We have to do better

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One of the blogs I follow is healthskills.wordpress.com. It’s written by a woman in New Zealand who originally trained as an occupational therapist but who has since achieved her masters in psychology followed by her Ph.D. The blog’s audience is health care providers but I find the posts approachable as well as being quite thoughtful and insightful, especially when they enter into areas of why things are done or why they happen and the effects not only on the patient but the therapist.

A recent article discusses the question, “What is Pain For?”. It turns out the answer isn’t quite as straightforward as you might think and has a lot to do with both being aware of and defining one’s self. I was especially struck by a quote in the post, as follows:

Our sense of self also disappears when we experience pain we can’t escape and we can’t make sense of. Throughout the time while people are trying to label their pain, establish the meaning of their symptoms, and while people are searching for a solution to their pain, people’s experience of both time and “who I am” is threatened (Hellstrom, 2001).

My husband always knows when I’m not feeling well — not because I tell him — but because I get quiet. I stop interacting. I lose interest in doing things I usually enjoy. I stop being the person he knows me usually to be.

I know this is true of a lot of people. When they hurt, they get quiet or grouchy. They don’t want people around. All they can really focus on is trying to be as comfortable as they can and perhaps find a way around or through what’s causing the pain.

Which now brings me to my rant. (You’ve been warned …)

When we deny deserving people appropriate pain relief, we are denying them their right to be themselves. We have denied them their ability to express themselves as their true individual selves. All we have left them with is their ability to respond to their pain.

I don’t use opioid pain relievers on any kind of regular basis (primarily for post-surgical pain), but I am touched by the lives of many people who do. They use them responsibly, and often as a last resort, to manage the chronic and debilitating pain that comes with long-term illness. These drugs are essential to their ability to function as humans and, as it turns out, the ability to define who they are as people.

I understand, but at times can’t fathom, the current opioid crisis that we’re in. However, the current climate of overreaction to the point of denying people the ability to control their pain is not the answer.

We have to do better.

**Note that these views are my own and do not reflect any views expressed by the author of HealthSkills.wordpress.com.

Lilly/Incite’s New JAK Inhibitor, Barincitinib, Shows Promise

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This week I got two exciting bits of news about barincitinib — a new JAK inhibitor developed by ELI Lilly and Company (NYSE:LLY) and Incyte Corporation (NASDAQ:INCY). This is a new medication for the treatment of moderate-to-severe rheumatoid arthritis.

The first was that the drug, with the brand name Olumiant, has been approved to treat RA in the European Union — either by itself or in conjunction with methotrexate. This is a major accomplishment in that it’s the first JAK inhibitor approved in the EU. (Full news release here.)

The second is that the drug, which is in late-stage regulatory review in the US and Japan, has shown significant patient improvement of both ACR50 and ACR70 scores starting at week 12 through week 52 as compared to the baseline treatment of adalimumab (Humira). The latest data was published in the New England Journal of Medicine and the news release can be found here.

There are several reasons why I’m excited about this news, probably the most important is that it demonstrates an impressive investment into the research and development of new treatments for RA. As I, personally, am about to run out of treatment options, this gives me hope for the future. And the drug is a once-daily oral medication — not an injection or an infusion, which will make it more approachable for many RA patients.

The first JAK inhibitor marketed in the US, Pfizer’s Xeljanz, was approved in 2012 and subsequently expanded to include Xeljanz XR. The emergence of the second drug in this class broadens the field of treatment options for RA patients and is good news for all of us with inflammatory diseases.

I hope whatever treatment plan you’re on is working well. Thanks for checking in.

Fall down, go boom (don’t repeat)

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I guess the really good news is that although it’s close to four schools ranging from elementary to high school, the area where I was walking has light traffic so I don’t have to worry about hysterically funny videos of me proliferating the Internet. In fact it was several minutes before anyone noticed me lying face down on the sidewalk. Eventually a landscape worker a few houses away saw me. By that time, I had righted myself enough to where I could sit on the curb and waved to let him know I was okay.

