Some of the treatments for RA are scary, but NOT treating RA can be devastating. Read why I believe this here: https://rheumatoidarthritis.net/living/nothing-is-worse-than-nothing/
Wouldn’t it be great if we had some kind of visual indicator about how our RA was really doing and whether or not our treatment plans were working? How about an RA bio-decoder ring. Read about it here: https://rheumatoidarthritis.net/living/i-want-an-ra-bio-decoder-ring/
I am really so frigging tired of having something wrong with me all the time. Sometimes it just seems like all I do is go to doctors and do tests and take medication. Now it seems there is a good chance I have yet something else new. And not just any old everyday something, but a “rare” disease that has no cure, is progressive, and the probable solution is some fairly serious surgery.
I reported earlier that, thanks in part to RA, I had developed problems swallowing and imaging showed a narrowing in my esophagus. I went through two separate esophageal dilation procedures where, under anesthesia, I had a tube inserted down my throat that had a special balloon that inflated and stretched out this narrowing. While those procedures returned my esophagus back to normal size, they didn’t solve the problems I’ve been having swallowing.
I went back to see my gastroenterologist (who, next to my rheumatologist is one of my favorite doctors of all time). It turns out that when I had the barium imaging done, the radiologist left of a very important piece of information. The imaging showed a distinctive issue (called a bird’s beak) that is basically only attributable to achalasia.
Basically achalasia is caused by damage and/or destruction of the nerves in the esophagus. This, in turn, prevents the esophagus from working correctly and the opening to the stomach from functioning as it should. Guess what one of the leading culprits of this nerve damage is? Right. Inflammation.
I am going in next week for some definitive testing to rule out some other, less serious spasm conditions. It’s called esophageal manometry. It’s not pleasant, involving a tube down my throat while I’m awake. If you’re interested, you can read more about it here: https://my.clevelandclinic.org/health/articles/esophageal-manometry-test. While it takes a couple of weeks to get the interpretation back, the test will definitively tell us what’s going on, so I’ll know whether I’m suffering from a rare, incurable disease or simple run-of-the-mill spasms. Oh, and Medicare will pay for the test, but won’t pay for the doctor to read the test results. Sigh.
One of the things that apparently helps is taking a calcium channel blocker which is often prescribed for high blood pressure. I’m already taking one of those, so I can’t say it’s helping much. Interestingly enough, another thing that helps is peppermint oil. So for the moment, I’m mainlining peppermint Altoids. (Seriously. I wonder if I can get Medicare to pay for them?)
In other news, my TKR knee continues to plague me. I’ve given up and my doctor has ordered some nuclear imaging scans (requiring blood draws and injections) which I’ve scheduled after the esophageal manometry, sandwiched in between Labor Day and my next infusion. Between all that and my upcoming flu shot, I am once again going to feel like a pin cushion.
I really, really hate this crap.
I hope your days are going better than mine seem to be at the moment. Thanks for checking in.
Even as a child, “can’t” has been a four-letter word that I’d rather not have in my vocabulary. Finding out that I can’t do things because of RA has been a particularly painful lesson for me. I elaborate more on my latest article for rheumatoidarthritis.net, here: https://rheumatoidarthritis.net/living/the-frustration-of-cant/
What does self care mean to you? For many of us, it’s that much-needed time that we take for ourselves. I take another look at a more basic, personal definition of self-care in my latest post for RheumatoidArthritis.com here: https://rheumatoidarthritis.net/blog/another-view-of-self-care/
On Wednesday, August 2, FDA advisors voted 12-1 against approving the promising new RA drug, sirukumab. In a field dominated by TNF-targeted biologics, this was a new anti-IL-6 drug. Actemra and the recently announced Kevzara are the only other two IL-6 drugs on the market. While the trials proved that the drug’s effectiveness is “robust”, the primary concern, as reported by Medpage Today, is the drug’s safety, although earlier reports also mention potential flaws in the trial design that could impact the trial’s reported results.
I have mixed emotions about this announcement. On one hand, I hate to have major setbacks for what appears to be a great new option for RA patients, on the other hand, I want our drugs to be as safe as possible and applaud the caution in withholding approval.
There was another discordant note in this news story, however, that took me aback. This was the soundbite from the one person who voted FOR approval of the drug — he was the “1” in the 12-1 vote. His name is James Katz, MD and he is the director of the rheumatology fellowship and training branch of the NIH’s National Institute of Arthritis and Musculoskeletal and Skin Diseases in Bethesda, Md. According to MedPage, he said, “This drug doesn’t scare me any more than the other biologics. I’m scared of all the biologics.” And this is the guy who voted for approval???
Why does this bother me?
In a world of fake news and quotes taken out of context, I went in search of the full statement to see if he elaborated further. I was on a panel recently with another leading rheumatologist who stated, “RA is a serious disease and it takes serious treatments to combat it.” And let’s face it, serious drugs can be scary. I thought perhaps that Dr. Katz’s comment about biologics were along these lines.
But other than the mention in Medpage, I haven’t (yet) been able to find anything further on the comment. (I’m still looking so if you find it before I do, please let me know.)
