I’ve started my treatments for psoriatic arthritis.
“(Psoriatic arthritis (PsA) is an inflammatory, autoimmune condition that can affect both the joints and skin. The specific cause of psoriatic arthritis is not fully known, though it’s believed that an overproduction of molecules in your body may activate any of the multiple symptoms of PsA.)
When these molecules, such as the IL-17A protein, are overproduced, your body’s immune system has inflammatory responses that can contribute to pain and swelling in the joints and tendons, and sometimes, even skin plaques—raised patches of red skin that are thick, scaly, and itchy. Without proper treatment, PsA may worsen, which is also known as psoriatic arthritis flares. And if left untreated, psoriatic arthritis may cause permanent joint damage.“
CHRONIC MEANS FOREVER.
How does the infusion medication work? It works to decrease the inflammation in the body. Unfortunately, the treatment can lower your ability to fight off infections because it suppresses your immune system. 🙁
So you do Infusion 1, then two weeks later Infusion 2, then one month later Infusion 3, then after that is I guess the maintenance phase where it’s every 8 weeks. That is when you should be in “remission.”
Apparently after a few sessions, if there’s no side effects, I can go to “rapid” infusions. So hopefully that happens and I don’t have to take so much time off to get the infusion.
First Treatment
It took almost 4 hours. There was some pre-set up. And no one told me I was supposed to take Zyrtec and Tylenol before my appointment, so we had to do it there and wait 30 minutes. They put the IV in and slowly ramped up the medication.
I sat in a chair that reclines. I brought my headphones and iPad, a few snacks and water. I basically just watched some netflix and played scrabble on my phone. Towards the end of the treatment I started to get pretty sleepy and dozed a little bit. Then I had to wait about 30-45 minutes after the infusion to check for any side effects before I could leave.
I went home and laid down for a bit. I felt cold and sleepy. Then I got up and ate some dinner. I had an early bedtime. The next day I felt pretty wiped out. I took it super easy and didn’t do much but work. (Thankful I work from home!)
Overall, I didn’t have any side effects other than feeling really tired. It was too early to know if it was working. HOWEVER….whether it’s wishful thinking/placebo effect/meds working = my Achilles tendinitis AND my skin issues were markedly improved. I am hesitant to get excited but I am cautiously optimistic.
Second Treatment
My second treatment was two weeks later. It took less time because they didn’t need to titrate the dosage. So it was about 2.5 hours this time.
Afterward I went home and had lunch and took a nap. I felt tired and worn out but not quite as bad as the first time. The day after I felt tired, too, but was able to go swimming.
I ended up getting some kind of stomach bug (thanks daycare) so I didn’t feel awesome for several days. At first I wondered if it was a reaction to the medication, but I think it was just a bug.
My Achilles ankle pain is still feeling better, so I am hesitantly thinking that the medication IS helping it!
I’m grateful that I have a friend who is also doing a similar treatment for another autoimmune disorder and has been graciously answering my questions! I’ve had so many questions and you can get lost in google searches.
I am sharing my journey here because my hope is that maybe it helps someone else who is going through something similar. I’ve been reading some chat board posts about PsA and it’s mind blowing how often other people’s stories are close to mine!
My next treatment is in a month.
bethh
I’ve always wondered what it means to get infusions – thanks for sharing your version of the treatment you’re getting. I’ll be hopeful for you and your tendon!
Lisa Eirene
I hope it works too! Thanks 🙂