It happened at the 1.5 mile marker of my two-mile walk. I had posted earlier that I have been walking on a regular basis and gradually increasing how many steps I have been getting during the day. This week I hit the two-mile mark for the first time and was going for a repeat performance.

It was one of those stupid things that just happen. My foot caught an uneven piece of sidewalk and before I could catch myself, I pitched headlong onto the concrete. I took the brunt of the fall on my right side, landing hard on my hand, shoulder, hip and knee, twisting my ankle in the process and knocking off my sunglasses.

Probably what saved me from further damage was the cooler weather. After several days of spring temperatures, the weather had turned cool enough that I put on a jacket and gloves. When I hit the sidewalk, it scraped off a two-inch round patch of leather off the palm of my glove. This would have been skin without the glove. My jacket avoided much damage but I believe added some padding that helped cushion my fall.

My husband’s office is only a couple of miles away and, since I knew I couldn’t make it the rest of the way home under my own power, I called him and he was gracious enough to come rescue me. (I’m still proud I got 1.5 miles in!)

Today the red welts on my hand, elbow, hip and knee have bloomed into a bouquet of multi-colored bruises. Interestingly the worst is a deep purple bruise on the outside edge of my thumb. Beyond that, the other parts that I hurt — the wrenched shoulder, the tweaked back, the twisted ankle — are all screaming. No walks for me today.

Any kind of impact injury scares me. With three replaced joints and two levels of my spine held together by titanium rods and screws, I’m afraid that a fall, car wreck or something similar will pop something loose or even off.

Beyond that, like many RA patients, I’m probably at a higher risk for bone fracture than most. Steroids, such as prednisone or steroid shots, affect bone density and increase chances for osteoporosis. This is also true for proton-pump inhibitors (such as Prilosec, Prevacid, and Protonix) that are often taken along with prednisone and/or NSAIDs to help curtail stomach issues. While I get regular bone density screens (as should you), it’s a risk factor that we should all consider.

I’m fortunate that not much was damaged but my pride and I have now have an authentic reason to buy a good pair of end-of-season gloves on sale. That is once I can move well enough to make it to the mall.

I hope nothing bad goes boom in your life today (including you!). Thanks for checking in.

 

 

(Finally) Embracing Goals and How They’ve Helped Me

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After years of dealing with punishing deadlines, I’ve finally found the rewards in setting and working toward goals instead. Just setting them a bit higher than what I normally achieve has paid big dividends in how I feel.

Read the entire article here: https://rheumatoidarthritis.net/living/finally-embracing-goals/

Some Days Are Better Than Others

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If some days are better than others, that means that some days are also worse than others. It seems like I’ve had a lot of those in my life lately.

I think it’s easier to tell that a new treatment isn’t working that being able to discern when an existing treatment quits working. For me, it’s a gradual process. Eventually I start to wonder if my RA is getting worse. Then I realize that I’m not getting the “feel better” feeling that often comes from the latest injection/infusion. Finally I get to the point where I don’t feel like I’m on anything at all.

All this takes weeks, if not months, which is a long period of time to feel crappy. New biologic treatments can take up to three months to become effective, so by the time you finally switch, you still have another 90 days of not feeling as good as you might.

Early last November my rheumatologist and I agreed to the switch to Simponi Aria. It wasn’t until several weeks later in December (due to some screw ups in getting the insurance approvals) that I got my first loading infusion which was supposed to be followed in four weeks by a second loading dose. Due to the New Year’s holidays and further screw-ups/confusion, I was a week late getting the second loading dose.

Side street in Barcelona

Side street in Barcelona

But thank goodness for prednisone. My husband took a Thanksgiving trip to Barcelona and Madrid, Spain and even though I had some tough days, I managed the 10-day trip fairly well. We’ve come to expect there will be days when I lay around the hotel and my husband gets “let off the leash” to go exploring on his own with his camera.

