Clearing Up RA Infusion Confusion
I have been getting biologic infusions for rheumatoid arthritis off and on for over 20 years now, depending on the medication I am on at any given time. For the last 7 years now, I have been on Orencia and the infusion version for the last 2 years.
Scheduling biologic infusions
There are a few challenges as well as the confusion that surrounds infusions. One of the challenges is simply the scheduling which, depending on how often you get them, can be quite tedious.
Account for travel time
I get them every four weeks which means I need to be sure I will be available for about 2 hours every month, account for travel to and from the medical site, as well as the actual infusion time. That may seem simple but, depending on your schedule, it can be daunting.
And, for some of us, the time spent getting to and from the site is much longer, and then adding the infusion time takes even longer. I used to get one every 6 weeks and it took 4-5 hours plus getting to and from, so it pretty much cost me a whole day.
Now, I live minutes from the site and the infusion only takes about 30-40 minutes which is such a blessing.
Tips to make scheduling easier
I discovered that, nowadays, many rheumatologists provide infusion suites within their offices and so I looked for that in a practice and found one very close by.
Get your appointments as soon as you can
Additionally, I schedule three months out so that I have it “on the books” and can plan my life around it. Now, occasionally (but less often than I thought), I have had to shift the appointment because of some circumstances. But, I am more than willing to do that if it means I have a “regular slot” to rely on.
I like to on Wednesdays, as it is in the middle of the week which tends to be less busy for me and I am less likely to be going away. If you do them on Mondays or Fridays, it may mean changing them to accommodate traveling or other activities.
Find a time of day that works best for you
I also prefer doing them first thing in the morning, so I get mine at 8:30 AM as that is the first infusion appointment of the day. I do this because, by being first, there is less likely to be a delay in getting started.
Once in a while I had to go later and inevitably, I sat in the waiting room for a much longer time. Of course, everyone needs to find the right day and time that works for them.
Biologic infusion tips
When it comes to the actual infusion, here a couple of things to keep in mind.
Drink more water
One, drink lots and lots of water before you go! This keeps those veins nice and plump and much easier to access. I always bring water with me as well.
Plan for the unexpected
Also, go early if you can, so you have a chance to relax. It can be a little intimidating at times, especially if there is something quirky that happens like your vein is tough to access or you have a new person doing the procedure. I try to do my meditation before I go which keeps me nice and calm.
Take prophylactic medication if you can
Some practices offer an antihistamine and acetaminophen before starting the infusion and I recommend doing so if it is not prohibited by your doctor. This ensures or at least greatly reduces, any chance of a reaction. I know some folks who have had reactions and it can be unpleasant. So, if they offer prophylactic medication and you can, by all means, take it.
Advocate for yourself
I have had the occasional issue. Recently, a new tech was doing my infusion and she simply could not get the needle in anywhere she tried. Eventually, they brought in the gal who had always done mine, and it went fine.
Having a regular tech made me less anxious
The next time I went, I again had the new person and, again, she was not able to do it. This time, I asked for the other person promptly and when she came in, I said, "You need to do it from now on. I am not prepared to have bruises and soreness every time I come." Additionally, it was causing me anxiety which is the last thing you want.
It is okay to speak up
I then told this to my rheumatologist the next time I had a visit with her. I was reluctant to say anything at first as I did not want to get anyone in trouble. But, she actually asked me how my infusions were going and so I told her. She was wonderful and said she was very glad that I told her.
After the infusions are done, I head home and take it easy for a bit. That way, I am letting my body adjust to the medication and it is nice to just relax.
This is my personal experience
I think many people think infusions are very cumbersome and even painful, but that has not been my experience.
I used to inject my medication weekly, biweekly, or monthly. I did not mind giving myself the shots, but traveling with all of the paraphernalia as well as packing the medication itself was a pain in the neck. Infusions, on the other hand, mean you have nothing to do but show up and get it done.
I am finding that I like infusions better and I am happy that I now get my medication in that form.
Has having RA put a hold on your ambitions?