Was It Just A Remicade Dream?

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

waiting room chair

Or here?

infusion-chair

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.

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19 Comments

  1. Margaret says:

    RA is not an easy thing. While I have never had an infusion, I say pay the extra if you can afford it if it makes you feel better. We need these small things to get through all the bad things. Something that is supposed to make you feel better shouldn’t come with such a high physical cost. Don’t feel guilty for taking care of yourself.

  2. Chelsea says:

    I’ve heard more stories about bad experiences with IV infusions of the RA meds, so if I were you, I’d stick with getting them at the hospital. Sounds like you might need to switch RA docs.

  3. WarmSocks says:

    It’s good to hear that your most recent infusion went so well. Now you have something to compare. I haven’t ever had the infusions, but my impression was that patients aren’t supposed to be left alone.

    A letter to your doctor requesting a correction to your inaccurate medical record would hopefully get the problem with your meds list fixed.

    It would be great if you’re able to keep the good doctor, but go to the nicer infusion center. Keep us posted.

  4. Laurie says:

    I second what WarmSocks says. I don’t know how things work down there in the U.S., but is it not possible to keep the doctor but get the infusions at the hospital? And, since the doctor is so good, maybe you could talk to him about the problems at his office – maybe he’s not aware of some of them. Sometimes people in charge really don’t know what the people under them are up to if no-one says anything; they just assume everything’s fine…

    Anyway, glad you had a good experience this time out (and with chocolate to boot!!).

    :) Laurie

  5. Cathy says:

    I so hope the cost is not that huge and you can return. The hospital infusion sounds so personal and lovely. We need that, don’t we?

  6. Amanda says:

    This post is quite timely for me. I just found out that I’m going to be starting remicade. Thank you for detailing what to look out for.

    After reading your blog post twice, my reaction is that perhaps the doctor doesn’t know about the failures with his office staff. Perhaps you can have him read your blogpost? Frequently doctors go about their medical business and aren’t at all involved in the office side of things.

    At the very least I would mention to him that the difference in time alone made a huge difference in how you felt and that you no longer feel comfortable having the remicade given to you that quickly.

    Stick up for yourself!!!!

    Thanks for this post!

  7. I think it’s a more and more common problem that many of us have to make a decision on our healthcare based not what’s not best, but what is cost-effective. I agree with these posts, if you can keep your doctor and afford to go to the hospital, that would be the best. On top of all the benefits, the hospital is always open so you wouldn’t have scheduling problems.

    On a different note, I thought my first rheumatologist was terrific. He is a masterful clinician, but his office staff is terrible. After the second time I waited until after 4:00 for an 11:00 appointment, and dealt with rude staff, I decided I needed another option, even though I felt I had an incredible doctor. I love my new rheumatologist and her staff is great, caring, professional. I understand your attachment to the doctor, but sometimes you have to look at the overall quality of your care.

    But in the meantime, I hope, like others who have commented, that you can continue to return to the hospital. And if not, would you be more comfortable on the exam table where you can somewhat recline?

  8. admin says:

    Carla – the exam tables are tiny, and you can’t really lie down on them – or you can, but your legs are hanging off. I tried this once, and was even more uncomfortable than in the chair. I think there’s a way to extend the table, but the office is too small and they have a chair in the way that prevents it, with no good place to move it. Weird, I know. It’s a strange little office. The doctor says he is looking for a new space, but it’s been a long time now and it hasn’t happened yet.

    Thanks for the support, everyone. I’ll let you know what happens when I get the EOB! I am very curious to see what the cost difference is. I’m going to have a serious talk with my doctor at my next visit about the differences I saw, and see if there’s any way to make the experience at his office better. If there isn’t, and the cost difference is prohibitive, it may be time to look for another doctor, sad as it makes me. I’ve already talked to him about the other staff problems, especially the late billing, and he was already aware of them.

  9. Sunny says:

    My doctor has a large infusion room at his office that has about 10 recliner type chairs. There is a large screen TV playing, pillows, blankets, and nurses regularly take vitals. There are 2-3 nursing personnel manning a large desk in the room at all times. They mix and prep the infusion in a small workroom adjoining the infusion room, and do so after we arrive. I have noticed some reaction issues, including BP fluctuations, jitters, and chills, when the infusion went too quickly, but the nurses slowed it down as soon as I told them how I was feeling. It’s not quite as comfortable as the hospital experience you describe, but I’m very grateful not to have had your doc’s office infusion experience. He needs to read this post of yours…seriously! You shouldn’t feel at all guilty about taking your infusion with cancer patients. Remicade is a form of chemotherapy, even though the dosages are smaller than typical cancer chemo meds. Chemotherapy doses and meds vary depending upon type and severity of cancer as well, so don’t feel you are undeserving of a bit of pampering. Consider also that most chemo patients undergo this treatment for a few months, and are then free of it, while we may have to be taking these types of infusions for many years.

