More insurance adventures


A previous couple of articles (here and here) covered the insurance trap in which I find myself — having to work just to pay my health insurance premium. I’ve had some very interesting insurance adventures since then.

That article was written at the end of the year during which I had met my deductible. As such neither the infused biologic I had been on (at more than $16K per infusion) nor the new injectable biologic to which I had just switched (about $3500/month) cost me a single penny.

Then the New Year came.

Read the rest of the post here: http://rheumatoidarthritis.net/living/adventures-insurance/

More Kineret and Insurance Adventures

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So I’m in the middle of my third week of Kineret. I think it’s still a bit too early to tell if it’s working. It’s a bit weird. I think I generally feel better all over, but my joints are still sore and tender. I’m hopeful this means the drug is working and that it will eventually provide relief for the joints as well as the general inflammation.

The first week I didn’t have any injection site reactions, but toward the end of last week I started having a silver-dollar-sized rash around the injection site. It didn’t hurt or itch, but it also didn’t go away for several days. At first I thought it was kind of handy because I could see where I had injected and, judging by the how red the reaction was, how recently. But then I began to run out of room on my thighs (didn’t want to injection into an area that was already having a reaction). I’ve since switched to my abdomen and am hopeful that my thighs heal up before I run out of room on the new area. At least it doesn’t hurt or itch, which is a blessing. I had site reactions with other biologics but they usually calmed down after a few weeks, which is what I hope will happen here.

So, of course, it’s time to refill my Kineret prescription. My local specialty pharmacy, which I’ve been using since going on biologics, called and told me that I’d have a $1700 copay. This was a shock to my system since it didn’t cost me a dime in December. I had two or three conversations with them over the course of a couple of days with the reason initially being that it was a new year and therefore the deductibles start over. That didn’t make sense because the drug should be covered under the prescription part of my insurance, not the medical.

After further conversations, turns out that my local specialty pharmacy (which I love and it’s local so I can just go pick up my prescriptions — which is important for refrigerated drugs) is no longer in network with my insurance company. If I want to pay $150 instead of $1700, I had to switch to my insurance company’s specialty mail pharmacy and have the drugs shipped to me. (Don’t you just love it when insurance companies run your life?)

I hate giving up my local resource, but even if I could afford $1700 (which I can’t), it doesn’t make sense to spend that kind of money when I can get it for less than a tenth of that amount. I really wasn’t happy.

But I’ve been amazed. I talked to the new pharmacy people and they arranged to get my prescription transferred over that day. I got a phone call confirming it and they set up a delivery date. They ship overnight. I was out yesterday so I arranged to have it delivered today. I got an automated phone call telling me that it had been shipped with an order number and instructions that if I didn’t receive it as scheduled to call them. The people on the phone throughout the entire process were very courteous, knowledgeable, and respectful, answering all of my questions. They were so nice that I had a really hard time being grumpy.

So here we are in the new year with a new drug, a new pharmacy and new insurance rules. Hope your new year is starting well.

Thanks for checking in.

Updates

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It’s been crazy since the New Year hit with lots of work deadlines, stress, and now upcoming travel. I hope your year is starting out calmer. I wanted to take a minute to provide you with some quick updates, as follows.

  • Kineret. I started my new biologic, Kineret the Sunday after Christmas, so I’ve been on the drug about 10 days now — much too early to say whether it’s working or not. I think I generally am feeling a bit better, not so stiff and sore all over in the morning. However, I have developed some consistently tender spots in my joints. I am hopeful this is just the result of being off a medication that actually works for so long before starting Kineret. My major concern with the drug was the reports of injection site reactions. I experienced no reactions at all the first week, but the last couple of days I’ve developed a mild redness/rash around the site immediately after injection. The only other complaint (if anything so minor can be considered a complaint) is that the injection really, really stings. The needle is very tiny so that doesn’t hurt at all, but the solution has citric acid in it as a preservative. Think about getting lemon juice in a paper cut. The stinging fades very quickly but it sure gets my attention when I’m doing the injection.
  • Creaky Joints Web Chats. If you’re not familiar with Creaky Joints’ Joint Decisions web chats, you should check them out. The next one is Wednesday, January 14 at 7:00 pm ET / 6 pm CT. It’s entitled “Right Track RA: Helpful Tips for Continued Success in the New Year.” The Joint Decision and registration links are:

Joint Decisions Webpage: http://bit.ly/1vJ79kq
Registration Link: http://bit.ly/1uMMSi4  (you need to register)

     You can watch the previous chats here:
     Chat 1: http://bit.ly/1xSbcPA 
Chat 2:
http://bit.ly/1AHLBZS 
Chat 3:
http://bit.ly/1Al4NhR

  • Petition to add RA to the Social Security Administration’s Compassionate Allowance List. RA SuperGirl has created this petition. The Compassionate Allowance List is an official list of conditions that allows the Social Security to act quickly when someone with one (or more) of the conditions applies for disability. Whether you agree with the premise or not, you have to applaud her activism. Link to RA SuperGirl’s blog post here. Link to the petition here.

