I get a number of hits as a result of searches for information about Simponi. To make it easier for people to find the information they’re looking for, I’ve created a new page “Simponi Synopsis” that will act as a repository and chronicle of my experiences with the drug. Those of you who are interested can also use the search feature on the blog. I hope this information is helpful.
I don’t know how I could have forgotten about the fatigue. When I got home Friday afternoon, it had set in. Not the “I’ve had a rough day at the office tired,” but that bone-deep, wrenching “I don’t want to move a muscle, just put me to bed” kind of fatigue that comes with RA. While the folic acid I’ve been taken has helped ward off the fatigue, I could tell Friday night that the way I felt was a sure sign that the second Simponi shot had finally worn off, exactly on time, four weeks after I took it. So I was in bed, asleep, by 9:00 pm.
And when 8:00 am Saturday morning rolled around, did I want to go to my water aerobics class? Not hardly. But I did. Let me tell you, it was tough, but some encouragement from “Mr. I go to cardiac rehab 3x a week” husband, got me out of bed into my bathing suit and headed toward the health club.
From there we went to lunch, to the Texas State Fair (the nation’s largest), to a movie (Zombieland), then to dinner (Cibus for some wonderful seafood pasta and a great red wine), and finally home to watch a movie(W). I was totally worn out by the end of the day and let me assure you, walking around the fair in cool, fall weather was extremely painful (especially after an hour of aerobics that morning). My knees would hardly bend. I thought about taking the Simponi shot on Saturday after we got home, but held fast to my plan.
Sunday was another busy day on my feet. Grocery shopping for over an hour, then putting up groceries, making lunch, starting on the laundry that’s been piling up for weeks, and cooking for the coming week. Finally at 5:00, everything but a few loads of laundry were done. All the chopping, basting, stirring, and seasoning to make soup for dinner (acorn squash bisque with turkey Italian sausage, roasted garlic and cannelloni beans); roast chicken and southern braised green beans for Monday; and pasta sauce for later in the week — were all done and stashed in the fridge ready to be reheated and enjoyed.
So finally it was time for the shot. I’d been looking forward to it for about a week now. Well, not the shot, but the relief it brings. I really like the autoinject pen. Five seconds and its all done. To me it stings a bit, but I don’t do anything like use an ice pack before hand (like I did with Humira). If I did, it wouldn’t hurt at all. But it’s over so quickly that one “ouch” and it’s done. I do have a slight bruise around the injection site this morning, but other than that, no ill effects. And I can tell that it’s working by the way my knees felt coming up the stairs to the office this morning. I still have some stiffness, but the last shot took about 24 hours for everything to quit hurting, so I’m expecting about the same this time. And hopefully this shot will last the full four weeks. The next shot is the one I take before the London trip and I need it to be in full force and effect. Lots of walking and lots of steps in London.
Thanks for checking in. I’ll update how the Simponi is working over the next few days.
Ever have one of those days when you have a lot on your mind, but you just don’t know what to say? It’s one of those days. We’ve had some unpleasant news to share at my company today, and being part of the senior management team, I’ve known about it for the last week or 10 days. Today the rest of the company got the message, so on one hand, it’s been a stressful day. On the other hand, I’m glad the news was finally made public so all the calculating and whispered meetings taking place up to this point are at an end.
Which has nothing to do with RA. Which is also a good thing. Most of the time, my life doesn’t revolve around the disease. It will, however, this weekend, because Sunday night is my next Simponi injection.
I have to say that I’m pleasantly surprised at how much good Simponi has done for me. Yes, this past injection started wearing off at week 3. But I haven’t gotten to the “I hurt all over and I can’t stand it” phase that I was in when I was taking the Humira that wasn’t working. I’ve been popping Tylenol this week, but not a large amount.
I guess sometimes we have to take relief where we find it. Sometimes it’s mental, sometimes it’s physical relief of pain or other symptoms.
Here’s hoping you find some relief in your weekend. I’ll check back in Monday after Simponi shot #3 and report.
I attended my first (hopefully of many) water aerobic classes last night. Like many people with RA, I used to be more physically active than I am today. RA isn’t the reason I quit exercising, it’s just the latest of many factors — or should I say “excuses” — that have made me more sedentary.
I had done some water aerobics classes in the past, so there weren’t any real surprises. The instructor was good, the class size wasn’t too large, and in all it was a good experience. There were, however, things that I couldn’t do. I can’t cross my legs because of my artificial hip, and I can’t yet raise my left arm over my head because of the shoulder surgery. I also had problems doing those exercises that put too much stress on my shoulder like treading water or using the water dumbbells. However, I did work hard and adapted the steps to what I could do.
