Posts Tagged ‘Remicade’

Was It Just A Remicade Dream?

Friday, April 30th, 2010

Where would you rather sit if you were having a Remicade infusion?  Here:

waiting room chair

Or here?


Yeah, me too.

I belong to a couple of online RA discussion boards.  Every once in awhile, a frightened Remicade newbie will post a question about the infusion process.  The community generally jumps in with reassuring responses and descriptions of how the whole thing works, describing friendly infusion nurses, recliners, TVs, even snacks.  And I sit there reading them, thinking, “Really?  It doesn’t go that way for me…”

Yesterday, I got to find out how the other half lives.  See, my infusions are normally done in my rheumatologist’s office – a nurse comes in on Thursdays to do them.  But about two weeks ago, I got a call saying that the nurse wouldn’t be available on my scheduled week, and could I move it a week earlier or later?  The other dates, unfortunately, didn’t work for me.  I’ve also been pretty unhappy with my infusion experiences, and have been curious about how other people do it.  So I asked if there was someplace else I could go, and the medical assistant reluctantly said that I could have it done at the hospital.  She did warn me that it would be more expensive, but I thought it would be worthwhile just to see what it was like.

And boy, was it different. 

When I get Remicade at my doctor’s office, this is the drill:

I am shown to one of the regular examining rooms, which are really tiny, and I sit in a wooden chair very much like the one in the first picture except older and shabbier.  Recently, someone moved the furniture around in the examining rooms, so the chair now sits awkwardly behind the open door, where the door bumps my chair if anyone tries to open it wider.  The nurse comes in and starts my IV.  Most of the time, he doesn’t take my vitals, and he never asks me any questions.  Then he hooks up the Remicade bag and leaves.  I generally don’t see him or anyone else again.  I sit and read a book or listen to music on my iPod.  At a certain point, I feel pain in my arm and look up to see that the IV has run completely dry.  So I get up, drag my pole out into the hall, and flag someone down to try to find the nurse.  If he’s not in the middle of something (which he usually is), he comes in, flushes the line with saline, and bandages me up.  Otherwise I wait awhile, then go back into the hall to repeat my request. 

Since he has so many infusion patients in one day and also has another job to get to after he’s done, the infusions have been getting faster and faster – they now take less than an hour and a half.  I’ve told him before that fast infusions make me feel awful, but he claims that the Remicade drug rep told him that speed isn’t an issue, and that some people just react that way to the drug.  (Funny, since I only started reacting badly when he started speeding up – also funny, since other people on the boards say they have the same problem.)  After my infusion, I go down to the car where my husband is waiting.  I am always depressed and shivering and my hands are icy; my husband has to turn the heat on in the car, even if it’s hot out.  I feel like I’ve been hit by a truck.  We go home, where I collapse and sleep for hours.  Sometimes I wake up the next day still feeling awful.

 Now, here’s how yesterday went:

I got to the hospital and went up to the infusion room, which turned out to be on the oncology floor.  (I do have to admit that seeing “CANCER CENTER” on the wall when I got out of the elevator did bum me out a bit… the one negative in all of this.)  I walked into the room and saw about four or five blue recliners and two other patients, who were there for chemo.  The nurse, who was incredibly friendly, weighed me and took my blood pressure and temperature.  Then she asked me a whole bunch of questions about how I was feeling and went over my chart.  She had a list of my medications which my rheumatologist’s office had faxed over; about half of them were wrong, and she made the appropriate corrections.  (Okay, this worries me – time to have a talk with them.)  I found an empty recliner, which had a pillow waiting for me and a big table next to it for my things.  I told her that my infusions usually take about an hour and a half but that I don’t do well at that speed.  She reacted with horror and said that the Remicade guidelines are pretty clear on the importance of going slowly to minimize the chance of infusion reactions – she usually takes about three hours.  She started my IV and let me get good and hydrated before hooking up the Remicade bag.

At all times, there was at least one nurse in the room, and all of the nurses I saw were friendly and kind.  They came right over to each of us several times to ask how we were feeling.  They ordered lunch for us from the hospital cafeteria.  Several times, they passed out chocolate, and also offered to go get sodas if we wanted them.  The recliner was really comfortable.  There was a TV, but I didn’t watch it.  Instead, I had a great conversation with the 87-year-old cancer patient in the recliner next to mine – we turned out to share a common interest in opera.  My IV didn’t run dry – the nurse came over before the Remicade bag was completely empty and flushed the line.  I never had to go looking for anyone. 