    Blessings from a fellow remicade sister.

  10. Kelli says:

    It’s so awful to think of you having to get infusions the way you described at your Dr.’s office. Makes me sad. If it brings any comfort and peace to have it done at the hospital–I say go for it. Comfort when dealing with pain is priceless, right?

    I’m a regular reader of your blog as of a couple months now. I have left a reply before under “Incredible Shrinking World” entry. I am a mother of four in my 30’s battling RA. I love your writing/storytelling. It has helped me put words to emotions for my husband and others. I have started a blog mainly for the therapy it brings. But I really hope to connect to others. If you ever want to stop by–I am at http://rheumforgod.wordpress.com/

    I look forward to your next post.

    Kelli

  11. admin says:

    It’s nice to “meet” you, Kelli! I’ve added your blog to the links on my home page, and I’m looking forward to reading more from you! It’s always great to meet other moms with RA. I have a hard enough time with one kid – four must be tough!

    I’m glad my blog has helped you, and hope you get a lot out of writing yours!

  12. admin says:

    Thanks for commenting, Sunny – it’s good to hear from other Remicade patients about their experiences. I’m starting to think that the situation at my doctor’s office is unusual, and not in a good way. Your description sounds more like how it should be.

  13. Kelli says:

    So great to meet another mama too. Four teaches me a lot everyday. : ) So sweet of you to add my blog. Thank you. I forgot to tell you that your music is beautiful and I love the poetry of it. I am also an artist–only my medium is drawing. May you continue to find joy and comfort in your music.

  14. PANDAN PUDDIN says:

    I was searching prednisone and found your blog. I recently stopped receiving remicade infusions for colitis because the last four times I had them I started having reactions. This was over a 8 hour infusion.

    Besides when hospitalized, all my infusions have been in an infusion clinic for my medical group. The first one I had a private room and bed but nurses came by at least hourly to check vitals. My other clinic was way better. They had remicade on site so the # of vials I received could be adjusted based on weight (especially after prednisone weight gain). I only had a recliner and tv, but the nurses were much better at IV lines and were always in the room monitoring us or moving blankets, unplugging us to go to the bathroom. It was hard being the patient in there the longest , and at 29 years old seeing all these older people in and out in couple hours. Be very careful about delaying infusions as i predict (from reading) that my reactions are related to time between doses. i am back on high dose prednisone and being reffered to a surgeon.

  15. oofer says:

    I just found this site. I am starting Remicade infusions next Tuesday, 8/17/10. I am a 62 year old disabled vet with Ankylosing Spondilitis and Crohn’s disease. I will be taking the infusions at the Portland VA hospital, though I live 180 miles away.

    I will report to their out-patient clinic. I will report how this all goes once it is done. I really wanted to just say Hi for now, and tell you how good it is to hear that things can go well with Remicade. I am a bit skeptical and even scared at this new turn in my treatment regime. This will be an interesting experience.

  16. Remicade Dream says:

    Oofer – good luck with your Remicade infusions! Please do let me know how it goes. It is certainly scary starting a treatment like Remicade – I remember that it was very hard for me emotionally in the beginning. It has taken me a long time to get to the right dose, but I’m happy to report that I seem to be doing really well since my latest increase. Haven’t had a chance to write about it yet, but I will soon.

  17. Liz says:

    I was just as shocked as your hospital nurse to hear the way your remicade was given in the Docs office. Remicade and other high risk infusions should be given in a place where there is backup should a reaction become serious. There must be a crash cart/emergency trolley and the ability to transfer you to a hospital ICU if needed. None of these infusions should be rushed. Please find a way to have your infusion at the hsopital. You should be comfortable, fed and watered, infusions at correct rate and have knowledgable people on hand should you need. Its really interesting to read your blog and see how your daily life pans out. thank you

  18. Mindy says:

    Thank you so much for sharing your experience with your infusions. I’m going to be starting my infusions this week, and you helped me have a much better understanding of what to expect and I really can’t thank you enough! I wish you well on your journey!

  19. Ellen says:

    Just reading over the blog. I have had 3 treatments so far and my experience has been wonderful. The nurses are so nice and the warm blankets are really special

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