We all know that the application of ice/cold is good for inflammation (although cold weather makes us feel worse!). So I don’t know whether it was the hour-long immersion in the cool pool water or whether it was really exercising long-dormant muscles and joints, but once the class was over, I felt better than I had in well over a year. I felt loose, limber and amazingly pain free. Assuming that I would “pay the piper” this morning with tight, sore muscles, I was even more surprised how much better I felt this morning than I did yesterday. Even my knees didn’t complain as much going up the stairs.
So did I have a perfect workout? No. But I did do what I could and was amazed at the difference it made.
I believe that all of us, especially those with RA, have to learn that lesson. Doing something is better than doing nothing. And doing what you can — even if it’s not perfect — to make your life/health/relationships better pays dividends that we can only imagine.
So, today, do one thing good for your health, do one thing to make someone else smile, do one thing (like paying off a bill or saving a little extra) to make your life a little more secure, and see how much better life is tomorrow.
Then do it again tomorrow.
That’s all for now. Thanks for checking in.
Okay, so we get back from Las Vegas on Sunday evening, and my husband who goes to cardiac rehab 2-3 times a week comes home Monday night after rehab and says he lost two pounds while in Vegas. NOBODY loses weight in Vegas. Sorry, it just doesn’t happen. My husband, who is not a boastful guy, couldn’t help but be pleased with himself so I heard about the missing two pounds multiple, several, more times than I wanted to last night.
I was good on the diet yesterday, but didn’t really exercise. I did stretch my shoulder like I’m supposed to, which is a start. I also am getting back into my water-drinking habit and have substituted a can of V-8 juice for my regular handful of crackers for my mid-morning snack. So at least I’m getting more vegetables and fewer calories.
Today I packed my workout bag with my swimsuit. I have great intentions of going to the health club after work and walking in the water and am looking forward to the sauna and hot tub to help relieve some of these aches and pains. However, we’re supposed to have horrendous thunderstorms about 5:00, so the inclination is just to head home. If I do that I promise I’ll get on the treadmill — even if my knees do hurt.
This Friday is four weeks since my last Simponi shot, so I’m “eligible” to take it. However, I think I’m going to push it to the full 30 days — Monday the 12th, then next month take it on Wednesday the 11th. I used to take my Humira shots on Wednesdays and I want to migrate my Simponi shots to Wednesdays as well. Why? Because I don’t normally travel on Wednesdays and since both Humira and Simponi need to be refrigerated, it makes my life easier. And if for some reason I am traveling on Wednesday, it’s doubtful that I’ll be traveling both the day before and the day after, so I can slide the shot one day or the other and not have to deal with it.
The issue is, I’d really like to take the shot TODAY. If this injection delivers the relief of symptoms that the first two injections did, then I am more than ready.
So the diet and exercise goals are good, let’s see if I can keep up with them. Thanks for your encouragement and for checking in.
I was in Las Vegas this weekend and two conferences were being held simultaneously at the hotel. The first was Photoshop World which attracts a wide range of computer, photographic, and creative types of all ages and backgrounds. The second was labeled as The World’s Largest Tattoo Show. While there are a lot of ages and backgrounds into tattoos today, judging by the participants, you really had to be into the tattoo lifestyle to attend the three-day event. Not only were the tattoos interesting, the various outfits worn by the participants to show off their body art was particularly … revealing. One of the most interesting parts was when the photographers from the Photoshop conference got together with the folks from the tattoo show in the hallways. Spontaneous photo shoots broke out. People watching at its most entertaining.
I have to say I didn’t take very good care of myself over the weekend. My Simponi has been wearing off and while I can tell there are some benefits, it wears off more each day. I was really fatigued by the time I got to Las Vegas on Friday (and the two-hour time difference doesn’t help the body clock). Add to that all the walking, exorbitant food and perhaps more alcohol than is wise, and none of that is good for the RA. I did sit and play some video poker, but then my wrist and shoulder complained. The best part was the massage on Saturday afternoon along with the steam and whirlpool treatments that helped counteract the bad things I was doing to myself. My wrist is still complaining this morning (although I won at video poker), and doesn’t want to go back to work driving my computer mouse.
So now I’m back and focused on being better to me. Our trip to London is 7 weeks from tomorrow — and there’s lots of walking and cold, damp weather involved, so I’m officially “in training”. More exercise, better food, good sleep and less self-medication of the “on the rocks” variety. The next Simponi shot is coming soon as well, so that will make me feel better.
