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janddmimi
New Member


Date Joined Jul 2008
Total Posts : 1
   Posted 7/3/2008 7:51 PM (GMT -7)   
I am wondering if anyone know what the protocal is for starting remicade? My doctor says that he might start me on it soon...I would appreciate any experiences and information that you could provide. in particular anyone with fistulas on remicade?
 
Also does anyone know the reputation of cleveland clinic in fl?can anyone recommend a doctor there?
 
Thanks,
 
mimi
 
 

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/3/2008 8:31 PM (GMT -7)   

Welcome to the forum janddmimi !!!

You'll find lots of comments on Remicade (Infliximab) in recent posts.

Here is one that contains some basic info:  http://www.healingwell.com/community/default.aspx?f=17&m=1144027

Here are some more: http://www.healingwell.com/sitesearch.aspx?cx=010904608862850737972%3Abe-6h9dblc4&q=remicade&sa=Search+Site&cof=FORID%3A9#933

If you use the "Search Site" button at the top of the page, you'll find more by using the word "infliximab".

I'm sorry, I don't know much about it . . . . and the other links will give you way more than a person could fill in here.

I hope this helps!

Blessings!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


georgialady
Veteran Member


Date Joined Aug 2004
Total Posts : 1169
   Posted 7/3/2008 10:13 PM (GMT -7)   
welcome to the forum janddmimi--I think for most who have taken Remicade the results are from good to bad---we are all different with crohns disease,we are in differnt stages
with the disease--SORRY I had 3 Remicde infusions and was having bad after effects,i was allergic to the mouse part of the drug--I also became diabetic type 1 from Remicade
''but'' like I said we are all alittle different--mainly have your blood work and test done,talk with your gi and see if you are ready for Remicade--The best of luck either way you choose
read on Remicade,ask your gi the side effects,ans ask other crohns people---god bless...

Crohn's 4 ever
Regular Member


Date Joined May 2008
Total Posts : 207
   Posted 7/4/2008 6:45 AM (GMT -7)   
peachypeach said...
welcome to the forum janddmimi--I think for most who have taken Remicade the results are from good to bad---we are all different with crohns disease,we are in differnt stages
with the disease--SORRY I had 3 Remicde infusions and was having bad after effects,i was allergic to the mouse part of the drug--I also became diabetic type 1 from Remicade
''but'' like I said we are all alittle different--mainly have your blood work and test done,talk with your gi and see if you are ready for Remicade--The best of luck either way you choose
read on Remicade,ask your gi the side effects,ans ask other crohns people---god bless...
I was the same 3rd infusion and was rushed to emerg for lymphatic nerve attack, that was over a year ago. Scary. But as everyone says, we all have different stages in our disease, reactions to different meds, and our state of mind (fears and such) .   Humira is better for me, convient too. Good luck and welcome!
Tough times don't last long, tough people do!


mmckenna
Veteran Member


Date Joined Jan 2006
Total Posts : 725
   Posted 7/4/2008 9:30 AM (GMT -7)   
I've been on Remicade for 5 or 6 years now with no problems what so ever. I've never had any adverse reactions, allergies, or any issues.
It has worked very well for me, and has given me many years of symptom free, or near symptom free living.

Before you start Remicade, your doctor will do a TB test. Remicade can activate dormant TB, so that has to be cleared up first.
The infusion process is pretty easy, if you know what to expect. It will usually start with the RN taking a baseline of your vital signs. Once that is done they can start the IV, other than the initial "stick", the process is painless. The Remicade is started very very slowly. The nurse will take your vital signs again to see how you are tolerating the infusion. Any sudden changes in your vital signs can be a precursor of a reaction. Not all reactions are as serious as those above. The RN who does mine, and she has done hundreds of them, has never had anyone with a serious reaction. The most she has ever seen is a mild skin irritation at the infusion site. Anyway, if you are tolerating it well, the nurse will speed the infusion rate up slightly. This process of taking vitals and speeding up the infusion rate will continue about every 15 minutes until the maximum infusion rate is reached. The whole process can take anywhere from 2 to 3 hours. While it may sound like a real pain, it can actually go by pretty fast. I've found that I really look forward to my infusions as it gives me a few hours to relax.

