Esophageal Stricture — or RA Bites Me Again

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So I’ve been doing pretty well. I had my Achilles tendon surgery last fall and, combined with my new Simponi Aria treatments that seem to actually be working, I’ve been feeling generally good. I am out walking (miles) most days and the fatigue is practically non-existent. While there have been a few down days and a few painful joints here and there over the past six months, overall I’ve actually felt really human. I have had the opportunity to travel and to meet up with other advocates on several occasions and am looking forward to some similar trips and some great vacation plans with husband. After worrying for months, I recently found out that Medicare is going to cover 100% of my infusions. Life has been good.

In addition to RA, I also have Sjogren’s. If you don’t know, one of the major symptoms is dryness — dry eyes, dry mouth, dry everything. I take medication for it which really helps. One of the things that has happened over the past year or so is that I have very occasionally gotten food stuck in my esophagus. I pretty well narrowed it down to breakfast (before I take my Sjogren’s medication so I’m dry) and when I eat something dry like toast and don’t drink enough liquid with my food. When I take my medication, or eat something moist like cereal and milk, or make sure I drink something with every bite of food, it doesn’t happen. To me, it’s been a case of, “Doctor, doctor it hurts when I do this — so don’t do it.”

A couple of weeks ago I had a really bad instance of this happening. Usually, if I take sips of water or simply wait long enough, the food jam will resolve itself. But this time, it felt like it was getting worse. I literally felt like I was having a heart attack. I eventually got sorted out but my husband insisted I go see our GI guy about it. He told me if it were him having the problem, I’d be telling him to go. (I hate it when he uses my words against me.)

So yesterday was my appointment. Love my gastroenterologist. Excellent doctor medically. Very thorough. Very practical. Very funny. Actually listens. All my favorite attributes in a doctor. He agreed that my Sjogren’s analysis could very well be the issue, but that there were a couple of other things that could be happening. He suggested (as I knew he would) that we do a barium swallow study followed by an endoscopy (where they stick a camera down your throat and look around) just to make sure. One of the primary things that could cause the issues I am having is an esophageal stricture. That’s where a band of tissue forms a ring in the esophagus and keeps it from expanding to let food pass. (Portentous music here …) Turns out that a disease related to this condition is RA … !!! (along with other inflammatory / autoimmune disorders).

We scheduled the endoscopy (which is done under anesthesia) for two weeks out, but the imaging center doing the barium study was right down stairs and it turns out, they could do it while I was there, so that’s what we did.

The neat thing about these studies (or at the least the few that I’ve had) is that you can actually watch what’s going on as you drink the barium solution. The radiologist watches the esophagus and stomach as you slowly drink the solution and he can see how everything is working and if there are any obstructions and things of that nature.

At the last part of the study, the radiologist gave me a barium pill to swallow. It’s small, less that 1/2 inch — about the size of a regular Tums tablet. So we all watched on the monitor as the little white pill meandered down my esophagus and stopped just short of my stomach. And it just sat there. So the radiologist had me drink the rest of the water, and we watched as the water went down, slithered past the tablet, and the tablet just sat there. So the radiologist then had me drink the rest of the (very thick, nasty) barium solution to see if the thicker liquid would push the pill down. Same thing happened. The solution wandered down, slid past the pill, and the pill just sat there.

The pill was much smaller than a normal bite of food and actually much smaller than several of the medications I take. I’m amazed that I hadn’t had issues every day. And the radiologist agreed.

He confirmed that it was a ring stricture right above my stomach. It also appears that my esophagus isn’t working correctly. Instead of smoothly pushing food down into my stomach, it gets out of sequence. That’s called esophageal motility disorder. Not sure how that’s addressed.

But I have to admit, I am really pretty bummed. I have been feeling so well and to find out I have something really wrong with me (not just some transient pain), is just plain demoralizing. And now I’m paranoid about eating anything denser than water. And I’m going on vacation out of the country (on a cruise ship) next week, and what happens if I have issues there? The situation can get bad enough that it becomes an emergency surgical event. (Sigh.)

The good news is that the stricture is a pretty easy fix. During the endoscopy in a couple of weeks, my doctor will stretch out/dilate the stricture by expanding a series of increasingly larger balloons until the ring is released. There is always a possibility that it can come back but I’ll deal with it then if it happens.

And while this is yet another example of how RA affects your entire body, not just your joints, the really better news is now I know there is a real problem (which could be really serious) and I now have a real solution.

I hope that if any problems appear in your life today, that they also have simple solutions. Thanks for checking in.

Welcome Kevzara®, the Latest RA Biologic!

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Late Monday, May 22, the FDA gave approval to Regeneron Pharmaceuticals, Inc. (NASDAQ: REGN) and Sanofi’s new biologic RA treatment, sarilumab, under the U.S. brand name Kevzara. It is the latest addition to the Interleukin Inhibitor (IL-Inhibitor) class of drugs that also includes Kineret and Actemra. The medication comes in an auto-injector and is administered every two weeks. The primary focus for this drug are patients that have “failed” on at least one other biologic. It can be used with or without methotrexate. The news release from the company can be read here: http://investor.regeneron.com/releaseDetail.cfm?releaseid=1027419

I am personally thrilled that there is a new option for RA patients, especially those like me who have been on numerous treatment plans that eventually quit working. Like other products, such as computer processors, each new product holds promise of improvement over the ones that came before it.

