Sometimes it seems like RA can suck all the positive things out of your life, but it’s important that you enjoy your life as much as you can. In the seventh of 10 things I would like to tell my newly diagnosed self, I share some of this journey on rheumatoidarthritis.net here: https://rheumatoidarthritis.net/living/no-7-enjoy-your-life/comment-page-1/#comment-17987
So I had the second esophagus procedure this week, and that went pretty well. Hopefully that will solve the problem although there is a chance that I may need some additional testing, but not for a few weeks. Fingers crossed.
That’s the good news. The bad news is that the doctor discovered that what we thought was acid reflux is actually bile. So instead of taking one additional pill first thing in the morning, I have to take a huge tablet four times a day — 28 times a week. And I can’t take them with other pills or with food, so I’ve got this 4X a day thing that is completely offsync from anything else I do.
I counted the pills I take and it comes up to 30 pills per day which breaks into 20 prescription pills and 10 supplements. (Some of these are a single medication that I take multiple times per day.) That’s 210 pills per week or almost 11,000 pills every year. That’s not taking into account if I need Tylenol or other pain medication or Claritin for allergies, or anything else. In addition, I have a daily injection, a weekly injection, and an infusion every six weeks. Sheesh.
In other news, my knee has been bothering me since we came back from Havana. I wound up walking up (and down) three steep flights of stairs. Since that time, my knee has been getting more and more sensitive to pressure to the point that I actually nearly stopped walking. I was down to walking/limping the minimum 30 minutes a day then having to stop and rest/ice when I was done. Not a happy girl.
Last Friday I had an appointment with my orthopedic surgeon, since this is the replaced knee. Everything looked good on the Xrays. Where I indicated it was painful is on the bottom part of the knee where a tendon inserts into the knee joint and, assuming horses instead of zebras, my doctor did a steroid injection in my knee right there, just below the actual joint. Which is a good thing because you really can’t/shouldn’t inject into a replaced joint.
By the next day, Saturday, things had actually improved.
But then I did my personal impression of falling and not being able to get up. Directly on the knee.
We were at the movies and I had gone to the ladies room. On the way back I somehow tripped on the part of the floor that turns and starts to incline up into the theater, smacking my full (over)weight directly on the replaced knee joint. I couldn’t stand, I couldn’t breathe, it hurt so bad I couldn’t even cry. Of course it was a very loud movie and I didn’t think anyone could hear me, so I crawled/dragged myself along the floor until I got far enough into the movie theater that I got someone’s attention who went to find my husband and theater management.
Long story short, I found out that titanium is harder than flesh and bone (good thing). We went to the ER and, after Xrays and a couple of hours, they determined that the artificial joint was still firmly attached and none of the naturally occurring parts had been broken.
By the time we got home, I was able to put enough weight on it that I could get around with my walker and by the next morning I was walking without assistance, although with a limp. A week later it’s still very sore. I must say, however, that I don’t think I’ve ever had a more colorful bruise — even when I had the knee replaced originally. I was going to post a picture but it is still a bit too colorful for good taste. But it definitely has red, white, blue, green and purple hues.
The next couple of weeks are going to be busy with travel so I may be offline for a bit. In the meantime, I wish you the best health and happiness, and I thank you for checking in.
This is the sixth of ten things I’d like to go back and tell my newly diagnosed self about living with RA.
Being the micro-managing control freak that I am, asking for help is completely contrary to my nature. Having RA puts a whole new perspective on the situation. I share some of the things I’ve learned about asking for help (including how hard it sometimes is) in my recent article for RheumatoidArthritis.net here: https://rheumatoidarthritis.net/living/no-6-ask-for-help/
In the fifth of 10 things I’d like to go back and tell my newly diagnosed self, I talk about what has and hasn’t worked for me in trying to build a healthier lifestyle.
Read the full article here: https://rheumatoidarthritis.net/living/no-5-you-cant-be-perfect-but-you-can-be-better/
In the third of 10 things I’d like to go back and tell my newly diagnosed self, I talk about the importance of finding a rheumatologist you trust and some tips in building that trust.
Read the article on RheumatoidArthritis.net, here: https://rheumatoidarthritis.net/living/no-3-find-a-rheumatologist-you-trust/
This time last week we were just returning from our trip to Havana. Given that President Trump is supposed to tighten restrictions on Cuba again, I feel lucky to have been able to visit.
We went on a Norwegian Cruise Line cruise that gave us two full days and a night in Havana. The experience was amazing and impacted me in ways I couldn’t imagine. The people are incredible — friendly and well-educated. But it was a strange sensation to visit a truly communist country. While the populace may be leaning toward freedom and capital endeavors, the effects of the revolution (recent in terms of global history) are still very much apparent.
In other news, this week after our return from Havana I went in for corrective surgery for my esophageal stricture. This is a narrowing of the esophagus that makes it difficult to swallow and where food can get stuck, sometimes requiring emergency surgical intervention. Basically, I was under anesthesia and the doctor put a tube down my throat with a camera and a type of balloon that inflated and stretched out the narrowing. The camera also allowed the doctor to do a visual exam of my esophagus and stomach. The procedure went well, but there were some surprises. (I’m not much for surprises anyway, but I’m really against them when it relates to surgery.)
My esophagus was so constricted that my doctor couldn’t dilate it fully. In these instances, there’s a risk of rupture or perforation if you try to stretch it too much. This would require major surgery to correct. So he dilated it as much as he could safely and sometime after three weeks, I will go back in for a repeat procedure to finish things up. But in the process of the exam, he found some erosion of the stomach (probably caused by all the medication I take) as well as some indication of celiac disease. I have to take MORE medication now to protect my stomach. Biopsies will tell us if there are any infections or more serious issues like celiac disease or cancer. Sigh.
But other than being a bit sore and hung over from the anesthesia, I’m doing well. No pizza or crunchy chips and hot salsa for a few days but other than that, I expect a good recovery.
I hope you all recover well from any adventures in your life and, for those of you who celebrate the holiday, a happy Father’s Day this weekend.
In the second of my series of 10 things I’d like to go back and tell my newly diagnosed self, I try to make sense of sorting out all the information (real and fake) about RA. It’s available through RheumatoidArthritis.net here: https://rheumatoidarthritis.net/living/no-2-research-dont-panic/
As we make our journey with RA, there are times when we say to ourselves, “I wish I knew that then …” I’ve written a series of 10 things I’d like to go back and tell my newly diagnosed self. The first of these has been published on RheumatoidArthritis.net here: https://rheumatoidarthritis.net/living/no-1-its-just-a-diagnosis/
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.
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.