Once you have your first one out of the way, it's pretty easy. Normally, there is a "loading dose" procedure that is done. This consists of an infusion, a second one two weeks later, and then a third 4 weeks later. After that, the infusions will come every 6 to 8 weeks, depending on what you need. This loading dose builds up the amount of Remicade in your system. It's a good idea to keep track of your symptoms as this will allow the doctor to see how you are responding to your treatment. It's common for some of the Crohns' symptoms to start to come back as you get closer to your next infusion. If things get to be too much, you and your doctor can choose to change the schedule of your infusions. Going from 8 weeks, to 7 or 6 between infusions can help reduce symptoms.

As for the reactions, not all are quite so severe. It's also pretty common for the doctor/nurse to "pre-medicate" before the infusion. Often they will administer benydryl or some IV steroids before the infusion. This is to reduce any allergic reactions, if they happen. Also, if you do start to have a reaction, they can administer more drugs, and they can also slow down or stop the infusion rate. After the first few infusions, if everything goes well, you and your doctor can choose to forgo the pre-medications. I've only had the pre-medications the first two times. After that I just go in and get the infusion.

I've tried to figure out exactly how many infusions I've had. I've lost track, but I know it has been a lot. I originally started off at 400mg per infusion. After I flared again, my GI upped it to 1000mg per infusion. That's over double the original dose, and even with that much Remicade, I've still never had a problem. I normally get mine every 8 weeks, but at times I've had it every 7 weeks, and once every 9 weeks. The important thing to remember is to communicate with your doctor and infusion nurse about how things are going. If you are starting to have symptoms return between infusions, let them know. While a little bit is normal, too much isn't. Changing dosage or time between the infusions can help a lot. It is also pretty common to use some other drugs along with the Remicade. I'm on 50mg a day of 6mp. Apparently the two work together very well. There are other combinations other than 6mp, but usually the same family of drugs.

Most importantly, keep in mind that Remicade is a treatment, not a cure, so while you may notice a huge improvement in your symptoms, don't expect everything to go away.

I really hope it works for you as well as it did for me. I've been really fortunate in that it has really made a big difference in my life. I've enjoyed a lot of symptom free living.
Matthew McKenna,

"I'm just along for the ride."


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 7/4/2008 9:47 AM (GMT -7)   
Like a few others here, I only had 3 infusions and on the 3rd one the next day I landed in the hospital from a reaction to it.
So I can't take it, but it does work for others so please don't let this scare you into trying it!!!
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 20mg tapering
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
                           Wellbutrin
No Surgeries
 


RK
Regular Member


Date Joined Oct 2006
Total Posts : 153
   Posted 7/4/2008 10:45 AM (GMT -7)   

I'm finally starting Remicade next week after months of waiting for tests, and diagnosis of a fistula. I really hope it works as I started "leaking" yesterday which is so gross. Having said that, reading some of the posts on people's reactions is freaking me out. I know everyone reacts differently but it really is scary to hear that people end up in the hospital with bad reactions. I guess there is no way to know until I go through it.


32-year-old female diagnosed with CD in 2001.
Currently taking Pentasa 4g x four times daily and probiotics.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 7/4/2008 5:19 PM (GMT -7)   
Hi and Welcome .I had two fistula's when I started Remicade one closed and one didn't. One was large to small bowel and one was after surgery to abd. after I had abd. surgery for a large abcess. I have been DX with severe crohn's. Was on Rem. for six months and then got a lung infection so after 3 doses of antibotics had to go off the Rem. Eventually I had a resection so I got a little over a year in I was also on Imuran and pred. The fistula to skin surface healed after about the third infusion. Wishing you all the best and feel free to ask any questions lol gail

Shoshanna
Regular Member


Date Joined Feb 2008
Total Posts : 91
   Posted 7/5/2008 10:59 AM (GMT -7)   

Before you start Remicade, your doctor will do a TB test. Remicade can activate dormant TB, so that has to be cleared up first.
I agree with Matthew before any one starts Remicade they should have one done.  If you doctor does not suggest one then you suggest it.   I am a person that took Remicade from 2000 - 2004.  I now have lymphoplasmacytic infiltrates in my stomach (not H. Pylori based) and have had cranial bleed (not associated to aneurysm).  They have now stated that they are due to Remicade but it took time a doctor to find this. 
 
I am not saying that Remicade is a bad drug just that it has created complications in my life that has left with less choices with medications.
 
 
Shoshanna
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