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lovemycats1947 posted:
Hello Folks.
Havent been here for a while, hope everyone is well. I will be starting the remicade infusions this week, and wondered if anyone here was getting them?
All I found for remicade was written 2 years ago. Am hoping someone can help with some questions. Hope too hear soon!
Thanks, Linda
hannahleigh89 responded:
I was on Remicade for about 3 and a half years. I was receiving the maximum safe dosage allowed for my weight, and a little bit over that for a while. My problem at that point was that I had both UC and Crohn's. The Crohn's in my small bowel responded very well to Remicade (as in very little inflammation present during colonoscopy) but my UC in my large bowel did not. I've since had my colon removed because the UC wouldn't respond to anything, and I've wondered if maybe Remicade should have been started at that point. But once you stop it, your body builds antibodies and it generally isn't safe anymore.
Anyway, I don't know if I've helped you any or not. Remicade is a fantastic medication in those it works for. And though the risks seem high, in comparison to what you could be on, it's pretty safe.
lovemycats1947 replied to hannahleigh89's response:
Hello. It was very nice to get some info on this med, and how everyone was doing. How long did it take before noticing a difference? This was my first infusion, so I tried not to hope for a miracle. I am sure we probably all have been on every med. known to man for this disease. Sure would be nice to leave the house without worrying about the bathroom! LOL
Well thank you again, and I hope to hear from you again.
Hope everyone is having a pain free day!!
hannahleigh89 replied to lovemycats1947's response:
I think with Remicade, you're supposed to have improvement by like, the third dose. So it takes it a little while, and it works slower for some than for others.
hgreenwood7058 responded:
Hello. I am lurking as my husband has Crohns. He too has bee trying everything underneath the sun (he was diagnosed in oct 2011 just after he turned age 25). He is currently doing a research study but will be finishing that in the next month. It has worked well for him but unless they offer an extended study he will have to choose something else to do. He used to go to the bathroom about 20 times a day if he was having a bad day and he would be afraid to leave the house esp if there was not a bathroom within about 30sec to a minute of being near.They tried about 4 drugs and then recommended either remicade or humira. We opted for the reasearch study first because we figure "eh its worth a shot". With the research study he has been taking 10mg prednisone (the meds never helped but prednisone around 40mg would be like a miracle but he knew he could not stay on it forever). but the 10mg prednisone, 6mp (though this never helped even prior to the study but since he was on it prior to the study he had to stay on it) and then this drug. He now currently has to go on avg of like 3 times and it isn't a sprint to have to go. He is now going to have to look back at the remicade or humira. Since we both work full time and our son a very active almost one year old. We are leaning on humira because you can do it at home. I am curious though how the remicade is working for you now.
lovemycats1947 replied to hgreenwood7058's response:
Good Morning.
I had my second infusion last thursday. So far there isnt a lot of improvement, but there is some..Although the Diaherra(can never spell that) was a big problem, it was the painful cramps that came with it that was the worst. Mostly it was never knowing when everything would hit.
I was offered the humira as well as the remicade. I opted for the remicade because I had heard good things from people. I am a big chicken when it comes to shots and knew I could never give them to myself so humira wasnt for me. Im sure your husband doesnt have that problem. LOL
Its really too bad prednisone has such long term effects because it sure worked for me. Anyway, everyone reacts different to medications, I am able to get the infusions at home which has been a godsend to me, but I am retired and have the time as it takes at least 2 hrs. every time. Your husband may need something faster.
I think the remicade is working, and will work even better with more infusions. Right now its in 4 weeks, then every 8 weeks. Do you know what the study medicdation is? Just curious.
Well, Im not sure I helped in making a decision. I would like you to let me know what you decide, and how its working for him, if you have time. If remicade doesnt work, then humira is next for me.
Hope everyone is having a pain free day!
butteerfly1999 replied to lovemycats1947's response:
hey I have been on remicade for over a yr and at first it was not working for me then my doctor changed the dosage and frequency between infusions u see I have had crohns for 28 yrs I was diagnosed when I was 4 and now I am 32. I have had 16 surgeries all do to how crohns effects the whole body. not to mention I have an ileostomy that I have had since 9. once I spoke to my dr. and finally found one that would listen since he has changed it I went from being hospitalized almost every month for the past 3i/2 yrs to not being admitted for 5 months straight. give it about 4 infusions after that if no change then talk to dr. about what I said. if u need to talk I am here . u got this and it will get better.

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