When I came downstairs and got in the car, my husband remarked on how different I looked.  I was warm and happy and felt cared for.  (The chocolate zinging through my system didn’t hurt either!)  My hands weren’t icy.  I went home and felt mildly tired, not exhausted.  I didn’t need to nap.

Now I don’t know what to do.  I love my rheumatologist; he is smart, kind, spends lots of time with me, takes a team approach to my care instead of dictating to me.  He seems to know everything – I will come to him with what seems like a vague symptom, and he knows immediately which tests to order.  He has come up with some things that seem like they’re completely out of left field, and always turns out to be right.  He is, quite simply, the best doctor I’ve ever had.

But there are problems with his office, more than just my issues with the infusion process.  Twice now, I’ve gone to my infusions expecting my dosage to be raised, and learned that someone forgot to call the insurance to authorize the increase – so I had to stay at the lower dose.  The medications listed on my chart are usually wrong – I’ve called to have a prescription filled and found that someone forgot to note my new medication in my chart, resulting in a delay.  Medications have also been called in at wrong doses or in wrong amounts.  The billing office is more than six months behind – a big problem, since my FSA has deadlines.

I was pathetically grateful for the way I was treated at my infusion yesterday – I was ready to get down and kiss the nurses’ feet.  I almost felt guilty for getting such good care, as if I somehow don’t deserve it because I am not a cancer patient.  I question whether it was worth it, given the difference in cost – am I just being won over by chocolate and kindness?  (I don’t know exactly what the cost difference will be – I’ll know when I get the EOB – but our PPO only pays 90% of costs, so it’s bound to be expensive.)  My husband points out that we always meet the out-of-pocket max on our insurance anyway, and what does it matter if we meet it a little sooner?  My mom points out that infusions are, when you really think about it, a pretty terrible thing to have to go through, and that the least they can do is make the experience as comfortable and pleasant for me as possible.  And what’s wrong with a little chocolate?

I have much to think about.


Tuesday, December 29th, 2009


 Buckle your seatbelts… this one will be part pity party, part confessional, part angry rant!

A few weeks ago, I set out with the intention of circling my wagons and writing a series of posts about the many things I do (or don’t do but would like to) to manage life with RA.  So I wrote a post about my organizational tools, and another post about exercise.  But then a funny thing happened.  Somehow, writing about these things (especially the organizational tools) made me depressed.  Maybe seeing it in print made me realize how big a part of my life this RA thing is, and how much I actually resent having to do all this stuff.  (Guess I’m still camping on the banks of that river in Egypt after all – when do I finally get out of that stage?)  And the sad thing is, these two posts were only the tip of the iceberg of the many, many things I need to do to stay well.

So I didn’t just fall off the wagon – I jumped off the wagon, then tipped it over and kicked it, hard.

This is a bit of an exaggeration, since I haven’t abandoned all of my healthy habits.  For example, I didn’t stop taking my pills – but I did get a little careless with the times at which I took them and with the steps I usually take to protect my stomach.  And I went faithfully to my Remicade infusion last week – a really negative experience I’ll write about another time, since I think it set off this whole rebellious phase I’m in.  I’ve been keeping my promise to exercise more, and I’ve also been going to my physical therapy appointments.

But all sorts of other things, big and little, have fallen by the wayside.  I’ve been eating really badly.  I haven’t been keeping my health journal.  I’ve stopped using my neti pot – this was something I started doing to give myself a little extra protection from colds, flu, and allergens, and it really did seem to do the trick.  I’ve stopped putting Refresh PM gel in my eyes at night, which I am supposed to be doing for my Sjögren’s Syndrome.  I’ve stopped eating yogurt to protect my stomach from my meds and have abandoned my fiber supplements.  On my last methotrexate day, I neglected to drink extra water before, during, and after taking the pills, and was completely flattened by nausea, headache, and all sorts of ickiness; ruined the whole day.  And I know better by now.  There are other things too, but this gives you a general picture.

Yesterday was my wedding anniversary, and my husband and I had planned a one-night getaway (without our son) to a resort hotel and casino.  I wore a sexy skirt that was a bit too tight, and knee-high boots that used to be perfectly comfortable before RA.  Boy, did I get to see how things have changed.  I barely made it through dinner before we had to go back to the room so I could change – and what a relief it was to throw on jeans and my Dansko clogs!  But it also upset me a lot.  I remember the days when I could tolerate a slightly-uncomfortable-but-cute outfit.  After that, we went down to the casino and played slot machines and other games, went back to the restaurant for cheesecake, and generally had fun before collapsing in exhaustion around 3 AM.