That’s all the news for now. I appreciate you checking in.

My 2015 RAsolutions

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First, let me just say how much I enjoyed J. G. Chayko’s recent post on Outshining Broken Resolutions. She wisely points out that amidst the rubble of grand resolutions that somehow never quite get met there are numerous, wonderful successes throughout the year for which we should be proud.

Being an older, wiser person than I was when I made those sweeping resolutions, I only made one resolution for 2014. After having two major surgeries in 2013 (L2-L3 disk removal and spinal fusion and total left knee replacement), I resolved to stay out of the hospital in 2014. And unless something drastic happens today, I will be able to check that box.

I have no major resolutions for 2015. I told a friend that at some point in your life, keeping the status quo isn’t such a bad thing. Just not getting worse can be an accomplishment.

But my goal (if not my resolution) for 2015 is to be “better”.

I know this goes against all precepts for making your goals achievable. You’re supposed to be set specifics that you can track and monitor progress against, e.g., I’m going to do [X] for [Y number] of days a week. It seems like I always set myself up for failure when I do this.

I wasn’t bad in 2014. But I know I could eat better, exercise more, be more patient. Without setting a hard-line goal, I am going to endeavor to be more cognizant of my behavior. I want to make those good food choices off a menu rather than ordering the first thing that sounds yummy because I’m hungry. If it’s been more than a couple of days since I’ve gotten off my fanny, I’m going to get up and do something, even if it’s just a walk around the block. And while I generally try to be respectful and kind to those around me, I realize that sometimes the pain of RA and the effect of medications (like prednisone) can make me shorter to people than I intend. I want to remind myself of this fact and be aware of my words before they leave my mouth and potentially harm someone unintentionally.

There are other examples, but “better” seems to be the operative word for me in 2015, and I try to always keep my word.

I hope that your holiday season (however you do or don’t celebrate) has been joyous. Wishing that 2015 is better for all of us.

Thanks for checking in.

The story …


I met my husband in the Houston Hobby airport in December 1993. We had both been in Houston on business and on the same flight back to Dallas, which was delayed. We got to chatting as people in airports do, exchanged business cards, and said we should get together for drinks sometime in the new year. He was married, I was married, and even though both marriages were in trouble, nothing came of the “get together for drinks” (or anything else).

Fast forward a year later to December 1994. By then my marriage had disintegrated and I was living on my own. I was addressing Christmas cards and ran across his business card. I sent him a card that wished him well and reminded him that he’d promised me a drink in 1994 and while I was a patient person, the year was about over. As it turned out, he was also on his own and he promptly reached out to make a date for that drink.

We tried several times, but it was a crazy time for me with project deadlines and all-night press checks so I kept having to reschedule. Finally I told him that we’d just have to make it sometime in January.

Then on New Year’s Eve afternoon he called and said he was determined to keep his promise and asked that I meet him at a local dive for oysters and beer. I had nothing else going on and I was secretly pleased by his perseverance. So we had our official first date on New Year’s Eve afternoon in 1994 — more than a year after we had met.

1995 was pretty tumultuous. We dated. I got mad and threw him out of my life (three times). I took a job based in Omaha but which had me traveling every week anywhere from Florida to California. He was starting his own architectural practice. It was nuts. We finally both formally ended our marriages that year. We wound up on the same divorce court docket on the same day and carpooled together to the courthouse to get divorced together. (When we later got married the clerk thought we’d previously been married to each other because our divorce dates were the same.)

Finally in 1996 I said yes. For various reasons we picked a weekend in April and a trip to Las Vegas for the wedding. We had no money so we flew to Las Vegas on Southwest Airlines. This was during the time when Southwest used plastic, numbered boarding passes. We had numbers 19 and 20. We were going to be in Las Vegas the 19th and 20th of April and couldn’t decide which day we wanted to get married. My (soon-to-be) husband put the boarding passes behind his back, I picked the hand that had #19 in it, so we were married on the 19th of April.

As much as we still love each other, we stay together for the good of the world. It seems that our marriage is connected to some very critical dates in recent history. Our mutual divorces were final on 9/11 (1995). April 19th, our anniversary, is also associated with the Bay of Pigs, the Oklahoma City bombing and the Branch Davidian compound event. We figure if we ever get divorced, the world might actually end.

But regardless, every year since our first official date, we’ve gone back to the same dive and had oysters and beer on New Year’s Eve day. Counting our first date, this year makes 21 years in a row. It marks 19 years of marriage and the start of another year of adventure. It’s great being married to your best friend and partner in crime. He’s been through a lot with my RA and I give thanks every day that he’s there.

So that’s the story and how I’m spending my New Year’s. Tomorrow’s another year, another dozen oysters and some cold Miller Lite.

Hope that 2015 treats us all with kindness and health. Thanks for checking in.

The Insurance Trap

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December brings a lot of milestones including the Christmas and Hanukah holidays, the Winter Solstice, and New Year’s Eve with its endless “Best Of” lists and unrealistic resolutions for the coming year. Equally ubiquitous are deadlines for making commitments for the coming year’s health insurance. Whether you’re covered by your company’s insurance (I’m not), purchasing health insurance on your own (that’s me), or by Medicare, you have to make important decisions that will impact both your health and your pocketbook for the next 12 months.

