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.

Living With an Invisible Illness

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As part of the results from the Rheumatoid Arthritis in America 2016 Survey, our friends at RheumatoidArthritis.net have compiled some (IMHO) thought-provoking statistics into the following infographic. Additional information is included in the news release issued today (in which I along with fellow contributor, Mariah Z. are quoted): https://www.eurekalert.org/pub_releases/2016-12/hu-isi121316.php

Thanks to the great folks at RheumatoidArthritis.net and everyone a Health Union for the great work they do for those of us with chronic diseases.

ra_2016_infographic_12-8-16

Thank you, Healthline!


It’s a bit strange, I guess, but I’m always truly surprised when I find out someone2016_badge_list_v2_badge-rheumatoidarthritis reads or follows this blog. You can imagine my amazement, then, when the blog actually gets recognized. Healthline (www.healthline.com) has once again named Carla’s Corner, along with some of my most favorite other blogs, as one of the Best Rheumatoid Arthritis Blogs of 2016. I am indeed honored. Check out the entire list here:

http://www.healthline.com/health/rheumatoid-arthritis/best-rheumatoid-arthritis-blogs

Obesity and RA — Wait! There’s More!

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We’ve all heard the warnings about obesity and RA. However, a new study suggests that fat cells may actually trigger an earlier onset of RA and can lengthen the time it takes for treatments to work. But if you have RA, it’s not just as easy as “diet and exercise” body-weight-scaleto lose those unwanted pounds.

Read the full post here: https://rheumatoidarthritis.net/living/obesity-wait-theres-more/

Injected and Infused Biologics: Observations of a Needlephobe

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I’ll admit to being terrified of needles growing up. I’d pass out getting blood drawn or (once) even getting an injection. Fast forward to today and being an RA patient. Not only do I get blood drawn once a month for lab work, I give myself a weekly injection and get regular infusions of a biologic medication.

The decision to use a biologic medication is significant and should be discussed with your doctor before you begin treatment, when you start the treatment and as you move forward. The decision of which treatment that’s right for you is also an important discussion. One of the things to consider is the delivery method. That is to say, are you more comfortable with an injection that you give yourself at home or an infusion administered at a medical facility? Doing your homework before having that discussion with your doctor will help you be prepared and better understand your options. There are some excellent online resources including an entire section dedicated to biologic treatments on JointDecisions.com.

Over the years, my journey with RA has included being on nearly all the biologic treatments, so I’ve had a lot of experience with both injections and infusions. The hardest part for me was getting over the fear of the injection or infusion and the actual experience has not been that bad (even for someone like me who has always disliked needles).

That being said, there are some things to consider for both injections and infusions, including the following:

Injections

Biologic injections that you (or a caregiver/loved one) do at home are a convenient alternative because you can determine an injection schedule that works for you. I used to do my injections in the evening. I seldom had any side effects from the medication but if, for example, I developed a mild headache, then I’d generally be in bed asleep for the night and it would be gone when I woke up.

Injectable biologics need to be stored and disposed of correctly. The medications need to be refrigerated which isn’t a problem when you’re at home, but is a consideration if you travel a lot and have to keep the medication cold while away. You should also dispose of the used syringes in a responsible manner. Regulations vary by location but I use a mail-order service that, for a small fee, disposes of my full containers and sends me a new one.

In my opinion, the two biggest considerations are the dosing schedules and syringe type.

The dosage schedules for injectable biologics vary. While the decision on which treatment is the right one for you should be the one with the best chance of success, if the injection schedule is going to be difficult for you, it is something you should discuss with your doctor as part of the overall treatment choice.

Injectable biologics generally come in a prefilled syringe or a prefilled automatic pen injector, and some medications are offered in both forms. Although some medications still come in a vial and syringe combination, the prefilled option is great because they can help eliminate any dosage errors.

The prefilled syringes I have used have all been slightly different, but they all generally resemble the syringes your doctor uses to give you injections. They have a needle on one end and a plunger on the other end with the medication in between. You insert the needle end into the injection site (usually the top of your thigh or your abdomen) and push with the plunger to inject the medication. The really nice thing about the syringes is that you can manage the injection speed to as slow or as fast as you need to be comfortable.

Automatic pen type injectors are, in my opinion, super easy to use. They generally look like a tube with a push button on one end. You press the end of the tube against your skin, push the button and about 10 to 15 seconds later, you’re done until next time. This type of syringe automatically injects the medication for you, eliminating the need to actually inject yourself with a needle, which can be difficult for some people.

Infusions

I had been on injectable medications for a while when my rheumatologist first changed me to an infusion treatment better suited for me.

I get my infusions at a designated room at my doctor’s office, but I’ve also had one at the hospital and I know people that go to special infusion centers that are set up for these kinds of procedures. The medication is delivered via an IV into your bloodstream. Depending on the medication, the infusion can be as quick as half an hour or may take several hours. However, the time between infusions is usually longer than it is than for injections.

The first time you have an IV (or for me, even the 10th or 12th time) can be scary. This is normal and any anxiety you have should fade over time. I personally have a great infusion nurse who makes it her goal to make me as comfortable as possible and the other infusion nurses I’ve met are very capable and very compassionate.

I occasionally get asked if I have a preference of injections or infusions. Both have their strong points. My personal preference would be NOT to have RA at all and to never have to consider one over the other. But since I do, I’m glad that there are advanced medications out there and that there are good options available to the doctor and to the patient.

I am especially glad there is such a strong community of RA patients and support organizations, such as Joint Decisions (http://www.jointdecisions.com). I feel that the more knowledge someone has, the more empowered they become to manage their condition and have a meaningful dialogue with their doctors. Groups such as Joint Decisions help provide the education and information that help make us better informed people and therefore better advocates for our own healthcare.

This post is sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. I was compensated by Janssen for my time spent collaborating on content for Joint Decisions.

The Twelve Days of RA


As we enter the season of holiday craziness, I have reprised my Twelve Days of RA.holiday 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.

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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