My friends at Creaky Joints and Joint Decisions are holding one of their great Twitter chats featuring my personal (super) hero, Rheumatoid Arthritis Guy and Arthritis Introspective on Tuesday evening, August 25. The topic is Managing the Mental and Emotional Challenges of Life with RA. Please join in!
I believe strongly in an individual’s right to make personal choices and this is particularly true when it comes to things like religion, politics, and medical treatments. And choices on medical treatments include whether you embrace what we’ve come to consider as “Western” (pharma) treatments or “alternative” treatments or some of both.
One of my friends (who also happens to be an outstanding voice in the RA community, http://thelifeandadventuresofcatepoo.blogspot.com/) embraces the Paleo diet as part of her overall health regimen. While controversial in some circles, it has provided amazing results for her. Another one of my friends is a walking encyclopedia of natural supplements and has a deep understanding of how many of them are metabolized and used by the body. They both see positive benefits of these “alternative” treatments.
I don’t normally discuss personal beliefs in a public forum (because they are, after all, personal), but I tend to come down on the side of Western pharmaceuticals. I bring this up now because there was a recent article in the New York Times by Aaron E. Carroll, MD, MS entitled, “Labels like ‘alternative medicine don’t matter. Science Does.” (http://www.nytimes.com/2015/08/11/upshot/labels-like-alternative-medicine-dont-matter-the-science-does.html?_r=0) This article states my views/concerns/beliefs more eloquently that I probably can. In this article, Dr. Carroll points out that we need to reframe the discussion. There aren’t therapies or “alternate therapies”, there are just therapies. They either work or they don’t.
The primary difference is that there are (usually) lots of scientific studies behind Western medicine and, while there might be thousands of years of anecdotal evidence behind “alternative” treatments and medicines, there often isn’t objective, scientific research done on them. This doesn’t mean they’re not valid. This doesn’t mean they don’t work. And this certainly doesn’t mean (in my personal opinion) that an individual shouldn’t incorporate them into his/her personal treatment plan if they believe they will help. But it does mean that a licensed physician may be unwilling or unable to prescribe something to a patient without documented evidence from recognized clinical investigation that it is both safe and effective. And while there are naturopath and homeopaths and other “alternative” health practitioners who do prescribe them, Dr. Carroll points out that “mainstream” doctors can and do regularly prescribe “alternative” treatments that have shown merit after clinical investigation including such things as diet, exercise, folic acid for pregnant patients, and even things like acupuncture and massage.
I’ve wandered a bit off course here, but Dr. Carroll’s point is that we need to quit separating therapies into mainstream and alternative categories and simply separate them into therapies that have been studied and proven to work vs. those that have not, regardless if the therapy has its origins from a pharmaceutical company or from historical practice. (As an aside, many pharmaceutical miracles have come about because scientists started with research into folk medicine, discovering the elements that were effecting the positive results and refining them.)
I take supplements. For example, on a daily basis I take lysine to help control the massive fever blisters I get and I also take cinnamon to help blood sugar levels. But the supplemental therapies I use have two things in common. First, they have been clinically studied and shown to be effective. Second, and very importantly, they do not interfere with the other therapies I’m on, which include things life-saving prescription blood pressure medications and powerful biologic medication for my RA.
My friend, who loves me, will occasionally send me information on a new supplement or natural product or other therapy for RA. Her goal is to make my life better and I am very blessed that I have someone who cares that much about me. (And yes, she subscribes to this blog so she knows I’m talking about her.) My concern is that neither she nor I have any way of knowing if one of these approaches will in some way interfere with the delicate balance of the drugs I’m on because it doesn’t have the clinical trials behind it. That doesn’t mean it doesn’t work, but it does mean it could have disastrous results for me.
Even with alternative/natural/homeopathic remedies that do work, there are issues. Generic drugs have, for example, time and time again, been shown to not always be the equivalent of the original. And generic drugs have met FDA standards and are produced in tightly controlled environments. Supplements and alternative medicines are not subjected to these standards. So if generics are a step away from the original, how far away are supplements that are produced without oversight or regulation? I am not saying that supplements are bad. I am saying that if you make the personal decision take them (as I have), then you need to also take the personal responsibility to do your research on who produces them and how they are produced. You want to get the safest most effective supplement you can.
I’m not a big fan of labels. Race, gender, age, sexual preference all tend to be labels that divide us, sight unseen. But some labels, such as the nutrition labels on food, can help us live better, healthier lives. So I’m all for taking of the “Western”/”alternative” labels off and going for the “proven”/ and “yet-to-be investigated” approach instead.
I hope whatever therapies you are on – Western or alternative, proven or yet-to-be investigated – that they help make a happier, healthier you. Thanks for checking in.
So I saw my rheumatologist today. She could tell that I haven’t (yet) gotten the anticipated results from Actemra, so she’s increased the dosage from an injection every two weeks to an injection every week. The good news is that I haven’t had any side effects and my labs look good, so it should be safe to increase the dosage.
