Hi everyone. I wrote back awhile ago, asking about Remicade. My son is sick of taking Prednisone, and he has a flareup 3 months after he is done tapering off. His present doctor isn't keen on the Remicade. He said he'd have to keep getting blood work etc... Before my son was taking 6 Asacol a day and 3 6MP's (Purenithol) a day. Now the doctor wants him to just take 4 Asacol every OTHER day, but still take the 3 tablets a day of the 6MP's.
Does anyone else take such a dose?? My son is still tapering from the prednisone now, 20mg a day, until he is down to 1/2 pill a day (5mg) so he is kinda in a remission. It always heals him quickly, But after that, in 3 months, he'll start to flare again. Same ole routine.
Now, he has only 5 B.Ms in the morning, with no pain or blood. Now, this may sound gross, but all you guys are in the same boat, so I gotta ask this. My son starts out in the morning, with a fairly normal BM. solid, and no mucus.
Then the 2nd, 3rd, still kinda solid, but a little more loose.
by the 4th or 5th trip to the bathroom, he just has a pile of mucous, that looks all stringy etc but still the urge to go.No pain. Then he knows he is done for the day. He has to get up at 6:00 a.m. just to finish all the bathroom trips before he leaves for his jobs around 8:30. He doesn't want to have to stop at a gas station.
I know all this because I , as a concerned mom, made him tell me exactly what is going on. Trust me, I don't look, just take his word, since I witness all the trips in and out of the bathroom.
It is hard to watch this though.
Anyway, I also mentioned that he has no insurance and someone gave me the number of PAP. I called. talked to the lady. She sent me the forms for Remicade assistance , if he qualifies. Then my son's doctor nixed the idea of Remicade. My son, may have to change doctors if he wants to get it. Does anyone on Remicade have to get constant blood work? And his doctor also told him that if he missed a dose, he'd be in trouble, and he couldn't start it up again. He just wants him to stay on the 6MP and The Asacol Does anyone out there do that, and is it helping? This is getting nerve wracking but I like to hear all or your experiences. Thanks for reading this long post, I appreciate any answers.
Just a mom.