Things came to a head this morning.  I woke up feeling like a bus had hit me.  Okay, we did stay up until 3 AM – but we also slept until 11!  Hardly a serious sleep deficit.  And the other sad thing was that I didn’t have a drop of alcohol all night.  We also stayed pretty sedentary for most of the night – didn’t go dancing, didn’t walk far, didn’t do anything more strenuous than pushing buttons on slot machines.  So this horrible, hungover feeling didn’t feel… earned. 

The worst, though, came at breakfast.  We went down to the restaurant around noon.  I usually take my pills at 10 AM, and I was really feeling it.  So we ordered our food, and then I decided – stupidly – that since the food would be coming in just a few minutes, I could go ahead and take my pills.  (This is a lesson I thought I had learned early on – I absolutely have to eat before taking the pills.  I guess maybe the lesson needed repeating.)  Well, the food came pretty quickly, but the pills beat it to my stomach, and I started feeling incredibly nauseated, dizzy, and generally awful.  I had ordered French toast, which looked wonderful, but I could barely get the fork to my mouth.  I forced myself to eat some of it and got a glass of milk into my stomach, knowing that it would help, but had a truly miserable half hour before it worked.  And now it’s night, and I’m STILL not feeling well.

Now, this is where the angry rant comes in.  IT ISN’T FAIR.  My “wild night out” was incredibly tame to have caused such suffering.  My husband had the same night I did and feels perfectly fine.  Friends of mine can stay out all night drinking, get hardly any sleep, and yes, they feel crappy the next day – but then it’s gone.  If past experiences are any indication, I will be paying for this for days. 

I just want some NORMAL LIFE.  I want to be able to overindulge at Christmas.  I don’t want to have to do a million little stupid things every day just to keep this body working.  I want to be able to have the occasional night out without so much suffering.  I want to be able to drink alcohol.  I want to tire myself out running around shopping, going to parties, doing all those fun holiday things and just have it be NORMAL TIRED, not bone-crushing pain.  I actually did very little running around this year, and still paid for every minute of it.

I really thought I had made peace with my trade-offs.  I knew that because of the prednisone I am taking, going off my diet for even a short time would have much bigger consequences than it normally would for me.  I had decided that I was okay with gaining extra pounds, and was willing to work hard to take them off when the holidays were over.  I knew that every event I chose to attend meant at least a day of recovery.  But somewhere along the line, I stopped being okay with these things.  I am NOT okay.  I am ANGRY.

 I think this happens to most people with RA once in awhile.  We just get angry, and tired of the whole thing, and start pushing at the boundaries to see where they are.  Some people go farther than I did and just stop taking their meds.  (I’m not talking here about people who choose not to take meds because they want to treat their RA naturally – that’s a whole different thing, and a choice I respect.)  Some people do things like continuing to drink alcohol regularly even though they are on methotrexate or have liver conditions.  My forms of rebellion are smaller than these, and this is why it upsets me so much that they have had such a huge effect.  I NEED all of these little maintenance things, and it really pisses me off.

Anger – another one of the stages of grief.  This is not the first time I have visited this stage, and it probably won’t be the last.  I am tempted to censor this blog entry.  It’s not positive, it’s not proactive, and it doesn’t put a happy face on RA, or make me look particularly strong in my coping.  Anger isn’t pretty or easy.  It is where I am right now, though.  And I did promise that next time I had a pity party, I would invite you!

So here I am, good and angry.  Here I am, paying for every moment of fun I’ve had over the holidays, tallying it up and realizing that it’s such a pitifully small amount of fun for so much angst.  RA SUCKS.  It just does.


I am still trying to decide what to do about my wagon train.  It has become clear to me that I have to resume my healthy habits.  They were doing more for me than I thought they were.  Maybe I was just hoping they weren’t necessary.  I don’t know if writing about them will just set me off again, or if it will be good for me.  Maybe both?  Maybe this angry phase is necessary to move out of the denial I keep thinking I’m not in.  (Denying my denial?)  Maybe I need to stay with it, move through it.  Maybe it can unblock me, get me writing music again, get me feeling things I haven’t been letting myself feel.  I also know that when I’m in a better place emotionally, I realize that I’m lucky that there are things I can do that actually make some difference in how I feel.  So maybe I will resume writing about the wagon train.

