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CD6228510 Posts: 36
10/3/13 3:35 P

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Thanks Kris! I just moved to a new state, and my doctor in my old state wants to test antibodies and see if it's time to increase Remicade dosage or frequency. Unfortunately, I can't do any diagnostics for him and will have to wait until I find a local doc to transition to. I'm not convinced it's IBS...after all these years I have a pretty good sense of what MY true Crohn's symptoms are...and this seems a little severe. Back to pred (YIKES!) for now...hopefully not too long, either. emoticon

SLIMMERKIWI's Photo SLIMMERKIWI Posts: 35,545
10/1/13 2:52 P

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Hi Erica - I went to send you a welcome goodie, but you don't have a SparkPage so I couldn't. Instead, here is one here:
emoticon emoticon emoticon

I guess it would be kinda difficult to tell if it was Crohn's or IBS under the circumstances. I hope that the Remicade continues to work for you.

Kris

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I am not a Dr - please check with your qualified Health Professional for a diagnosis and treatment plan


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CD6228510 Posts: 36
10/1/13 10:29 A

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I've been on Remicade for about 2 years now and...clinically it's working. Tests show my disease "activity" has been majorly reduced. But symptomatically...no go. Doc says it could be IBS on top of the Crohn's. Feels the same to me :(

But...I have also tried Pentasa (controlled symptoms for 2 years until it stopped working completely), Humira (gave me hives), and Cimzia (no effect), so at least the Remicade does something.

Best of luck to all.

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8/13/13 8:30 P

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DREANIGIRL8's Photo DREANIGIRL8 Posts: 122
7/28/13 9:20 P

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I've been on Remicade for just over a year and I am finally well enough to go back to work! Good luck and I hope it works for you.

SLIMMERKIWI's Photo SLIMMERKIWI Posts: 35,545
7/9/13 7:14 P

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I'm glad that you are getting a good response to this. Long may it continue :-)

Kris

Co-Moderator Dealing with Depression
www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=953


Team Leader Essential Tremors :-) (Benign and Familial) www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=30225


Co-Leader Crohn's Can't Stop Me
www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=17464


I am not a Dr - please check with your qualified Health Professional for a diagnosis and treatment plan


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WEASETTE's Photo WEASETTE Posts: 8
7/9/13 11:38 A

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I am currently on Remicade 10mg/mL every eight weeks. I started on the 5 mg and it didn't work. After seeing a gastro in Pittsburgh he found I wasn't getting enough of it to work so he doubled the dose. It helped a great deal. Next monday will be my third double dose. He also put me on oral Lialda 4.2 mg a day.

www.facebook.com/groups/gethealthylo
seweight/
My Weight Loss Support Group on Facebook!


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LCOLANGELO0803's Photo LCOLANGELO0803 Posts: 21
5/5/13 9:23 P

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Thanks! Planning on starting a spark page. And yah things have been a bit rough but better days ahead! Just happy to feel better to start exercising again!

SLIMMERKIWI's Photo SLIMMERKIWI Posts: 35,545
5/5/13 9:09 P

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Hi LCOLANGELO0803 - welcome to our Team :-) If you would like to create a SparkPage and have it open, you will find that you will get tons more support from our members - as well as your other teams. We would be able to leave you a little goodie or two, as well :-)

It sounds like you were a bit in the wars - I hope that things pick up for you now!

Kris

Co-Moderator Dealing with Depression
www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=953


Team Leader Essential Tremors :-) (Benign and Familial) www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=30225


Co-Leader Crohn's Can't Stop Me
www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=17464


I am not a Dr - please check with your qualified Health Professional for a diagnosis and treatment plan


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LCOLANGELO0803's Photo LCOLANGELO0803 Posts: 21
5/5/13 8:55 P

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I have had crohns for 20 + years and have been on Remicade since 2006. It worked wonders for me in the beginning. I just had my antibodies checked and was told that it isn't working at its max but its not so low that I need to find something new. I never had any side effects.On the other side thought I am 6 weeks out from surgery. I had 3 setons (rubber bands) inserted at the Cleveland Clinic for vaginal anal fistuls. It's been hell! So the remicade hasn't helped in that regard. I hope this helps!

GASTRODIVA's Photo GASTRODIVA SparkPoints: (0)
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3/16/13 9:22 A

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I've been on Remicade for 4 and half years. It has been a Godsend. I had been admitted to the hospital due to hemorrhaging through perianal fistulas. I haven't had any bleeding since. The fistulas are mostly closed (I have dealt with these for over 30 years). I have had a couple cases of cellulitis, which were quickly healed with antibiotics. I recently developed psoriasis on my elbows, which is controlled with an inexpensive ointment. Would I do it again? In a heart beat. Being able to go out and do things is so worth it.

The only thing that irks me is that I gain weight because I could eat all of those things I hadn't been able to eat for so many years. Don't go overboard with food.

SECOND2 Posts: 33
3/9/13 9:28 P

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I've found it easier to manage my weight because I can generally eat when and what I want. Sadly, for me, the ability to eat like a non-crohn's person has lead to a big gain for me lately. emoticon That can't be blamed on the Remicade though.

Tonight I made spaghetti sauce with tomatoes, onions, mushrooms, celery, and zucchini. Before Remicade I would never have been able to tolerate so many veggies.

I hope you are able to start your Remicade soon and that it works amazingly for you!

-Kathy


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GENEVIE5's Photo GENEVIE5 Posts: 3,181
3/9/13 6:59 A

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Thank you. In a way, I can't wait to get started on this drug. I am tired of being sore and tired all the time. I feel bloated everyday. I also want to see how my body will react. Most of what I've been hearing seems to be positive. I also wonder how it will affect my weight. Seems to me, I've gained weight ( slightly ) since Crohn's which seems to be the opposite of what I've been reading.

