15 Thursday Sep 2016
Posted in Medical, Rheumatoid Arthritis
Tags
I have a love/hate relationship with prednisone. If you have RA or similar inflammatory condition, you will very probably become acquainted with the drug. Read more about it here: https://rheumatoidarthritis.net/living/youve-got-to-lovehate-prednisone/
22 Wednesday Jul 2015
Posted in Rheumatoid Arthritis
(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.
16 Saturday May 2015
Posted in Rheumatoid Arthritis
I consider myself a good patient. I bet if you took a survey of my doctors and asked them if I am a good patient, they would also check that box. A significant credo in my life is that a treatment plan won’t work if you don’t follow it. After surgery I have rested, iced, exercised, strengthened and physical therapied myself back into shape. For RA, I have swallowed pills, exercised, X-rayed, and watched my diet. I have also injected once a month, once every other week, once a week, and once a day as well as suffered through hours-long infusions that did nothing more than left me with a headache and nausea.
But I am also an active participant in my health care and, at the moment, I am
Attribution: Shopify.com
actively NOT taking my biologic.
It didn’t start out that way. At the end of March, my rheumatologist took me off leflunomide (Arava) because my liver enzymes were elevated. When I saw her in mid-April before the trip, she started me on 10 mg of prednisone to keep me going through our vacation. I was hopeful that she would also switch me off the Kineret, which is a daily injection because (1) I really didn’t think it was working anyway and (2) I really didn’t want to babysit 14 pre-filled syringes all over Europe. But she was reluctant to take me off both leflunomide and my biologic without a different treatment and she didn’t want to start a new medication right before I left the country for two weeks. So off to Europe I went, still on the Kineret.
Things went pretty well until one day in London there was a mishap with the mini-bar fridge where I had stored my Kineret. The remaining syringes spent at least 12 hours being warm which is not what you want to have happen to a biologic that’s supposed to be kept refrigerated. That event coincided with the fact that I was getting sick so I made the decision just to forego any more Kineret until after I got home. Either it wouldn’t work because it had gotten warm or it would work and I would potentially get even sicker because my immune system would be further compromised.
So since that time (a little more than two weeks ago), I’ve taken nothing for my RA except for 10 mg of prednisone a day. I did refill my Kineret prescription when I got home. And I’m pretty much over the crud I had. I just can’t seem to get motivated to restart the Kineret. I don’t think it’s working for me and frankly, I hate the daily injections. The prednisone seems to be enough to keep the inflammation generally down and the flares at bay without being strong enough to interfere with sleep or produce any of the other noticeable side effects.
So here I am, Ms. Poster Child for patient compliance being on strike against taking my biologic. Not exactly an earth-moving revolution, but for me, it’s a pretty significant step.
I don’t know that prednisone is a long-term solution. While I love all the good things it does for me, it has a very dark side. But I’m down to two biologics that I haven’t tried yet, Rituxan and Acterma. Given the choice, I’m not sure I wouldn’t just rather ride the prednisone wave a bit longer.
I see my rheumatologist in about 10 days. My plan is to stay off the Kineret until I see her again. Then we’ll see what comes next and whether I can regain my “good patient” status.
I hope whatever revolt you happen to be leading at the time is a huge success. Thanks for checking in.
08 Sunday Mar 2015
Posted in Medical, Rheumatoid Arthritis
It’s been a crazy start to the year. I reported that in late January and early February I had been working 10- to 14-hour days. To help me make it through the added stress and increase my energy I added 5 mg of prednisone to my daily cocktail of drugs.
I have discussed the occasional use of low-dose steroids with my rheumatologist and I understand what guidelines I can do and which I can’t. A short time on steady dose or a taper is permitted without having to set up an appointment to discuss with her. We’ve been through enough that she trusts me to know when I need it and when I don’t.
So it’s been about three weeks since the project wrapped up and since I went off the prednisone. At first I thought I was suffering from steroid-rebound, feeling worse because I’d stopped the prednisone. But after this length of time, I’m not leveling off, I’m getting progressively worse.
My joints are not only swollen, they’re painful. There are times that my ankles hurt so badly I can barely walk. It’s difficult for me to cook or even to work at the computer for too long because of the pain in my wrists and hands. Bending over is nearly impossible for me as my spine goes through a serious of painful pressure points as I bend and straighten.
If you’ve visited my RA drugs page, you know that I’ve worked my way through most of the biologics plus a couple of the DMARDs. I’ve only been on Kineret for 2.5 months. But given that most biologics will reach their effectiveness in three months, I should be getting better, not worse.
I was originally optimistic about Kineret. I almost immediately started feeling “better”. When I saw my rheumatologist the first time after starting Kineret, my joints were still swollen and tender but not as much as they had been on Remicade. I was definitely trending in the right direction.
Now, not so much.
I’m not supposed to see my rheumatologist again until mid-April. Until then I’m supposed to be taking my Kineret. (By injection. Every. Single. Day.) Taking a biologic drug is a commitment. It’s a conscious decision that the potential side effects are outweighed by the positive effect of RA symptoms. Taking a biologic that doesn’t seem to be working is something else altogether.
I need to go have my labs done. Then I’m going to move up my appointment with my rheumatologist. I don’t want to change drugs again. For one thing, I’m running out of drugs to try. But I also don’t want to keep taking a drug that apparently isn’t working.
There are other things in my life that are causing stress (new working arrangement with my client, my husband’s health issues, etc.). All this combines to just basically discourage me.
I keep reminding myself of the ancient wisdom that’s come down from the ages. No truer words have ever been spoken than, “This, too, shall pass.” And being a person of limited patience, like the sign says, “Now would be good.”
I hope that whatever passes by your life brings you a smile. Thanks for checking in.
29 Monday Sep 2014
Posted in Rheumatoid Arthritis
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.
02 Tuesday Jul 2013
Posted in Medical, Rheumatoid Arthritis
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.
06 Monday Aug 2012
Posted in Health, 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.
09 Monday Jul 2012
Posted in Medical, Orencia, 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.
