On the timing I don't think it will make that much of a difference...it wasn't late by 3 or 4 weeks....or months out.... although....my doctor told me at the beginning that I could not miss the 2nd dose or be late with the loading doses as the possibility of antibody growth increases ... So unsure about
that... It's always good to get antibody levels checked. If they are high they can try dual therapy.... Or they know to watch you carefully and to develop a back up plan. My doc wants my Remicade level... For me... To be above 13. Every person's number is different. And remember if you go off a biologic the chances of restarting it later down the road are not good.
Your doctor's assistance should have listened to you.... But then again
....they did put you back into the hospital so you could get the next dose. (I'd make sure they got it straightened out asap. If the staff had to suffer from the symptoms of IBD they'd have a different attitude.)
"The Devil's Tik Toks", I was on Prednison when I first started out and a few times since. Be very careful with those things. I now use a walker, plus my thumbs, back, elbows and hips now have Little to no cartilage. I see a rheumatologist and various other surgeons that are trying to figure out if they can help me now. Please stay on top of that and try to get off asap. Some people can take that med and not have issues while others are not so lucky.
I started tapering after my starter doses. It was a fast taper from 80 mg to 40 to 20 to 10 to 5 then off...so a little over a month and I was off. I had complained about
my knees and hips and once we saw the CT scan he got me off quickly. We have only used it when I went into really bad uncontrollable flares while still on my meds... But late taking doses because of surgeries. I developed antibodies and taking methotrexate drove them back down--but that doesn't happen for everyone. I have just been lucky in that aspect. So.... Please be careful.
And I want you to remember... I am that rare case of UC/Crohn's that was so severe my GI told me if Remicade did not work I could expect to live 3 to 6 months. I am that worse case scenario and yet.... Once we found a good GI, built a good team of doctors and found what works...I stabilized.
So hang in there. Advocate for yourself. Hope for the best, prepare for the worse, and finally trust but verify.
Post Edited (clo2014) : 1/19/2023 7:41:55 PM (GMT-8)