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SECOND2 Posts: 33
3/8/13 8:22 P

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Hi GENEVIE5,
I'm new to the group but have been on Remicade for three years now. I totally understand your nervousness, it's a serious drug but the results can be pretty amazing.

Within three days of starting Remicade the daily rectal bleeding I had for five years stopped and never returned. I haven't had any perianal abscesses since then either. I'm not in remission but it's a huge improvement from before.

If your doctor hasn't already prescribed it, I recommend you ask about taking benedryl as a premed. It makes you sleepy during the infusion but it makes a big difference in whether you have reactions. Some people (including me) have some joint pain during and for a few days after. With trial and error with the nurses who handle my infusion, I've found that taking tylenol and have an extra bag of fluid beforehand makes all the difference.

There is a very small but increased risk of lymphoma when you take Remicade so regular blood work (every couple of months for me) is important. I just went through a scare with some bad blood work results recently and while everything turns out to be fine, my biggest worry was having to stop the Remicade. I'd hate to have to go back to the way I was before I started.

Like someone else said, it takes awhile so you might want to bring something to read, drink and eat.

I hope I haven't scared you. It's made an overwhelmingly difference in my quality of life. Feel free to ask me any questions or concerns you have.

-Kathy



-Kathy


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MLPHOWER1's Photo MLPHOWER1 Posts: 770
3/4/13 11:39 A

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I completely understand.

My coworker who takes the Remicade used to take Humira several years ago. I find it very comforting to be able to ask questions about his Humira experiences without having to call a doctor or pharmacist. And while I love my doctor, sometimes it is more helpful to ask someone who has actually taken the drug and has an immune problem a question about their personal experience.

People with immune problems, like us, have to stick together.

~ Michelle H



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GENEVIE5's Photo GENEVIE5 Posts: 3,181
3/4/13 10:59 A

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It does help. Thank you! I also have Arthritis and suspect that it will help me there as well. This all new to me so I am kind of nervous. All this information does help a great deal. Knowing my body/ immune system, I too have a feeling that I will be tired after the treatment.

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MLPHOWER1's Photo MLPHOWER1 Posts: 770
3/4/13 10:37 A

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I have never taken it. I am on Humira (a similar drug), and love it.

My coworker takes Remicade. He loves it. He uses it for RA and he could barely walk before Remicade. Now he is very active.

He said the only side effect he notices is that his is tired for about 24 hours after his infusion.

He said the infusion takes a while so he watches TV and eats a snack during it.

I hope it helps!

~ Michelle H



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PAINTEDPONY2's Photo PAINTEDPONY2 Posts: 11
3/3/13 11:30 A

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Hello,

My Doctor tried me on Remicade after my second surgery just over 2 years ago. I didn't have any problems during the infusion, but five days later I had what my Doctor called a text book allergic reaction to it. I ended up back in the hospital for 3 days and all the Doctors from the GI department came to see me. They all kept saying they hadn't ever seen a 'text book' case before. Of course that doesn't happen to everybody and I would like to state that I have a high sensitivity to many drugs which has been difficult for me and my GI. The scariest part about the whole thing was that I didn't realize I was having the allergic reaction. I just though I had come down with the flu and then I guess after that I wasn't really thinking straight anymore. When my husband got home from work he immediately knew something was wrong.

I'm not telling you my story to scare you. There are many people who are on Remicade and it is working it's magic for them. Just be aware of the facts and your symptoms. My Doctor finally convinced me to try Humira, I was really nervous to try something again, but all is well and I'm glad I did it.

So really, you won't know until you try. Good luck and I hope it all goes really well and that it gives you relief from your symptoms.

Sheila

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SLIMMERKIWI's Photo SLIMMERKIWI Posts: 35,545
3/2/13 6:31 P

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I can't help you in that respect - my husband never went on it!

Good luck for finding what you are wanting.
Kris

Co-Moderator Dealing with Depression
www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=953


Team Leader Essential Tremors :-) (Benign and Familial) www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=30225


Co-Leader Crohn's Can't Stop Me
www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=17464


I am not a Dr - please check with your qualified Health Professional for a diagnosis and treatment plan


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GENEVIE5's Photo GENEVIE5 Posts: 3,181
3/2/13 6:14 P

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Thanks. I have read up on it already but was wondering if anyone had anything to share while taking it. Real life experiences that are not on the website ( so to speak ).

Thanks again!

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SLIMMERKIWI's Photo SLIMMERKIWI Posts: 35,545
3/2/13 5:22 P

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Below is a link to the "Remicade Home" PDF format for the medication:
www.remicade.com/remicade/assets/med
_g
uide.pdf


I hope that it is helpful!
Kris

Co-Moderator Dealing with Depression
www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=953


Team Leader Essential Tremors :-) (Benign and Familial) www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=30225


Co-Leader Crohn's Can't Stop Me
www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=17464


I am not a Dr - please check with your qualified Health Professional for a diagnosis and treatment plan


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CAPTHAMMER's Photo CAPTHAMMER Posts: 4,174
3/2/13 1:26 P

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GENEVIE5 posted this on another thread and I think the question deserves its own thread.

emoticon
I just found out I will be on Remicade. Does anyone have any advice/ warnings/ side-effects experiences?

Thanks so much!
emoticon

Anyone here have any advice or comments?


Edited by: CAPTHAMMER at: 3/2/2013 (13:28)
Tomi from Vancouver USA (WA)
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