Traveling? You should be aware that drug laws vary dramatically not only from country to country but between states. The consequences can be severe. Read more on my article for RheumatoidArthritis.net here: https://rheumatoidarthritis.net/living/beware-of-different-drug-laws/?utm_source=notifications.
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
I was encouraged when I read the linked (although somewhat morbid) news story below concerning how a hospital handled “Do Not Resuscitate” instruction tattooed on an unconscious patient’s chest. As the ethics consult pointed out, “the law is sometimes not nimble enough to support patient-centered care and respect for patients’ best interest.” Here’s wishing that all our medical teams would turn to patient-centered care as a guiding compass.
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.
Did you know that HOW your treatment is administered can affect you financially? That’s because some treatments are covered by the prescription/drug portion of your insurance coverage (or Medicare) and some are covered by the medical/major medical portion. That’s an important consideration in choosing both a treatment plan and (as we’re in the open enrollment period) health coverage.
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/
Last Friday, 10/20, Janssen Biotech announced that its RA drug, Simponi Aria, received FDA approval for treating adults with active psoriatic arthritis (PsA) or active ankylosing spondylitis (AS). First of all, I’m on Simponi Aria and I’m doing as well or better than I have since my diagnosis. If PsA and AS patients can get the kind of results I have, it will make a world of difference in their lives.
But beyond that — why does this announcement matter to RA patients?
I think there are a couple of things that make this important.
First of all — a common treatment underscores the connection between these inflammatory diseases. This means that research into what causes one of them very well could lead to discoveries for the others.
Second — this demonstrates the potential for other drugs to be used for multiple conditions. As medications are developed for one inflammatory condition, this kind of news supports seeking approval for treatment of other diseases. This makes drugs for patients (including RA patients) available much more quickly than researching, developing, and approving a completely new treatment.
So congratulations to Janssen on these approvals. And congratulations to the people with PsA and AS, and the rest of us with inflammatory conditions that proven drugs are now available to a broader range of patients.
I hope whatever approvals are pending in your life are also successful. Thanks for checking in.