More, more, more

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Carla Kienast, pain, prednisone, Remicade, rheumatoid arthritis, Tramadol

I hate more drugs. Sometimes it seems like all I do is manage my and my husband’s respective drug therapies and it seems like I’m always swallowing a pill. But sometimes, I guess, more is better. We’ll see.

I saw my rheumatologist last week. It was the first appointment after the first two loading doses of Remicade. Per Remicade’s website, the recommended dosage for RA is 3 mg/kg of body weight repeated every eight weeks after the loading doses (loading dosage is one infusion at weeks 0, 2, and 6). Because I’ve “failed” at previous treatments, my rheumatologist started me at twice the normal dose (6 mg/kg) with anticipated infusions more often (every six weeks rather than every eight).

In some ways, the rheumatologist appointment was good because I was in terrible shape. Don’t you just hate it when your RA conveniently takes the day off when it’s time to see the doctor? It’s kind of like when your car quits rattling when you see the mechanic. There’s not much to talk about. But this time when I saw the doctor, my joints were swollen, I was in pain, I was fatigued, my hip bursitis was back, and I’d put on 15 pounds thanks to the interim prednisone supplement. The first two loading doses of Remicade clearly hadn’t had much, if any, effect. While I understand and accept that it can take several weeks for biologic treatments to start working, I have to admit disappointment that with each passing day I seemed to be getting worse. (Note that I’m also on 20 mg of Arava/leflunomide in addition to the prednisone.)

To me, changes needed to be made and my rheumatologist obviously agreed because she was the one who spoke first. In the short term, she’s reduced my prednisone to 5 mg/day to help slow the weight gain, but she also did a steroid injection for my hip bursitis to help calm that down, especially since we’re cutting back on the daily dosage. That did help, almost immediately.

In the longer term, she increased the Remicade infusion to 7 mg/kg. Other than a bit of a headache during the infusion, I haven’t noticed any negative side effects (or any positive ones for that matter), so I don’t know why I get nervous about upping the dosage. I trust my doctor and the Remicade site indicates that dosing can be as high as 10 mg/kg every four weeks. I just keep thinking that with all these drugs that I take, that there is some tipping point where my body will rebel at all the chemicals I put into it.

In addition to the changes to Remicade and prednisone changes, my rheumatologist has prescribed Tramadol for pain. She prescribed it early on in our relationship but I quit taking it because I took it at night and felt “hung over” the next morning. This time it seems to be controlling the pain but without so much of the after effects. Of course, I’m consulting now rather than having to show up at a corporate office every morning, so even if there is some carry over, there isn’t as much impact to my daily life.

So more Remicade, more pain medication, less prednisone. Two steps forward, one step back. (Or is it the other way around?)

I hope your day is filled with more of whatever makes you happy. Thanks for checking in.

Cause, Effect, and Prevention

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arthritis, Carla Kienast, knee replacement surgery, prednisone

I follow several blogs and one of my favorites is Living with RA written by Andrew. He not only conveys a lot of valuable information, he does it in a very personal and personable way. Andrew recently wrote about the compelling evidence demonstrating that RA has a negative effect on muscles.

I don’t doubt that RA impacts our muscular system. In fact, if you ask any RA patient who has been diagnosed for any length of time, I’d bet they’d agree.

What is not clear to me, however, is how much is cause and how much is effect. Since I was diagnosed (five years ago this month) I’ve had a hip and shoulder replaced, had three shoulder surgeries, one knee surgery, and I’m scheduled for total knee replacement in two weeks. The pain and disability that the surgeries cured, along with the recovery periods (sometimes months) have definitely slowed down my activity level. I used to walk three miles without thinking about it. Now there are days that I can’t walk across the parking lot. This drastic decrease in exercise has certainly lowered my fitness level.

Is there additional impact directly from the RA? Probably, but how much is hard to determine.

