Infusion Time: More Than Needles

I’ve mentioned previously that my wife, Lisa, takes Rituxan for her RA. Last month Lisa received the first part of her bi-annual Rituxan infusion. Today, I’ll share a little about our experience with the infusion process from my perspective.

Scheduling the appointments

After making minor adjustments over the years, Lisa and her rheumatologist have settled on six month intervals between each infusion round. As the time for the next round approached, Lisa scheduled a check-up appointment with her rheumatologist. Sometimes I go with Lisa to these appointments, but more often she takes herself when things are going well.

After confirming that Lisa had no significant changes in her health status, she began to target potential dates – in late May and early June – to receive her two-dose infusions. Spring is a busy time of year for Lisa and this year was no different, so settling on the dates was a little tricky, but Lisa managed to schedule infusions around an out-of-town vacation, a panel presentation and interview at a big conference, and conference calls which ultimately took place directly from the comfort of her infusion chair.

Ensuring eligibility for financial assistance

But first – one important due diligence step still remained before Lisa completely finalized the treatment dates. As Lisa and I learned the hard way last year, it is necessary to make sure that you are enrolled and still qualify for financial assistance from the pharmaceutical manufacturer. After last year’s debacle, she and I periodically reviewed the steps necessary to keep her qualified and we were thus pretty certain she was still in good standing. Lisa contacted the manufacturer in late April to confirm that her account was all set. A phone call to the pharmaceutical company verified that that her assistance would be in order. Financial worries were alleviated.

Infusion day

With the preliminary work out of the way, it became only a matter of showing up for the actual treatment. We are fortunate to have an infusion center about 20 minutes away from our house. While the clinic is nearby, I’ve seen how the medicine can make Lisa drowsy, so I will drive her to and from the clinic. I don’t want her on the roads alone. As many readers know, Rituxan infusions can be rather lengthy; in Lisa’s case about 6-8 hours with the slow drip to avoid reactions and variable time it takes to get an IV started.

We schedule early appointments and are out the door by 7:00 AM each day. Lisa calls after about 6 hours to let me know she’s almost done which gives me enough lead time to wrap up work at home and arrive at the clinic just before she finishes to pick her up. I enjoy getting to interact with the infusion nurses and see that Lisa is in good hands. Starting the treatment early works well for Lisa, as she is able to spend the afternoon resting up afterwards and still conduct music lessons in the evening.

Feeling blessed

With several years of experience under our belts, Lisa’s bi-annual infusion process works quite smoothly for both of us. We realize that we are very fortunate to have such a positive experience for a variety of reasons. Lisa has responded well to the medication; she has great insurance coverage and receives excellent financial assistance from the manufacturer of her medication; we do not have to travel far to access treatment; and she receives a high quality of care from her rheumatologist and the professional staff at the infusion center.

My wish is that all patient experiences could be equally positive, but I know this is not always true. So, in closing, I am curious to learn about the experiences of others. Readers, what have been your experiences with accessing your RA treatment?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (11)
  • Carla Kienast
    3 years ago

    Hi Rob: I’m sorry I missed this when it was published earlier in the year. While infusion schedules vary from biologic to biologic, you make great points that apply globally. I’m currently doing Actemra via infusion (every four weeks), but we may need to switch to Rituxan before too much longer. Thanks for the great tips and insight.

  • Rob author
    3 years ago

    Thanks, Carla! Some of the tips are fairly simple, but sometimes life gets pretty hectic and even simple steps can get lost in the shuffle when we find ourselves in a rush. I imagine some of the tips are also more beneficial when one has to travel farther for their infusion and/or their treatment plan calls for more frequent infusions than my wife’s does.

  • Marilyn Swallow
    3 years ago

    Thanks for sharing your wife’s story. I have a very similar treatment plan going on and can relate:) We had the problem with the “Checking on Co pay assistance first”! We won’t do that again!
    Rituxan has been wonderful for me.
    Thanks again for sharing:)

  • Rob author
    3 years ago

    Hi Marilyn,

    Thanks so much for your comment! And apologies for not responding sooner. I’m glad you enjoyed this article and intrigued to hear that you also experienced some bumps with your Co pay assistance. Our experience turned out just fine, but we were quite concerned for a time. Hope yours worked out well, too.