One of the concessions I did make to my RA and my healing shoulder was to check my bag on the airline. I have two general rules about travel: (1) no checked bags; and (2) don’t get arrested. But given that I was traveling on my own going to Las Vegas and wouldn’t necessarily have help getting my bag in the overhead, I opted just to check it. I’ve gotten used to the routine of having to get scanned every time I go through airport security, but the checking of the bag is a pretty monumental shift in policy for me. I see more of these concessions in the future and am already plotting knee-friendly, stair-avoiding routes to and from Heathrow for our upcoming London adventure. I love London, but they have no such thing as ADA in Europe and the city is built for people who are both mobile and fleet of foot. Watching Londoners flit up and down impossibly high “Tube” escalators is more entertaining and has more footwork than a full evening of River Dance. Not for the faint of heart or the RA challenged knees, for sure.
I’ll keep you posted on how the training goes.
Thanks for checking in.
Of course the day I can lolligag around in bed is the day my eyes pop open at 4:30. The last day I had off was Labor Day, 24 days ago, and most of the work days between then and now have been 10-14 hours long. I have been counting the hours until I could just be lazy today, and I wake up long before the sun decided to peek over the horizon. It’s just as well, as my husband had to get up at 5:00 to catch a flight, so I would have been awake anyway. I didn’t actually GET out of bed until about 7:30, so I did get a chance to relax and enjoy not having to fight the morning commute. Tomorrow afternoon I get to catch my own flight and join hubby in Las Vegas for a much needed long weekend of R&R.
The first thing I realized when I woke up this morning was how badly my knees hurt. My knees are my RA barometer. I keep track of how well my RA drugs are working by how hard it is for me to get up and down stairs. I’ve been doing very well since I switched to Simponi in August. I had been in pretty severe pain the evening I took the first shot and the next morning the most amazing thing had happened: nothing hurt. It was the first time in a long time that had happened and it lasted for a whole week. I took my second Simponi shot on September 11, and it took 24 hours for everything to completely stop hurting, but it’s lasted 19 days. Yesterday afternoon as I took the stairs down from my second-floor office to go home, I noticed some knee twinges that hadn’t been there when I climbed the stairs on my way in to work in the morning. Sure enough, this morning my knees woke me up, and my hands were stiff, and my ankles hurt, and even my elbows which don’t normally complain, joined the chorus.
However, the fact that I got almost two MORE weeks of relief from this shot (versus the first one) gives me hope that my next shot will potentially last the entire month. I suspect that like its cousin Humira, it takes a couple of months for the full effect of the drug to kick in.
So here I am with a full day of “me” time. No work, no husband, just a full day to myself. That doesn’t happen very often. I have errands to run this morning, but this afternoon we’re supposed to get some of those wonderful and terrible Texas thunderstorms roll through. So once I get my “to do” list done, I am going to do absolutely nothing except read a good book and enjoy the storm. (Okay, I have one conference call this afternoon, but that’s all.)
I just wish my Simponi had lasted one more day. Texas thunderstorms and arthritic joints don’t play well together.
Thanks for checking in.
There is an old saying that goes something like, “If the only tool you have is a hammer, then every problem is a nail.”
I have a good friend who, among her other amazing qualities, is extremely knowledgeable about hormones and has published a book that empowers women going through menopause toward self evaluation and self help (What About Menopause Don’t You Understand? http://hormoneguru.com/). In the past year that I have had both my hip and my shoulder replaced, she lost her husband to colon cancer and became a breast cancer survivor, so she has had more than a crash course. It is not uncommon that our conversations drift into medical discussions. When I comment on a new symptom or ache, she offers insight into which conditions might be causing it and which hormones or natural supplements might ease the situation.
While I certainly respect her knowledge, and I love her for caring about me, I know that not all things are hormone related, just like I know that not every one of my aches and pains is related to RA.
Or are they?
That’s one of the toughest things about this condition for me to deal with. It would be easy to define myself via RA, to scrutinize each new creaking joint and ache through the lens of the disease. However, I suspect the stiff, aching neck and shoulders has more to do with working 14-hour days on a computer than a sudden progression of RA. On the other hand, I also don’t doubt that working long hours, hunched over a keyboard aggravates already inflamed tissues, perhaps giving the disease an edge it wouldn’t have if I had a different life.