Read the rest of the post here: http://rheumatoidarthritis.net/living/insurance-trap/.

The 12th Day of RA (Reprise)

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As it’s now only a few days until Christmas, I thought I’d reprise last year’s post (to be sung, hummed, or laughed at to the tune of “Twelve Days of Christmas”).

On the twelfth day of Christmas, RA brought to me:

12 joints a-flaring,

11 scripts a-filling,

10 toes a-throbbing,

9 labs a-drawing,

8 workdays missing,

7 doctors billing,

6 X-rays to be taken,

5 new pills,

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

Kineret, anyone?

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So while I’m waiting for the insurance paperwork to trickle through the system I’m doing additional research on my new drug of choice, Kineret. Of course I’ve read all the “official” stuff on the Kineret website, the NIH website, Web MD, Drugs.com, the Mayo Clinic, etc. which basically all regurgitate the same information.

What I’m having trouble finding are actual patient experiences (blogs) with Kineret, especially for RA. I’ve found a few reviews and incidental information, particularly for its use with Still Disease and other conditions, but not much that I can find from those living with RA.

So please consider this a call for information/input. If you currently use or have used Kineret for your RA, I would appreciate a comment/response to this post. If you don’t want to post publicly, you can email me at carlak@tx.rr.com.

I appreciate everyone’s help.

Where I am, how I got here and what’s next

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I was diagnosed with RA in July 2008. It’s been a pretty rocky six and a half years since then. In all, I’ve had nine surgeries since my diagnosis including three joint replacements, a revision to the shoulder replacement, two rotator cuff surgeries, two knee arthroscopies, and a disc removal and spinal fusion. My home furnishings have expanded to include grab bars in the bathroom, my own rolling hospital tray table, and a continuous cold therapy system.

My New Year’s resolution this year was to stay out of the operating room and, unless you count my SI joint injection which included anesthesia, I’ve made it so far.

Needless to say, my RA has not always been well controlled during this journey. I’ve systematically worked my way through most of the biologics on the market as follows:

Drug Type Start Stop
Methotrexate 35 mg DMARD 7/12/2008 9/15/2008
Humira TNF Blocker 1/15/2009 8/12/2009
Simponi TNF Blocker 8/12/2009 12/9/2009
Enbrel TNF Blocker 12/9/2009 4/18/2011
Enbrel + 10 mg leflunomide TNF Blocker/DMARD 4/18/2011 2/1/2012
Orencia + 10 mg leflunomide T-Cell/DMARD 2/1/2012 10/16/2013
Cimzia + 20 mg leflunomide TNF Blocker/DMARD 10/16/2013 3/19/2014
Xeljanz + 20 mg leflunomide JAK Inhibitor/DMARD 3/19/2014 8/28/2014
Remicade + 20 mg leflunomide TNF Blocker/DMARD 8/28/2014 Present

I’ve only been on my most recent medication, Remicade, since August. You start with three loading doses/infusions. After my second loading dose wasn’t producing the desired results, my rheumatologist increased the dosage. Then after my first “regular” infusion, she increased it again. She said she wasn’t going to increase it a third time.

So after more than three months of feeling like I was pouring the $16,000 per infusion down the drain, I saw my rheumatologist this week. We agreed that we needed yet another change. There are only three current biologics that I haven’t been on: Actemra, Kineret, and Rituxan. She suggested Kineret. Who am I to argue? It’s one of the original biologics so its effectiveness and safety record is well established. And it’s not a TNF-blocker which five of my “failed” medications were.

I have hope.

The bad news (at least to me)? It’s a daily injection. (Yuk.) I’m not looking forward to that. In addition, there is a high incidence of injection-site reaction (ISR) and, given the daily injection, there’s not a lot of time for recovery before the next injection is due, although evidence suggests that these become less severe and/or disappear after about four weeks (that’s 28 injections).

Kineret also contains citric acid which means that the injection stings. Every day. I don’t think you ever adapt to that. And since it has to be refrigerated (and it’s a daily injection), I have to figure out how to travel with it. I used to be able to figure out my travel and medication schedule to avoid the situation, but with a daily injection, there’s not much choice. The bit of silver lining in this cloud is that it comes in a latex-free, prefilled syringe with a tiny needle. The needle is a 27 gauge for those of you who appreciate those things (and I do).

I know a lot of people need to take injections every day (insulin-dependent diabetics come to mind). Instead of being such a whiny baby, I should be grateful that I have choices in medicines and a rheumatologist that is willing to recognize when a treatment plan isn’t working and to suggest alternatives.

I am. Both. (A whiny baby and grateful.)

We still have to go through the insurance approval dance and all the paperwork. Once I get started on it, I’ll certainly update the blog with my experience.

So that’s where I am at the moment, how I came to be here, and what’s next on the agenda.

Hope that wherever you’re going, however you’re getting there, and whatever comes next in your life brings you many blessings.

Thanks for checking in.

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