But what I have learned is that sometimes a little prevention goes a long way. My husband and I recently took a few days off. I knew there would be more activity than I’m used to and with sleeping in a strange bed, eating outside my normal diet, etc., I could potentially have a flare. So I started a prednisone taper at the beginning of the trip. I not only had more control over the inflammation, I had more energy and enthusiasm for the vacation.

Don’t get me wrong. Steroids are powerful drugs and I am in no way proposing that people take them indiscriminately. But I do think they have their purpose if used wisely and used well. And I believe that they can be used to prevent a flare just as easily as they can be used to recover from one. (Fellow blogger Andrew is like me with a love-hate relationship with steroids, but his is more a hate-hate relationship.)

Unfortunately, I’m paying the piper. I no sooner got home from vacation than I’ve had to travel two weeks for work (long hours, strange beds, bad food — again), which is why I haven’t posted for a while. I am off my RA drugs getting ready for knee surgery in two weeks. And, of course, it’s been raining every day that I’ve been here and will continue to do so for the foreseeable future. And because I’m this close to surgery, I can’t take NSAIDS and I can’t take prednisone.

All I can do is try to take the best care of myself that I can.

Sometimes that’s all any of us can do.

In the meantime, I hope that whatever “causes” you have in your life have brought happy effects. Thanks for checking in.

Week 2, 2 Pounds

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Carla Kienast, prednisone, weight loss

As a quick update, second week on the diet yielded another two pounds lost. I am a bit disappointed it wasn’t three pounds, but I added a few calories and carbs, so I really can’t complain. Last week was also the last week I was on prednisone, and even though it was only 2.5 mg/day (tapering off from 5 mg), losing weight while on prednisone is quite simply counterintuitive. I’m cutting back some of the “add-ins” from my diet this week and am hopeful that with those changes and the elimination of the prednisone, that I can make the three-pound goal.

Thanks for all the encouragement! And thanks for checking in.

Back in the saddle, again.

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Carla Kienast, Celebrex, Orencia, prednisone, rheumatoid arthritis

I felt somewhat unprepared for my rheumatologist’s appointment this morning. Like a lot of you who follow this blog, normally I have my list of symptoms and questions and concerns neatly organized (in my mind, if not physically on paper). Today I had nothing more than this premonition that she would recommend going back on the “big drugs” that I’ve been off since knee surgery. I did well on Mobic for several weeks, but lately the effect hasn’t been great and, given issues with my stomach, I stopped taking even that about 10 days ago.

The physical examination showed more joints that were swollen and tender than I had thought — particularly my feet. I didn’t have to tell her that it hurts to get out of bed in the morning.

So here’s the new drill: back on the Orencia and 10mg of Arava. Plus Celebrex. Plus a four-week course of 5mg of prednisone, tapering to a second four-week course of 2.5mg prednisone. Plus a steroid injection today. Plus Xrays of my feet.

Sigh.

I am counting my blessings. That I have a caring, compassionate rheumatologist who listens to her patients. That I have open access to excellent healthcare (the Xrays were a short walk down the hall). That I have good health insurance that permits me to pay for the healthcare and prescription drugs. That I have a good job that provides the insurance and the salary to pay for the deductibles.

However, I can’t help but feel a bit deflated. I really wanted something simple like Mobic to work. I didn’t want to be back on weekly injections that make me feel as much like a sick person as the disease itself. I didn’t want to go on prednisone with associated weight gain and complications — even though it will make me feel better. I didn’t want another pill — Celebrex — and the second pill (protonix to protect my stomach) in my arsenal of drugs I take every day.

I know. I sound like a whiney baby. It’s like I want to look like a super model, but I don’t necessarily want to diet and exercise. I want to feel good and stop hurting and stop the joint issues, but I don’t want to take the drugs. I guess being a grownup sometimes means doing those things you don’t want to anyway.

Mostly know that I am thankful for my blessings and for my friends (cyber and otherwise). Thanks for checking in.