I have only had the first 3, so those were 0, 2 and then 4 weeks apart. Now I am waiting 8 weeks from the 3rd transfusion. I am not exactly sure what the dosage will be-I think the first 3 have been 5mg/kg for me, and I am not sure if those are just for the loading doses or if that will be the regular dose? I forget now.
I know the plan is every 8 weeks unless that doesn't seem to cover me-then they will either bump up to 6 weeks or keep it at 8 and increase the meds. My next infusion is scheduled for June 3rd.
That's where I am at right now. I have noticed increase in symptoms over last week. Have two more weeks before the 8 week period is up.That is what I worry about
too. I am tapering off of pred right now-and today I went to the bathroom 3 times, where as normally I go once. It freaked me out a bit because the last time, I had to get there fairly quick. BUT I went to the Melting Pot last night with my girl friends and ate WAY too much food (I was physically uncomfortable when we left), so I am hoping it was just that. But I worry I won't make it to the next infusion without symptoms coming back.
Can you call and let them know you are seeing an increase in symptoms? Maybe they would bump up the infusion date? Or add something else? I have Canasa on stand by (it seems to work well for me typically) if things start getting worse before June 3rd (which sounds REALLY far off to me right now).
I hope things don't continue to get worse for you in the next two weeks.
Getting Closer to Remission!!!!
34 years old, stay at home mom of 2 girls, ages almost 5 and 3.5
Diagnosed in March 2007, symptoms started Dec. 2006Currently on:
OUT of Humira trial-it stopped working
TAPERING pred (currently on 25mg), started REMICADE 2/26/10, otherwise taking Asacol (6/day), slow-fe iron (double dose), milk thistle, multivitamins, calcium, Ultimate Flora Critical Care, Vitamin C, and starting on 10,000 IU daily of Vit D, as well as GI Revive.