I had an appointment with my dermatologist today. In the next five business days, I’ve four medical appointments scheduled — all involving things poking me. Sometimes I have to wonder if it’s all worth it.
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.
All of us develop preferences for certain treatment options. Some people like infusions while others like the convenience of home injection. I’ve always been an auto-injector kind of girl, but I have friends that like the control that a traditional syringe gives them.
The first injection I ever gave myself was a blood thinner I had to inject daily for two weeks after my hip replacement surgery. I could barely feel the injection, but it was a standard syringe and I hated, hated, hated actually sticking the needle into my skin.
I’ve been on an off various treatments and while I prefer no needles at all, if I have to do an injection, I prefer the simple click of a button of an auto-injector. (Because I still hate sticking that needle in my skin.)
I’m now on a biologic and injected methotrexate and the MTX I use comes in a vial and I use a standard syringe. I’ve come to dread Sundays which is MTX day at my house. Then earlier this week, I learned about the Autoject 2. You basically take your standard syringe (filled with the appropriate medication), place it in the device and it works like an auto-injector. Zip. Injection is done with no pain and no drama. I started to do a video but here’s already a pretty good YouTube video showing how it works here: https://www.youtube.com/watch?v=fndalvwKF4s.
Apparently a lot of people use this for shots they give their kids and pets because it’s easier. I certainly found it easy to use and highly recommend it for anyone who struggles with traditional injections.
A couple of notes because finding detailed information on the product is a bit difficult. First, the Autoject 2 works with syringes that are 1 ml. or less — which works great with insulin and a lot of MTX dosages. I think there is a larger one for bigger syringes. Second, you have to be a bit careful. The auto-inject pens that I’ve used that come prefilled from pharmaceutical companies have a safety measure where the needle is retracted or covered after the injection is complete. That is not the case with this device. The tip of the needle still extends out until you remove the entire syringe.
I got mine through Amazon for about $33. It was essentially the same price I saw on Walmart and a couple of other mail order sites. Even though I only use it once a week, I definitely think it’s worth it and would certainly think so if I had to do an injection more often.
So, that’s my story and I’m sticking to it. (Get it? “Sticking” to it????)
Doing my happy dance now that I don’t have dread my MTX injection. I hope whatever you’re dreading (and we all dread something) turns out to have an easy solution as well. 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/