My concern is the effect of these words can have on RA patients, particularly those who are contemplating a biologic for the first time. Yes, it’s true that biologics can have serious side effects. But it’s also true that thousands of thousands people use them on a daily basis without problem and are able to lead fuller, more productive lives by helping control the devastating effects of this disease. While treating RA is serious business, NOT treating RA is even more serious. Without treatment, RA can be debilitating and, once the damage is done, it cannot be reversed.
I personally am on a biologic and methotrexate and I am doing better than I have in a long while. But that’s not the right answer for everyone. I think treatment plans need to be personal, that they need to be decided upon by the patient and the doctor, and that the full mosaic of information needs to be considered when making that decision — not just a soundbite.
I hope the soundbites in your life today are happy news. Thanks for checking in.
This is the final installment of ten things I’d like to go back and tell my newly diagnosed self about living with RA.
This series of things about what I’d like to go back and tell myself was inspired by a book called, Rules for Kids. It was a collection of 187 rules compiled by two girls who both had younger sisters with which to contend. I heard about it on a television news story. The news story didn’t cover all 187 rules, but it gave a few examples, and I was especially struck by #105 – Tie your shoes or you’ll fall down.
When you think about it, that’s pretty important advice — especially those of us with RA.
Read the rest of the article on RheumatoidArthritis.net: https://rheumatoidarthritis.net/living/no-10-tie-your-shoes/
It’s been one of those weeks and, being black and blue and sore, I’m glad other people aren’t scheduled to stick sharp objects in my poor veins for a while.
I’ve written before about how much of a needle-phobe I was when I was younger. When you have RA, you pretty much have to get over that. But occasionally, like this week, sometimes enough is enough.
I am pre-diabetic so I take a daily injection to help control my glucose levels. It’s a short, tiny, tiny needle and I don’t even feel it, so it’s no big deal.
On Sundays, I take two injections. In addition to my daily glucose shot, it’s also methotrexate day. I hate this one because even though I use a pretty fine (25 or 30 gauge needle), I have problems actually getting the needle inserted (more about this later).
Monday was my infusion day. There was a new infusion nurse. My doctor has changed the company that does the infusions. My old infusion nurse was great. I have tough veins but she figured out what worked and usually got the IV started on the first try and I seldom bruised afterward. The new nurse, even though I told her what had worked in the past, didn’t do as well. She hit a vein the first try but then it blew out when she irrigated it. So we tried a couple more times. Finally, her supervisor tried a smaller gauge needle and found a vein and (after 45 minutes of poking me with sharp objects) finally got my 30-minute infusion started.
I turned black and blue and every vein that is worth its salt has been poked and bruised but I had to get labs done. I waited a couple of days hoping my veins would heal up and headed to the lab. I love the lab. They’re great and they know me and immediately start reaching for the small butterfly needles when I come in. But when I went in I told them I wanted them to look first and if they wanted me to wait a few more days to heal up, I would. After a couple of them looked and thumped and consulted, they decided I had one vein that would work. The tech hit the vein between two knuckles on my right hand on the first try and the tube filled quickly. (Happy dance!) Then it just … stopped. We still needed two more tubes.
At this point we’re committed because the order has been started in the computer, the labels have been printed and the first tube has been drawn. I won’t tell you how many times I got stuck trying for those last two tubes because it was WAY over how many times their lab policy says you can stick a patient. But I just wanted to get it done and not have to come back, so I told them to keep trying. Which they did. Time and time again. Finally, we found something that would work and they took only the bare minimum amount that they needed.
So, so far this week, I’ve been stuck 17 times. Sigh. #PinCushion indeed.
On a related subject, I don’t know why I have such problems with my MTX injection. I use a standard vial and syringe, but I have major issues getting the needle to go in. I’ve tried different gauge needles and everything I can think of. Today, in a discussion in a Facebook study group I’m in, someone mentioned that they use an autoinjector for their MTX injections and it works amazingly. Apparently you fill up your regular syringe, put the whole apparatus in the autoinjector and push the button. I’ve always preferred the autoinjectors for my biologics but I wasn’t aware that you could get them for use with regular syringes. Apparently a lot of people use them to give their pets injections. At any rate, I’ve ordered one. It should be here in time for my next MTX injection, so we’ll see. I’d be interested to know if anyone else has used these and what your experience has been.
So that’s my life at the moment. Colorful (at least black and blue) and full of holes. I hope you life is full of good things that make you smile. Thanks for checking in.
In the ninth of 10 things I’d like to go back and tell my newly diagnosed self, I talk about the unpredictability of RA and the frustrations that come with having to reschedule your life. Patience has not been one of my virtues, so having to deal with these issues has been one of the big lessons of having the disease.
Read the entire post here: https://rheumatoidarthritis.net/living/no-9-take-one-day-at-a-time/
When I get asked what positive things RA has brought to my life, I usually burst out laughing because the question is so absolutely ridiculous. Except for the fact that without RA, I never would have found the amazing community of people with RA. It has been my strength, my inspiration and my passion. I think this is critical to anyone with a chronic disease like RA.
Read the full article here: https://rheumatoidarthritis.net/living/no-8-find-community/