updated these recommendations in 2012, which was five years ago (not two decades). The latest ACR guidelines are from 2015 and cover the overall treatment of RA, including the use of biologic and nonbiologic DMARDs. I’m not sure where the Prime Therapeutics got their two decades of recommendations. True, they may be referencing some other, less-prominent guidelines but in the US the ACR is the defining authority. And if they did actually get this statement incorrect, it makes you wonder what else is incorrect in their information.
I actually read the ACR’s 2015 Guideline for the Treatment of RA and, as much as I searched, I couldn’t find any reference to how long a patient should be on “conventional DMARD” treatment before being transitioned to a biologic. In fact, contrary to Prime Therapeutics assertion that switching between conventional DMARDs and biologics is contrary to the ACR guidelines, the ACR recommendations clearly state the following:
This RA guideline should serve as a tool for clinicians and patients (our two target audiences) for pharmacologic treatment decisions in commonly encountered clinical situations. These recommendations are not prescriptive, and the treatment decisions should be made by physicians and patients through a shared decision-making process taking into account patients’ values, preferences, and comorbidities. These recommendations should not be used to limit or deny access to therapies.
I am in favor of controlling prescription costs. I also strongly believe that controlling costs should not interfere with practicing medicine or with prescribing appropriate treatment plans for a patient. Unfortunately, the influence that Prime Therapeutics wields has the ability to do just that.
Thanks for checking in.
Even though I publish things on the Internet, it’s a bit weird to find out that people actually read them. Whenever I meet someone in person who reads my blog I immediately get self-conscious trying to remember what frustrations I’ve vented and whining I’ve done, suspecting this person probably thinks I’m probably a few sandwiches short of a picnic.
I just came back from an amazing trip where I ran across two people who read my blog. One was in the same meeting I was in and the other, who I will call “Barb”, turns out to be a friend of a friend (sort of).
At several points during the meetings I attended I was reminded of the importance of the RA community. While there is a lot of officially sanctioned/sanitized information about the disease available, community is where we learn about the true patient experience. Community, whether person-to-person or online, is where we connect with one another, get advice, give comfort and share what it’s really like to deal with this disease. Without community, we’re alone. With community, we have an army at our back.
And it’s my readers who continue to encourage and inspire me to keep writing after more than nine years. So to Barb, and the rest of you who have walked my journey with me, thank you.
I love it when I find a new, reliable resource in the fight against RA and other inflammatory diseases. I should have already known about the International Foundation for Autoimmune & Autoinflammatory Arthritis (IFAA) because I’ve met some of their members with whom I’ve been quite impressed.
I ran across the IFAA in conjunction with an RA study group which published a couple of items from the IFAA.
- The first is a document with tips on verifying information and help stop it from spreading. It’s called, “I heard unicorns cause RA” and can be found here: http://nebula.wsimg.com/64719d5d4b57fd0fe13b48e2666e5560?AccessKeyId=9BD8916C246CAC51B04E&disposition=0&alloworigin=1
- The second is a program that allows us to report false information or misunderstandings in publications. This is a program run by volunteers that follow up on the materials to help get them corrected or retracted. It can be found here: http://www.ifautoimmunearthritis.org/media-awareness-hotline.html
Here’s hoping that you have the resources you need in your personal battle against this disease. Thanks for checking in.
There seems to be quite a discussion in our community about the misunderstanding that the term rheumatoid “arthritis” causes and a case to be made for calling it “rheumatoid disease.” I don’t necessarily disagree, but I do see some major problems with it. I discuss a major one here: https://rheumatoidarthritis.net/living/the-roadblock-in-naming-it-rheumatoid-disease/