  • Rob author
    4 years ago

    Thanks to everyone for the comments.

    Rhonda – I do hope your daughter’s next infusion goes more smoothly. I would think that after the first infusion your treatment center will have a better handle on how to properly administer the rituximab on the next go-round.

    Patty – I don’t think my wife has taken Enbrel, but I will ask her to leave a comment here so she can confirm. She can also definitely help you with your question regarding injections vs. infusions. What I can tell you about two procedures is that injections are usually administered by the patient (as you do with your Enbrel), while an infusion is an IV drip process that must be conducted by a treatment center.

    Connie – I am sorry to hear about the allergic reaction to your Remicade. I am also following responses to my article on Facebook and many people have commented that they too have had allergic reactions to their medication. I do hope your doctor is able to work with you to find a suitable replacement for the Remicade. Please let us know how things turn out.

  • Connie Goodner
    4 years ago

    I have taken Remicade by infusion for ten years with good results. However after taking the last one I had an allergic reaction to it. Now I have to start out all over again.

  • Lisa Emrich
    4 years ago

    Hi Connie,

    Sorry to hear that Remicade may not be a good option for you anymore. Good luck with choosing another treatment!

    Lisa

  • Patty Palumbo
    4 years ago

    Rob, Thank you for sharing. Did you wife ever try Enbrel? I currently inject enbrel one day a week. I’m afraid to change meds but it sounds like your wife is having a lot of success with the infusions. Do you know the differences from the injections vs the infusion? Any information is truly appreciated. THanks

  • Lisa Emrich
    4 years ago

    Hi Patty,

    I’ve never tried Enbrel. In fact, I haven’t tried any of the anti-TNF drugs for RA because I also have multiple sclerosis (a contraindication). For RA, I’ve only used methotrexate, sulfasalazine, Rituxan, and steroid injections.

    With the drugs for RA that are now available, the difference between infusions and injections isn’t immediately easy to define. What makes the drugs different is how they work, or rather, what aspect of the immune system they target.

    You can read more about different treatments here: http://rheumatoidarthritis.net/treatment/drugs-and-prescription-medications-for-ra/

    Does that help answer your question?

    Lisa

  • rhonda
    4 years ago

    Hi Rob thanks for sharing your infusion story. I am new to infusions. I have ra and am currently taking humira injections weekly. However My 16yr old daughter will recieve her second rituximab infusion Thursday. She has an autoimmune kidney disease that has not responded to multiple drugs. She had her first infusion 4 weeks ago. It was a little scary to watch. She handled the med pretty well at first but upon increasing the infusion rate her bp dropped very low and said she felt like her throat was closing. They stopped and restarted at the lowest rate. It took about 8 hrs. I am curious if They will do the same slow rate this time. I am glad to here this med is helping your wife. I am hopeful it will do the same for my daughter. Best wishes.

  • Lisa Emrich
    4 years ago

    Hi Rhonda,
    Today must be infusion day for your daughter. I hope that it goes well.

    I have also experienced the infusion reactions (low blood pressure, itchiness, swelling, coughing, flushing, etc) and they gave me extra steroids, extra benadryl, and slowed the infusion rate down. In following infusions, they tried the standard protocol again, but I would still have a reaction.

    Now, we have a different routine where I get extra pre-meds to begin with and we keep the drip rate slow throughout the entire infusion. The time actually goes more quickly this way because we aren’t stopping the infusion to treat a reaction and wait to begin again. But the entire experience will still take around 7 hours.

    I hope that everything goes well for your daughter and that Rituxan works for her. If it didn’t work so well for me, I might have moved on to something else; but it’s because it’s so effective that I’ve stuck with it and learned how to avoid and manage the side-effects.

    Take care,
    Lisa

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