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The Last Days

With a title like “The Last Days” one might wonder if I’m referring to something as monumental as the last days of life or the last days before the apocalypse. No, I’m not talking about something as sinister as mortality or zombies taking over the earth. However, I am talking about something that’s serious to me, the last days before my monthly infusion.

My monthly infusion

I take an IV biologic, Orencia, used to treat rheumatoid arthritis (RA). Once every four weeks I go to the infusion center in my rheumatologist’s office and am hooked up to an IV to receive the medication intravenously. While the needle pokes are not pleasant, for the most part I am grateful for the process. I’m able to receive the infusion in town (in past years I used to drive an hour each way for my infusions), it only takes 30 minutes for the bag to empty into my veins, I have health insurance that covers the medicine, and, most importantly, it effectively decreases my disease activity.

When people hear that I have to get an IV every month, they often think that sounds awful. Obviously having a condition that requires intravenous medication is indeed awful, but it is not the IV that is dreadful. While having a needle inserted into my vein is not my idea of a good time (especially if the nurse can’t get it on the first stick), it’s actually the days right before my infusion that I dread, rather than the infusion itself.

When effects of the medication start wearing off

That’s because this medication, which remains in my body for weeks as it combats my misguided immune system, starts to wear off toward the end of the 28-day period between infusions. Often by day 24 or 25 I feel like I’m starting to flare. Movements that at times are pain-free or mildly uncomfortable become onerous. The puffiness of inflammation becomes visible. The fatigue sets in, acting like a thick cushion of water I must push myself through to accomplish any task.

Therefore, when I’m feeling these symptoms and check the calendar to find that I’m approaching my next IV treatment, I don’t dread it at all. Rather, my overall feeling is, “I just have to make it to infusion day.”

Over the 17 years that I’ve been diagnosed with this disease, I’ve had several loved ones suggest that I go off of RA drugs. They make all kinds of suggestions about the various diets and alternative treatments that might “fix” me, and state their concern about the side effects of the drugs. I too have concerns about the negative impact of RA medications on my body, especially its suppressed ability to fight infections. My brain is ever weighing the pros against the cons. However, I’ve tried several diets and alternative treatments, and so far have not found anything that reduces my symptoms as effectively as Orencia does.

The immunosuppresant tightrope

At my last rheumatologist appointment, we once again discussed the balance of having an immune system that is weak enough to stop attacking my body but strong enough to fight infection. As he considered whether to alter my medication regimen, he asked if I notice an increase of symptoms before my infusions. When I said I did, he asked how many days before my infusions do I notice the symptoms and whether this happens every month. When I replied that most months I start seeing an increase in symptoms three to four days before my infusion, he said that made him nervous to change my regimen.

A couple of weeks later I was in the thick of those “last days” before the infusion, and I had to agree that I am not ready to change something that is working. This immunosuppressant certainly comes with complications, but these remain outweighed by the positive impact Orencia has on my disease activity. Those last days before each infusion serve to remind me how I will feel without the medication, and how grateful I am that it’s an option.

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

  • Carla Kienast
    2 years ago

    Wow, Tamara: You have really described how I feel (and I’m sure a lot of other people)! I start the infusion countdown about a week ahead. I’ve been on several different biologics and one of the first signs that my treatment plan is starting to be less effective is that it starts wearing off earlier and earlier. You’ve got a great rheumatologist that pays attention to this. Hope you continue doing well! (And thanks, but no thanks, to those people who suggest we should go off a treatment plan that’s working …)

  • Tamara Haag moderator author
    2 years ago

    Thanks Carla! I appreciate your thoughts and comments, and completely agree about the unsolicited advice from non-medical personnel about what meds we shouldn’t be on. Wishing you all the best, Tamara

  • PhilNY
    2 years ago

    Tamara
    I know exactly what that feeling is, waiting for and then going to the infusion room. The worst part for me was that I was surrounded by little old ladies who hogged the remote to the big screen TV :). Orencia worked fairly well for me for a number of years. Tomorrow I can give myself Humira and I am looking forward to getting it done. So many people give me so many suggestions still about how to cure myself, but somewhat like you, I have found little to match the biologics. Hang in there. I hope it continues to work for you.
    Phil

  • Tamara Haag moderator author
    2 years ago

    Hi PhilNY,

    Thanks so much for sharing! Yes, I know exactly what you mean about the efforts of others to “cure” us. Here are a couple of articles I’ve written about that experience that you may find you can relate to: https://rheumatoidarthritis.net/living/my-decision-to-be-on-meds/ and https://rheumatoidarthritis.net/living/when-bites-when-the-bee-stings/.

    I often wish that instead of trying to tell us what we should be doing, they would just say, “I hate that you’re going through this.” I myself sometimes come across new research studies or anecdotal testimonies for treatments of conditions that friends or relatives have, and I will bring them up with an introduction of, “You’ve probably already tried everything and this might not be of any help at all, but because I wish I could do something to help you feel better I hope you don’t mind if I pass this along to you.” A little acknowledgment that chronic conditions don’t easily go away seems to make a big difference.

    Thanks so much for sharing your perspective and experiences!

    All the best,
    Tamara

  • Richard Faust moderator
    2 years ago

    Thanks for writing Phil. Hope the people offering the advice are at least well meaning. The volume of unsolicited advice seems to be a problem for many with RA. In this article one of our contributors writes about this frustration: https://rheumatoidarthritis.net/living/why-we-get-advice/. Best and hope your treatment keeps doing the job for you. Richard (RheumatoidArthritis.net Team)

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