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Posted 9/10/2007 7:46 PM (GMT -7)
i havent been here in a really really long time and since i flared up ive missed this place so much. its the only place i have found where people truly understand and i miss it very much.

i have been on remicade since feb 2004 and it was working so well. then a few months ago it gradually stopped working. my ct showed moderate to severe crohns again, like it did when i was first dx'ed. i have been on prednisone 40mg for about 3 months now and its killing me. i have every side effect and its just awful.

SOOOOO my GI decided to double my dose of remicade and to redo the induction doses. has this happened to anyone else? and if so was it effective? im so scared that its not going to help becasue what then? its the only thing that i have either tolerated or has helped. im just worried about it and hope someone can tell me that changing dosing or schedule has helped them.

thanks very much and hello to everybody, especially those i havent seen in quite awhile!

bunny

Posted 9/10/2007 8:21 PM (GMT -7)
I haven't had my dose increased or anything like that..but i do find it interesting that your doctor is gonna do the introduction doses again..I just had my 5th infusion and at first..like after the 1st and 2nd I was feeling GREAT!!!!...then suddenly I started to get some symptoms back..had to do the whole pred thing too : /...They said If I am still having problems they will increase me to 10mg/kg..if that doesent work..probably combine with a med like imuran..and if that doesnt work..i'm gonna jump off a bridge..lol..kidding..then it will be humira..have you tried humira?..If not that will probably be your next option. : )...good luck I hope you get relief soon : )
Posted 9/11/2007 5:36 AM (GMT -7)
Hi Bunny I just got my fourth one of Rem. doubbled and see my GI this week.I did notice that I went to the bathroom alot and had a great cleaning out I am having some D with solid mixed I am also cutting down on Pred. so am wondering if that is causing the D I also been drinking coffee I started that last week. So not sure what is going on I do not have pain which is good. I think I will have D when I cut the pred. down so planning getting off that my glucose has gone up so going without sugar is getting to me some. The one big thing I noticed is that the night sweats have stopped since my last Rem. whoppee and yah on that.So maybe things are getting better. Hope you get things straitened out on your meds keep in touch and let us know it is not uncommon to have it doubbled I don't think ,it really worked for quite a while for you that was great. lol gail
Posted 9/11/2007 12:36 PM (GMT -7)
youre right i think that if this doesnt work then humira would be next. i am really hoping that the cade will kick in tho. i know im really lucky that it had worked for so long. i had my first induction dose last week and ill have another next week. its weird tho, usually i feel really crappy like i have the flu for 3 days or so after and i didnt get that this time. i also usually get some relief about a week after but i havent noticed that either. ill try to be patient tho i konw this can take some time.

thanks so much for your replies!

bunny

Posted 9/11/2007 8:47 PM (GMT -7)
welcome back...hope you get some answers. You know I dont have them so hope someone else does..The place moves a lot faster now than it did when you were here last so you may have to bump your post up to get it read by all that may have an answer. Again welcome back...
Posted 9/12/2007 2:38 AM (GMT -7)
Bunny, I've had my Remicade increased many times since I started it 1 1/2 years ago.  I am now at 10mg/kg every 4 weeks.  My GI would first increase the amount of weeks, then increase the dosage if that didn't work.  I may have to try Humira, sice the Remi seems to be "wearing off" again.  However, I felt better with each increase as far as diarrhea goes.  However, I've never heard of "restarting" the loading doses.  Good luck to you!  Julie

Posted 9/12/2007 1:25 PM (GMT -7)
I have been on Remicade every 8 weeks since Oct 2005. Just in the last few months (maybe 4 to 5 months) it has been wearing off about 3 weeks before the next infusion. My GI upped my Imuran to 175 mg. and talked about changing the Remicade if that didnt help or possibly Humira. I am in the middle of an ongoing flare at the moment that hasnt resolved and I had my last infusion on Sept 1st. I am worried because normally I feel great afterwards. The last time I felt like this I ended up in the hospital with an obstruction. I hope if you have to change to something else that it will help you. I am afraid of what they will do in the hospital. My main problems have been strictures and obstructions over the years and when I have been hospitalized lately it has been like a black hole. When I was first diagnosed the hospital stays were only like 5 days and I was back home , but not lately which is what scares me too.
Posted 9/14/2007 12:36 PM (GMT -7)

going into the hospital is scary anytime so i hope you can avoid that, thats wha tim trying to do. thanks for all the replies, i guess changing things with the remicade isnt that unusual then.

bunny

Posted 9/14/2007 1:08 PM (GMT -7)
My GI mentioned upping the dosage amount or increasing the infusions from 8 weeks to closer together. I just had mine on Sept 1st and still am having quiet a bit of pain after eating solid food. I usually get relief too within a few days but this time around it is a major difference for me too. I am starting too wonder if it is time to try Humira or something else. I hope you can get some answer too and stay out of the hospital also. I see my GI today and will see what he recommends. I cant eat or sleep right now because of the pain Take care, Amy
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