Actemra(2)

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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.

Going Naked

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(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.

Mark your calendars for the Joint Decisions Web Chat!


Many of you that follow my blog know that I’m really delighted to work with the people at Creaky Joints (www.creakyjoints.com). One of my favorite things they do are the Joint Decisions web chats. The next one, “Shaping Your Story: Managing the Mental and Emotional Challenges of Life with RA,” is next Wednesday, August 5 at 6:00 pm Central. What’s really exciting to me is that this chat will feature Eduardo Flores, aka Rheumatoid Arthritis Guy (www.rheumatoidarthritisguy.com). RA Guy was one of the first blogs I found after my diagnosis and his insight, honesty, and wisdom helped me as he has helped so many others. I encourage you to “tune in” for this chat that will focus on the importance of emotional well-being for people living with RA. In addition to RA Guy, the chat will feature health psychologist Dr. Laurie Ferguson of Creaky Joints and rheumatologist Dr. Theresa Ford.

Here’s the registration link: http://po.st/8uwCyU

 

Skin in the Game

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Skin in the Game

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/

View from the Well (reprise)

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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.

Sometimes, not always, but sometimes, I believe that living with a chronic disease is like living in a well.

  • 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.

Mariah and Me — Seven Years Later

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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/

 

Actemra

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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.

RheumatoidArthritis.net TrialLink


There’s great news from RheumatoidArthritis.net. Please see the following announcement concerning TrialLink. To see the original announcement (with all the working links), visit RheumatoidArthritis.net here: http://rheumatoidarthritis.net/clinical/you-can-make-a-difference-with-rheumatoidarthritis-net-triallink/

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We are excited to let you know that there is a new opportunity for you to make a difference in rheumatoid arthritis (RA) research!

While most of us know that new medicines to treat RA are being examined in clinical trials, few of us actually have the tools to access those trials. We want you to have a place to share your voice and really make a difference in the future of RA treatment.

Starting this month, we will be offering the chance for RheumatoidArthritis.net community members to learn more about clinical trials performed by organizations researching new treatments for RA.

What sort of research is being conducted for people like me?

There are many ways to take part in research, one of which is to participate in a clinical trial.

      • Treatment efficacy & safety: This could mean taking part in a study for a new treatment that is in development, or even for an existing medication that is now being examined in RA.
      • Trial design and drug development: Researchers may also look for your feedback in the design of a clinical trial or the treatment itself (for instance – should it be an injection or a pill?). To learn more about participating in clinical trials, click on the link above and go to the RheumatoidArthritis.net website.)
      • Behavioral and impact studies: Other research focuses on gathering information about how people with RA manage their condition and how it impacts their daily lives. Results from our own RA in America survey demonstrate the far-reaching impact of RA.

Why does this matter?

No one understands what it is like to live with RA better than the RA community! Taking part in cutting edge research or providing input on how studies are conducted will have a direct impact on those living with RA.

How do I find out about new research opportunities?

When new research opportunities become available, we will share those with our community members via email and social media. Please note that registered members of the community will always receive the first notifications regarding opportunities.  You can register by going to the link above and becoming a member of the RheumatoidArthritis.net community.

Progress!

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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.

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