Remicade Questions

[judyt]

First I want to apologize if this has been answered already. I am here on behalf of my mother, who was diagnosed with Crohns about 15 years ago. She had one surgery back then, is very careful with her diet, been on various meds and has had her ups and downs over the years.

For the past several months she has been really sick and has to eat very bland. She hasn't felt this bad in a long time and is very depressed.

Her Dr is now wanting to try Remicade and she is very nervous about it. I am glad that I have found that many of you are doing well on it and I really hope that it can help her. Our concerns are her age (almost 73) and of course the side effects sound really scary.

One question that she wanted me to ask is if this does help her how does it work as far as the schedule? I realize everyone is different but do you have so many treatments then stop for a while? How often are your treatments?

I really appreciate this forum and after reading what many of you have been through it makes me realize just how hard this has been on my mother. It is frustrating for her because she doesn't look her age and you really can't tell she is sick by looking at her so people tend to act as though she is a bit of a hypochondriac at times.

 

[Lydia]

Remicade worked wonders for me. My fistulas started closing and I started going into remission 4 days after my first infusion.

I have had a few temporary minor side effects that pale in comparison to my crohns disease.

You get the loading doses at 0,2 and 6 weeks and then every 8 weeks after that. Once you start you cant really stop, because if you do, you can develop antibodies which can result in a severe allergic reaction when you start up again. So if you stop remicade you will have to switch to another crohns drug afterward. Some people can take it after stopping but this seems to be the exception to the rule. However if you feel good and are in remission then why would you want to stop, IMO.

 

[judyt]

Hi Lydia,
Thank you for the information. Could you tell me what you mean by loading dose?

 

[Sha0913]

I'm on remicade and have been since 2009, it is my miracle drug, i don't know if I would be functioning without it. Loading doses are when you get your fisrt 3-4 doses close together to build up the medicine in your body, usually 0(first week), then 2 weeks later, then sometimes 4 weeks, but usually the 6 weeks after that, then you usually get it either 6 or 8 weeks apart from there on. Hope this helps a bit.

 

[Lydia]

Loading doses are required to get the medication at an effective level in your body. Its a normal dose but the doses are closer together (0, 2, and 6th week). Then after that its every 8 weeks.

 

[judyt]

Thank you Sha and Lydia for your help. I really hope that this helps my mother although I do worry that she may have a harder time do to her age.
Judy

 

[tpd320]

I get an infusion once every 8 weeks. Takes me about 3 hours to recieve it...

 

[sabin]

Wanted to mention something about the allergic reaction that can develop.

i tried Remicade back in 2003 but stopped because of various reasons.

About a month ago i started woth Remicade again so this happens:

-1st treatment everything went great no reaction i went home felt superb for a week before the crap started again.

-2nd Treament 2weeks ago went there started the drip 5 mins goes by and suddenly i felt that i had the weight of the world pushing on my body from all directions and i couldn´t breathe and of course this was an allergic reaction wich according to the Dr´s there is pretty usual but for the 1st treatment and not the second.

I was in the E.R for one hour where we decided to go on with the treatment but alot slower and it went by OK.

My next tratment is on the 22nd.