 

The good news is, I think I’m feeling better. I don’t know if it’s the Simponi Aria kicking in or whether it’s because I’m actually keeping my New Year’s resolution to get some exercise most days (right now it’s walking 30 minutes at least 4X a week). While I still have days (and especially nights) that are challenging, I have noticed more days where it feels really good to get out and walk.

I used to tell people there were some days I didn’t feel like getting out of the house. Then there were the days I didn’t feel like getting out of bed. Fortunately, those days seem to be getting fewer and further between.

I hope your day is good and that you’re feeling well. Thanks for checking in.

13 Things

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I’m more of a continuous improvement kind of girl rather than new year’s resolutions, but I found this list of 13 Things You Should Give Up to be Successful fascinating. https://medium.com/personal-growth/13-things-you-need-to-give-up-if-you-want-to-be-successful-44b5b9b06a26#.oma6euf8b  I’ve often found that subtracting things (simplifying) often yields greater/better results than adding. Some of these I already embrace, some I need to do better on, and some I need to think about.

Enjoy!

Biosimilars are not Generics and Other Stuff You Should Know

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2016 was a momentous year for the biosimilar market as the first of these drugs were approved for use in the US. Of the four biosimilars introduced, it’s notable that three of them are RA medications.  Inflectra, a Remicade biosimilar, was approved in April; Erelzi, an Enbrel biosimilar was approved in August; and Amjevita, a Humira biosimilar, was approved in September. The fourth biosimilar, Zarxio, is prescribed for cancer patients.

It’s important to understand that these drugs are not identical copies of the original like a manufactured generic drug is. Most medications are chemical compounds that are created through a specific process. Aspirin is a great example and the aspirin compound created in a high school chemistry class is identical in structure to the aspirin you can buy off the shelf at your local store.

Biologic drugs, however, are animal-based proteins that are grown in a lab. This applies to both the original biologic as well as the “similar” drug. While similar, just as two fingerprints are similar, the biosimilar can never be an exact match to the original. To illustrate the complexity, if aspirin (which has about 20 molecules) is a one-room log cabin, then a biologic is the Empire State Building.

Read the full story here: https://rheumatoidarthritis.net/living/biosimilars-not-generics/

Hello New Year

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Somehow I’m always surprised when the New Year arrives. This is a bit strange as it shows up like clockwork on January 1. It’s not like it can sneak up on me.

I look back at 2016 and, if you can subtract RA out of the equation (wouldn’t that be nice?), it was a pretty good year. It was the first year since I was a teenager that I haven’t worked full time and I filled it with travel and books and learning new things. (More about that in this earlier post: here.)

But after so many years of a demanding career, it’s hard for me to feel like I actually accomplished anything. For a results-oriented, bottom-line, micro-managing kind of girl, that’s a strange and not altogether comfortable feeling.

I’m used to looking ahead at my calendar and seeing it filled with projects and deadlines and meetings (and paychecks!). 2017 looks like wide swaths of desert punctuated with the occasional oasis of a trip.

I have no doubt those calendar pages will get filled. For one thing, I have committed to increasing my advocacy. With all the changes coming to health care — from new treatments to new health legislation, it will be a very interesting 2017.

And while I’ve given up making New Year’s resolutions, I want to keep up the progress I made on improving my health in 2016. There are more pounds to shed; more miles to trek.

I know there will be challenges in the new year. My health insurance situation is going to change mid-year and that’s worrisome. I am almost out of options on biologics. I really expect this one to fail. I just started on Simponi Aria — the infused version of the injectable Simponi which I was on several years ago. While I loved the medication when I was on it before, it eventually quit working for me, so my hopes for the infused version aren’t great. I may be looking at a couple of surgeries — never fun, but if they make things better, it will be worth it.

Do I sound bleak? I’m really not. The unknown has always enthralled me and while my calendar pages may currently be blank, it’s just because I don’t know what’s going to fill them yet. And while that may temper my anticipation, it whets my imagination (which can be a dangerous and wonderful thing).

I do know that there will be many changes in 2017. I hope that those changes are good for all of us and that you and yours enjoy a year of both health and happiness.

Thanks for checking in.