I recently read another blog where the author took umbrage about people flippantly saying their aches and pains were arthritis when those of us who truly have the disease understand the difference. On the other hand, how many of us had years of unresolved aches and pains before the disease manifested itself enough to be diagnosed? Who is to say that those minor aches and pains suffered by others aren’t the harbinger of something more insidious?
But back to the point. Having a diagnosis puts a different perspective on your life. Whether you want to or not, you evaluate any change in your joints as a person with RA, which is much different from a person without it. I have to decide whether the pain in my feet today is the onset of a flare, a result of the changing weather, or perhaps wearing a different pair of shoes yesterday. People who don’t have RA don’t think about those things. They have tools other than hammers and look at life through different-colored lenses.
Today this project is over. I’ve already worked 30 hours this week and it’s only 7:30 am on Monday morning. I’ve also worked the last three weekends, so my stamina is about to give up. I don’t know whether it’s RA or just my age showing, but I finally went home from the office last night about 11:00 pm. Even a year or so ago, I would have pulled an all nighter (which some of my team did). However, my Celebrex, Evoxac (which I take for Sjrogren’s Syndrome), and husband were all home, so I slipped away in the night leaving others to burn the midnight oil. In apology, I did bring them breakfast when I came back in this morning at 7:00.
I don’t want to say that RA has become a more prominent part of my life. Just like my cleft chin, I know it’s there but I don’t necessarily pay attention to it. I have, however, become more a part of a community of people who are dealing with RA. For example, I start my morning reading the latest adventures of Rheumatoid Arthritis Guy (www.rheumatoidarthritisguy.com) and worry that he’s ill when the post isn’t up as early as normal. I’ve found that there are a lot of people who find an outlet in dealing with the rainbow of issues of RA by writing in blogs and sharing their experiences. Thanks to the marvels of modern cyberspace, we are able to connect. Sometimes this helps the writer, sometimes (like me and RA Guy), it helps the reader. In any case, it helps us know that we are not alone, that others are walking (or stumbling) in our footsteps, and we can learn from their experiences with the disease, the drugs, and even some of the weird things that you deal with.
I have to admit that I’ve been in denial on more than one occasion. Evidence of that was when I went off MTX after my hip replacement, with the result of having to have my shoulder replaced just a few months later. But I can’t help but think, as many of us do on our “good” days, that, “What if I really don’t have RA?” This is especially easy for me, because I have a sero-negative form of the disease which means there has been no positive clinical test that definitely diagnoses the disease. On the good days I wonder if I’m just feeling the effects of an older, stress-laden, less-active lifestyle and if a better diet and more excercise wouldn’t have the same effect without the side effects of powerful drugs. What if I’m paying all this money and flooding my system with potentially damaging potions when a swift kick in the behind to get me to the health club is all that’s really necessary.
And then there are the days when I count the minutes until my next Simponi injection.
And every day I count my blessings, my friends, my family, the health I do enjoy (most of the time). Overall I have a wonderful life . One of these days, my life may center around my disease. But that day is not today.
I actually think the Simponi is working. However badly I was feeling earlier has cleared up. I had been in Chicago for five days and had felt like I was coming down with something ever since I returned. I finally got over that and when I did, all my achy symptoms went with it. I still have some stiffness in my hands but the really painful knees are no where to be seen. I’m managing stairs quite nicely, thank you. Hopefully Simponi will work for me.
It is really weird though that every once in a while, quite out of the blue, one of my knees will just start hurting and throbbing. What’s weird is that it seems to happen when I’m home relaxing with my feet up. Go figure.
I really need my RA to stay in the background for a couple more days until I get this project out the door. I don’t have time to have a flare. I checked my calendar, and nope, nothing on the schedule.
I also haven’t had time to go back to physical therapy on my shoulder. I’m afraid I’m losing what small amount of progress we had made previously. Promise to myself: once this project gets out the door, I’ll do my stretching diligently (at least for a while).
This morning I got an [unpleasant] surprise. I ran across an article where a doctor was discussing the pros/cons of shoulder surgery, partial shoulder replacement, and total shoulder replacement. The doctor in the article indicated that someone with a total shoulder replacement [like yours truly] would be unable to lift more than 25 pounds with the affected arm for the rest of their life. No one told me that. I must remember to ask my surgeon when I see him again in December. My shoulder stays slightly sore most of the time — probably because I’m mistreating it. But sometimes even getting a hug or sleeping on my side will cause more pain than I think it should.
Overall, though, I’m doing better than I have in months. The Simponi is helping, the folic acid keeps me from being so fatigued and stressed, my hair’s grown out to where I actually look human again — all of those things are important for health and well being.
Thanks for checking in.