I also got a steroid shot. I had asked that she inject my ankle. My ankles have never really been a problem but lately they’ve been very painful, especially my right one. But the bursitis is also back in my left hip. She said she’d inject my ankle if that’s what I wanted but she could only inject 40 mg of steroids in the ankle, whereas she could inject 80 mg in my hip, and therefore the overall effect of the steroid would be greater.
So we’ve upped the ante on the medication. Let’s just hope the insurance and the specialty pharmacy and all the other holders of red tape go along with the plan and, once that happens, that there are some good results.
I hope the things that increased in your life today made you happy.
Thanks for checking in.
(Sorry, this post is not about skinny dipping …)
A few years ago Michael J. Fox, well-known for his iconic role in the Back to the Future movies, spoke to Congress about Parkinson’s disease, with which he’s been afflicted for a number of years. In preparation for his testimony he stopped taking his Parkinson’s medicine. His reasoning was that he wanted people to understand the reality of the disease — not the disease masked by drugs. He’s been both criticized and praised for this approach, but regardless, his actions struck a nerve with many people including me.
RA, for many people, is an invisible disease because it is controlled enough that they live relatively normal lives and they (that insidious phrase), “don’t look sick.” But it’s generally because, like Michael J. Fox’s Parkinson’s disease, it’s controlled by medication and sometimes just sheer will.
I go see my rheumatologist tomorrow. She recently started me on a new biologic (Actemra) because the Kineret I had been on stopped working (as did the Remicade and the Xeljanz and the Cimzia and the Enbrel and all the other drugs before that). While on Kineret I had also been taking leflunomide but had to stop because of liver enzyme problems. When that happened, she started me on the prednisone. Then when the Kineret also stopped working, she left me on prednisone to help phase me into the new drug. So I’ve been on prednisone since mid-March.
Well, I’ve phased myself off the prednisone, so I’m only on the Actemra. I did this for a couple of reasons. First, I don’t like being on prednisone for long periods of time. (I have 15 pounds of added reasons for getting off of it this time.) The second reason is that when I see my rheumatologist, I want her to be able to clearly judge how effective (or not) the Actemra is without the masking effect of the prednisone.
Prednisone has a wonderful effect on me. It makes me feel/look/act like a healthy person. It also makes it very difficult for me to go bouncing into my rheumatologist’s office claiming that my biologic isn’t working when none of my joints are swollen and I don’t hurt anywhere. Without prednisone, it’s a different story.
I’ve only had three Actemra injections — each two weeks apart, so (thanks in part to the delay in getting insurance clearance), I’ve only been on the drug for four weeks. And as many biologics as I’ve been on, I know that it can take up to three months for a drug to be effective. So while I’m not throwing in the towel on Actemra (yet), I can tell you that right now it isn’t working. And I want my rheumatologist to clearly see the (non) effect of Actemra.
It’s been a rough few weeks. I had high hopes for Actemra because the day after my first injection I felt really well. The day after my second injection I had one of the worst flares of my life and I’ve never fully recovered. I’m still flaring. Some days are better than others and some days it’s all I can do to get out of bed.
But my rheumatologist needs to see that so we can decide what we need to do. I won’t let my RA hide behind the mask of prednisone.
I hope whatever mask you’re wearing today comes with a smile.
Thanks for checking in.
I have a new dermatologist. It wasn’t really a choice. My previous dermatologist of many years passed away and the practice was sold. My records weren’t even in the system when I called to make my annual skin-check appointment. It was time for a change.
My PCP recommended a practice that has several physicians and is conveniently located to my gaggle of other doctors. Looking at their website, I was a bit hesitant because the doctors all looked young, blond and thin. This, I thought, is a group devoted to trophy wives and Botox. The Dallas area is consistently rated one of the most vain cities in the U.S.. beating out cities such as Las Vegas and Miami. (I know, right? You should live here.) Looking a bit closer, however, I noticed that one of the doctors specialized in people with rheumatoid arthritis and other inflammatory conditions. It took me more than two months to get the first new-patient appointment, but I had my initial appointment last week with very positive results.
We don’t often think about it, but skin is the body’s largest organ…
Read the rest of the article here: https://rheumatoidarthritis.net/living/skin-in-the-game/
As I’ve sort of felt like I’ve been living in a well lately, I thought I’d revisit one of my favorite posts from 2011. Hope you enjoy.
- Living in a well makes you different and can isolate you from other people.
- To do anything “normal” you first have to get out of your well, i.e., get over the pain, fatigue, etc.
- Sometimes you need mobility aids to get you out of your well.
- When people realize you’re in a well, they talk down to you.
- The longer you’re in the well, the deeper the well gets, i.e., the harder it is to get out of and the less chance there is for a full recovery.
- It’s dark at the bottom of the well, but sometimes there is light in the form of a new therapy that offers hope.
- People who have never lived in a well may care, but they can never fully understand the experience.