Just not tonight.

Seeing Clearly

Wednesday, October 7th, 2009


I had my Remicade infusion on Thursday morning.  Because of my recent long flare, my rheumatologist decided to increase my dosage by one vial, and also to move my infusions from every 8 weeks to every 6 weeks.  We’re hoping that this will do the trick; otherwise, we may have to think about a change of meds.

On Friday morning I woke up.  I lay in bed for awhile, not moving, feeling cautious.  How was I feeling?  What would happen when I started to move, tried to walk?  Then I got out of bed.

The sun was shining.  The birds were singing.  I half-expected small woodland creatures to come to my window. 

There was NO PAIN.

The absence of pain is a truly extraordinary thing.  It’s like waking up from a long sleep (hence the above picture of Sleeping Beauty, for those who didn’t recognize her).  On a day-to-day basis, I don’t always notice the pain – I have learned to block out large portions of it, and it manifests instead as fatigue, or brain fog.  But when it is taken away, I can see clearly just how much pain there actually was. 

The rest of the weekend didn’t go quite as well – on Friday night, my toddler got the croup, beginning a period of several sleepless nights for everyone in the house.  When I found myself dead exhausted on Saturday, my first (illogical) thought was, “Oh no!  Maybe the Remicade didn’t work!”  Then I realized this extraordinary fact:  It’s possible for me to feel crummy for reasons that have NOTHING TO DO WITH RA.  Normal things, like not getting enough sleep, or taking care of a sick toddler, or, later, catching his virus myself.  (Carla, from the RA blog “Carla’s Corner”, writes about this very issue here – what perfect timing for me!)  And it sounds strange, but this makes me happy.  On Monday I went to work, feeling completely worn out from my weekend – but then I walked from the parking lot to my building, and realized that my body felt light and easy, with no pain in my knees or feet.  This walk is usually difficult for me – in fact, it was on this walk that I first noticed the painful feet that were the first sign of my yet-undiagnosed RA. 

So now I am sick, but still rejoicing in my lack of pain!  I hope I’ll get over this little virus soon enough to REALLY enjoy it.

And since this is a musical blog, here’s a song (not one of mine) to mark the occasion!

Remicade Day

Thursday, October 1st, 2009

You know, most of the time these days I pretty much take my Remicade infusions in stride.  But once in awhile, in the middle of an infusion, I’ll look down at my arm, then up at the bag on the pole, and think, “This really sucks.”

Remicade Dream

Sunday, September 20th, 2009

I’ve been thinking a lot about the purpose of this blog. When I started it, I described it as “a musician’s life with Rheumatoid Arthritis.” Recently, though, there’s been a whole lot of RA and no music to speak of. Unfortunately, this is a pretty accurate picture of how life has been going lately.

Annoyed by this, I spent some time this week at the keyboard, working on the rewrite of my “Remicade Dream” song. (To read a little more about the original song, or if you don’t know what Remicade is, go to the Why “Remicade Dream”? page on this blog.) Although the song is about the experience of getting a Remicade infusion, it was originally written one night while I was feeling particularly sick after taking methotrexate. It had a trippy, woozy quality to it that I liked, but seemed to be missing something. So this week I played around with some more instruments and different sounds, and I wrote a whole new middle section.

This song represents a complete departure from the simple, acoustic style of “Don’t Let Me”. On the whole, I think I prefer the “Don’t Let Me” writing style, but I enjoyed working on this one. It was a chance to play with some new toys, experiment with different layers of sound, and break out musically. Since I’m still figuring out who I am as a songwriter, this is all good for me. Also, the trippy, effects-heavy style seems like a more accurate picture of my Remicade experiences – partly since I always premedicate with Zyrtec, which makes me very spacy, and partly because the whole experience is so surreal to begin with.

As a side note – my husband always drives me to my Remicade appointments and then takes our son to the park. (He stayed with me the first time because I was nervous, but I’m used to it now.) The first time we did this, he told me, “Text me when your bag’s getting low.” So I texted him the following: “Mah bag’s gettin’ low!” This has now become a catchphrase in our family – if I’m feeling particularly bad or low-energy, I tell him mah bag’s gettin’ low. So naturally, I had to work this concept into the song somewhere…

I’ve also created a new page – “The Songs”, a place where you can go to hear all of the songs on this blog without having to search through the posts.

So here is the new version of “Remicade Dream” – hope you enjoy it! It’s best listened to with headphones to get all of the strange effects.

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