What happens when your biologic starts wearing off
Those of us with autoimmune diseases know our bodies so well, and while we often cannot explain what we are feeling, we know something is up. Starting in February I had my three loading doses of Entyvio, and then experienced my first 8 week interval without the medication. So in theory I have had 4 doses of entyvio. I can honestly say I started feeling results after the first or second infusion, and was excited that things were moving in the right direction.
But this last 8 week period has been a doozy. After 5 weeks I could start to feel some symptoms (or maybe they were side effects) of the drug. At first my GI was concerned that the extreme bloating around week 5 (see my post about my belly!) was a side effect of the medication. She had me do a calprotectin test (ugh, thats a blog post in itself), then another, and I still havent heard back from her so, thats a thing. Meanwhile, I reached out to the lovely folks on my facebook group and they guided me towards activated charcoal pills. Folks, I kid you not this stuff is amazing! It is designed to work with the bacteria that converts certain foods into gases such as methane, and it absorbs the gases. While it doesnt act on any cytokines or inflammatory factors it definitely reduces the bloating by way of the gases.
Unfortunately around week 7 the charcoal was no longer doing the trick; there was more happening than just bloating. First it was upper colon pain, which I was scared it may have been liver pain as they havent ruled out PSC yet and this pain was very prevalent back in November during my diagnosis. So I went to the hospital, and my blood work was all normal (CRP levels to come, and no Calprotectin obviously). They discharged me, and that night I started developing radiating leg pain, and joint pain. I became so tired, I didnt know what to do.
One day before my next infusion (yesterday) I was scheduled to hop on a plane and get back to Vancouver from Ottawa (thats across the continent for those of you not familiar with Canadian Geography) and that didnt happen. Just as I was approaching the airport my nausea became so bad, and I wasnt sure I could make it through the airport without either hurling or fainting. My first instinct was to call the Innomar clinic that administers my Entyvio infusions and asked them if they could fit me in that night or the next morning. They were so kind! They squeezed me in for this morning, and contacted the Vancouver site to let them know I would be having my infusion in Ottawa. I also had to call the Vancouver General Hospital to let them know I wouldnt be back in time for my MRI (for my PSC) and they too were very lovely. They rebooked me somehow for next week.
Today I received my infusion, met the nurses that will be administering my infusions come September when I move back to Ottawa, and have done literally nothing but sleep all day!!! I mean, all day! Pretty sure I have been delirious for days, and may have even attempted to write some emails that I cannot remember (lol). The pain has not gone away, but the leg pain has, and the joint pain is lessening. Hopefully this is a lesson learned, and something tangible I can take back to my GI to optimise my treatment frequency.