- Being in a well is a true underground movement and connecting to other well-dwellers is a good way to keep your sanity and keep hope alive.
- Exercise makes it easier to climb out of your well each day.
- Only you have control over how deep and how dark — or how shallow and light — your well is.
I hope whatever you find in your day, it finds you well.
Thanks for checking in.
It turns out that my friend and fellow blogger Mariah Z. Leach and I received our RA diagnosis about a month apart. Mariah “celebrated” her seventh diagnosis anniversary in June and mine is coming up shortly in July. Mariah has encapsulated her seven-year journey on her personal blog.
Let’s face it, many of us suffered with symptoms months or even years before receiving a diagnosis – so we had the disease, we just didn’t have a name for it. But having a diagnosis is a watershed event. In one moment you go from searching for what’s wrong with you to looking for a treatment plan. You go from being “healthy” to being labeled with a chronic disease. The diagnosis is the first official step to what is currently a life-long journey.
Read the rest of the article on RheumatoidArthritis.net: https://rheumatoidarthritis.net/living/mariah-and-seven-years-later/
So after all the doctor visits, lab tests, phone calls, insurance approvals and associated confusion, I received my first shipment of Actemra — the latest biologic in my quest to find something that works. It’s an Interleukin-6 inhibitor and while I’ve read the literature on how this drug works, the main thing is that it’s a different kind of drug than I’ve taken before. I’ve worked my way through all the other drugs except Actemra and Rituxan and since I’ve “failed” on everything else, the hope is that a different kind of drug will bring some hope. The issue is that I seem to build up an immunity to the drugs — they’ll work for a while, then eventually my body figures them out and builds up a resistance to them, just like it will build up a resistance to any other biologic agent like germs and viruses.
I was most recently on Kineret, which is a daily injection, so the opportunity to switch to a bi-weekly injection was a welcomed relief. Additionally, Kineret has a citric-acid based preservative in it and taking it felt a whole lot like pouring lemon juice into a paper cut. Every. Single. Day. (Did not make me look forward to taking the drug.)
So I took the first injection last Wednesday evening and was pleasantly surprised that other than the first little poke of the needle, I didn’t feel the injection at all. So far so good.
It wasn’t until sometime Thursday afternoon that I realized that I felt better than I had in months. I had been otherwise distracted on Thursday. I had to get up at 5:00 am in order to get my husband to the hospital for an out-patient procedure. The procedure was supposed to take about 30 minutes but he wound up being in surgery for more than five hours. So while I was sitting in the surgical waiting area I realized that I wasn’t as sore and stiff as I had been for a long time, even after spending hours in a somewhat uncomfortable sitting area.
Unfortunately that feeling of comfort and euphoria only lasted about 24 hours. By the time I was able to take my husband home on Friday, I was sore, swollen, and gimping around all over again.
But that brief reprise gives me some hope. It takes time for biologics to work and I am hopeful that if it worked for a short time on the first injection, it will work longer and longer each time.
I hope that your day brings relief and happiness as well. Thanks for checking in.
PS: My husband is doing great after his procedure.
A few months ago I gave a shout-out about Healthline’s invitation to share RA-inspired tattoos. I’m glad that they, not I, had the challenge of sorting through what must have been a dazzling and moving assortment of tattoos. Check out the top picks here: http://www.healthline.com/health-slideshow/rheumatoid-arthritis-tattoos.
After what seems like forever that I’ve been whining, I thought I would update the blog with some positive progress. One thing I’ve learned over the years is the truth in the statement, “This, too, shall pass” and many of the dispiriting things with which I’ve been dealing lately are, thankfully, on their way out.
- The insurance hurdles on my new RA drug, Actemra, have been cleared and I received my first shipment from the specialty pharmacy today. There was a mix up in the dosage amount (they sent me enough for a weekly injection rather than one every other week), so the good news is I have twice medication as much for the same copay. I will provide some updates once I start taking it and it has some time to start working. And hopefully this will also mean that I can start tapering off the prednisone.
- Physical therapy on my knee is almost over. My last appointment is tomorrow. I do think that it’s helped, which is a good thing. It’s also gotten me into the swimming pool for a workout either before or after my appointment which is even a better thing.
- I had the diagnostic procedure for the GI issue and things are about as good as they can be. There wasn’t anything horrible found and the issues I was having don’t seem to be related to my RA or other inflammatory diseases which is all good. I’m on a two-week course of medication to calm things down. At some point in the future if I develop issues again, I may need to have some corrective work done, but for right now, things are improving.
- The antibiotics seem to have cleared up the infected tooth I had.
We’re still facing some of my husband’s medical issues and work continues to be a bear, but there is a huge sense of relief each time one of these major things is resolved.
Thanks so much for listening to my whining and for all the great support I have received the last couple of weeks. There are many things for which I’m grateful and the virtual friends I’ve made through this blog are certainly at the top of the list.
I hope that whatever is on top of your list today brings a smile to your face. Thanks for checking in.