Everyone is different and responds differently, so this is just my experience.
The day before I make sure to drink a lot of extra fluids.
The morning of the treatment, I take some Tylenol and a Zyrtec. This is the protocol. A friend of mine that takes a similar medication would take a Sudafed and Tylenol before their infusion. Basically, the allergy medication helps with any possible reactions. (If you have any reactions, that will be taken care of, so don’t stress about that.)
Wear comfortable clothes. I suggest short sleeves. Pack some things to do: iPad with headphones, a book, crossword puzzles, whatever. I also bring a bottle of water and/or Gatorade and some snacks (crackers or pretzels and a granola bar is my go-to).
The setup is standard and easy. They do your blood pressure and ask if you are feeling well. When you get these infusions you can’t do it if you are sick, have a fever, on antibiotics, etc. So you’ll have to reschedule if you are ill.
The nurse will put an IV in and start the infusion and saline.
You sit in a recliner type chair. It’s in a little cubicle type room with a curtain. One time I had an infusion done at a different location and it was in a pod with three other people. The nurse will bring you a pillow and warm blanket.
After that, it’s pretty much just lay there and wait. For my first one they did it gradually. The whole process took about 4 hours. It was about 20 minutes of prep and set up, three or so hours of infusion and then a waiting period. Now, they are about 2 hours or so. I can choose to do a waiting period after but don’t need to because I haven’t had any reactions to the medications. After my next infusion I can choose to do the rapid protocol (which is a 30 minute infusion I guess?).
All in all it’s fairly boring. I usually have to use the bathroom once or twice during the treatment. Probably from all the liquids I drink plus the saline in my IV. All you have to do is take the IV pole into the bathroom with you (it’s on wheels).
I usually get fairly sleepy by the end of the treatment. When I’m done I head home. So far my infusions are usually in the morning so I have lunch after and then take a nap. The infusions really wipe me out. Last time I ended up taking a 90 minute nap!
Other than that, there are not a lot of side effects. I am definitely tired and worn out for a few days after the infusion. I’ve learned the hard way that I need to take it easy for those days and not just resume my normal life and activities and ALSO keep taking the tylenol or advil, too. I tend to have a headache for a few days afterward.
This last infusion I did too much and paid for it. So going forward I will just take it easy. That means no working out the next day, or planning a lot of activities. It’s interesting, when I was going to start these treatments I looked up a blogger that I used to read a long time ago that did a similar treatment for crohn’s/colitis and she’d go do heavy-duty workouts right after her infusions (like, crossfit). I am just shocked. (It’s ok to listen to your body and rest.) (She also claims to have cured her condition with her diet and supplements she sells but ok….)
Anyways! That’s pretty much it! I am done with the “loading phase” (Infusion #1, then 2 weeks later infusion #2, then one month later infusion #3) and move on to the maintenance phase: infusion every 8 weeks. I have my follow-up appointment with rheumatology at the end of October!
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