Waiting to Start Remicade...

[thisisme]

Hey everyone!

I was just recently diagnosed a week or so ago, and after speaking with my doctor yesterday to go over a treatment plan, she has decided to start me on Remicade, as I have a fistula currently developing between my small bowel and bladder. I just started Prednisone in the meantime while the Remicade gets organized... But I don't really know what to expect from the Remicade treatment? Any common side effects, or troubles people have had?

We are currently trying to get the Ontario government to cover the cost of the treatments, which the doctor is a bit concerned about. She said generally they prefer to do the "step-up" approach, but given the fact that a fistula is developing, she doesn't see the point in starting "small" as she put it. So I hopefully they will approve it, as I have heard it is quite pricey!! And I am not too sure what my own insurance would cover... I really should find these things out!

Also, the doctor mentioned Imuran, and the possibility of using it in conjunction with the Remicade depending on how the treatment progresses. I'm not familiar with any of these drugs to be honest, but any advise on these two meds together?

Thanks everyone!

 

[Razrwolf]

Hello,
This reply won't be much help (but maybe I can bump your topic up). I was diagnosed in August and had a perianal fistula and abscess at the time of diagnosis... I was hospitalized and has a fistulotomy and abscess drained, and am still trying to recover at home. Doctor put me on Aza and Pentasa (along with flagyl) for over a week now, with no improvement... Doctor says he wants to try remicade next.

Any status update on your end?

 

[Lisa]

Just catching up on some posts - I had fistulas which were cleared up with the start of Remicade - hopefully that will work for you too!....if you have specific questions about any reactions etc, a search of key words should bring up a bunch of threads.

 

[thisisme]

@ Pasobuff -- Thanks for the tips on searching for various side effects! From what I've been reading, Remicade appears to be pretty useful when it comes to Remicade, so I am hoping for the best!

@ Razrwolf -- Thanks for bumping up my post! lol. I hope you are recovering well, sounds like you haven't been having the best time! But at least they found it and are doing (or trying anyways) something about it! I was just put on Imuran (Aza) this week, along with Cypro for an infection. The Aza is bringing me down pretty hard, very tired, headachy, and nauseous... which isn't helped by the prednisone Im on as well (which my GI just increased the dosage on )! I did hear that Aza takes 6 weeks or so to actually see results, so hopefully you see some results from it soon? I know I was started on a very low dose until I start to adjust, and they confirm I can handle the drug well.
No real status update on Remicade! Was supposed to start today, however that got pushed to November 1st due to a UTI (thank you fistula!:mad2...I have read it's a very good treatment, and most see very good results, so if your doc wants to try it next, might not be a bad thing!
Of course... like I said... I haven't actually started on it yet... but I guess I will know more after November 1st!

 

[tots]

I am tired on treatment day due to the Benedryl and Zyrtec I get before my infusion. I have learned to take Tylenol as directed on the bottle for a few days for that general body ache ect.

Hope your Dr is successful in getting you the "step down" approach. Mine used the "step up" approach and its ben a long long year!


Lauren