Actual availability for patients is, of course, dependent upon getting supplies out, educating physicians as well as patients. and navigating the quagmire of insurance and Medicare/Medicaid approvals. This last item is very important because, although I haven’t seen any “official” pricing, news stories peg the price at $39K/year. While expensive, this is actually less costly than some of the established biologics on the market.

So thank you, Regeneron and Sanofi, for the new drug. And thank you for checking in.

#ArthritisFoundation Holds Walk for My Birthday

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This isn’t exactly fake news. There are actually two true things about that headline.

The first is that my birthday happens to be Saturday. The second is that the Dallas Chapter of the Arthritis Foundation is holding their Walk to Cure Arthritis on the same day. Here’s the link. http://www.kintera.org/faf/home/default.asp?ievent=1166058&_ga=2.77723220.1915340304.1494277390-42033948.1448375354

They’re a bit short of their money-raising goal, so if you haven’t gotten my birthday present yet, you can still walk or donate or both!

(Okay, so they’re not exactly having the walk to celebrate my birthday. But if you’re one of those people who believe there are no coincidences — well, there you go.)

Hope whatever you do on Saturday brings you both health and happiness. Thanks for checking in.

 

Sticks and Stones Aren’t the Only Things That Hurt

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The physical pain of a chronic illness is bad enough, but there’s a lot of emotional pain involved as well. A good amount of this is caused by remarks made by other people. Sometimes this is well-meaning (but uninformed) and other times it’s more malicious. After almost a decade with the disease, I’ve come up with some personal tactics to deal with these.

Read about them here: www.rheumatoidarthritis.net/living/sticks-and-stones-arent-the-only-things-that-hurt/

#Medicare Monday

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Nothing scares someone with a chronic illness more than changes in health insurance. So I have to admit that I’m terrified.

Today I start Medicare. 

This doesn’t sneak up on you. About six months before you’re eligible, you start getting mail and emails and phone calls from insurance companies trying to get you to sign up for all the supplemental policies that come along with the government-provided coverage. But sorting it all out, trying to figure out what you’ve got and what’s going to be covered, is a bit of a nightmare.

I take about a dozen prescription medications, not counting my biologic infusion. I searched carefully through the 25 or so prescription plans available to me until I found one that covered most of these meds for a premium that wouldn’t bankrupt me (at least not immediately).  As it was, I couldn’t find a plan that covered two of my drugs. One is a blood pressure medication, which is no big deal because there are loads of those. The other is the one that I consider critical because it provides amazing relief for my Sjogren’s symptoms. There is only one substitute that I can find and it doesn’t work as well and it has considerably more side effects. And even though it’s “covered”, it will still cost me more than $100/month.

The really scary part is that I can’t get anyone to tell me whether or not my biologic infusions are covered. I’ve talked to Medicare and they tell me that the fees for giving the infusion will be covered, but they won’t tell me if the drug (which runs about $15,000 retail) is covered. They need to speak to my doctor or the infusion company or both. Even if it is “covered”, if it’s a high-tier drug, it might only be covered at something like 50% — which is well beyond my capability to afford.

Right now I’m doing better than I have in years. My biologic, Simponi Aria (along with methotrexate), is working amazingly. I do not want to go backward. I would like to continue to feel almost human again.

I’ve been given assurances by a wide range of people including my rheumatologist, the infusion company, and even the great folks at Janssen (who manufacture the drug), that it should/will be covered. But I won’t know probably until a few days before my next infusion in June.

Sigh.

The interesting thing is that I consider myself lucky. Given the current uncertainty in the health insurance industry and the chaos that is going on in our legislature about replacing Obamacare, I’m glad I don’t have to face those challenges. At least I have a clear definition of what I’m facing.

I hope whatever you’re facing today brings a smile to you and those you love. Thanks for checking in.

Amazing Study on Expressive Writing – Thanks Galloping Grandma!


I want to thank thegallopinggrandma.wordpress.com for this intriguing story about the healing power of expressive writing.

Whilst lying dozing in my bed at the end of my day listening to the radio (because of the effort of watching television at that time of night ) I was suddenly aware of the mention of Rheumatoid Disease on a BBC programme called “All in The Mind”, so dragged myself into a sitting […]

via THE CURIOUS CASE OF THE HEALING POWER OF EXPRESSIVE WRITING — thegallopinggrandma

#HealtheVoices17

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This time last week I had the great privilege of being part of the opening session of HealtheVoices 17. This was the third year that Janssen has sponsored the convergence of online health advocates that represent a wide variety chronic illnesses.

There are times that I think my blog actually does some good (rather than just being a conversation with myself). But I was truly amazed at all the incredible work done by the 105 advocates who attended the conference. There were people with radio shows and podcasts and videos and who head up non-profits and speak before congress and sit on peer review panels for medical trials. The list goes on.

But the important thing is that this conference helps empower those who work daily to make the patient’s voice heard in the health care industry.

With all the important issues facing our nation today, none (IMHO) is more important than health care because everyone is touched by it. And like the canary in the mine shaft, those of us with a chronic illness are impacted the earliest and the most when changes in healthcare occur. We need to initiate the conversation about how proposed changes affect the quality and even the quantity of patients’ lives.

I’m in here, really.

I was very honored to be selected to attend and to gain so much knowledge and energy from both the other attendees as well as the amazing sessions I attended. But this is just a small handful of people and the American healthcare system is huge. We all need to make our voices heard, however we can in whatever manner works for us as individuals.

Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.