Starting Remicade - Recently diagnosed again…

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Darthjr
New Member


Date Joined Sep 2009
Total Posts : 3
   Posted 9/24/2009 12:10 PM (GMT -7)   
Hey Everyone,
I had UC for the first half of my life before it went into remission when I was 18. Recently, in the last 2 years (now 33), I started having issues again. I have now graduated to Crohn's :)

I have a mild case, in comparison to what is possible. I have to say dealing with this again isn't fun, so much has changed both with me and the science. Oh and it turns out I have Osteoporosis (diagnosed 2 weeks ago), no more steroids I guess?

Here is the Question, what can I expect from the Remicade? I am little freaked out by 3 IV, how is it?

What about support groups? Books? I really need some help with dealing with this...


Thanks
T

Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 9/24/2009 1:06 PM (GMT -7)   
Hi Darthjr,

I was recently diagnosed and started Remicade the end of July. Before the Remicade when they initially diagnosed me, they put me on Prednisone and Asulfasalazine, but it didn't help much and I started to get worse. I was out of work for a month and in and out of the hospital. Finally my GI suggested I try Remicade. I was really nervous, mostly about the possible side effects, but I wanted to get my life back, so I opted to try it.

Keep in mind that Remicade can react differently for everyone. My GI said it works for about 40-60% of people. I did my first infusion in the hospital and honestly started feeling better by the next day, although not 100%. I had formed stools in about 2 days. I had really bad migratory arthritis in my ankles that went away within the first week of the infusion.

As much as I am afraid of meds, it did help me to get my life back and feel like myself again. I thankfully am in remission right now and have no symptoms.

I'm not sure what the 3 IV means, but the infusion really wasn't a big deal with me since I didn't have an allergic reaction. They usually have you take a Tylenol PM (or Tylenol and Benadryl) an hour before the infusion to prevent fevers and allergic reactions. They will start you out on a low dose and then gradually up your dose as the time goes by. You'll be constantly monitored by a nurse to check your temperature and blood pressure.

I don't know about any support groups or books, but you should get a booklet about Remicade from your doctor. I read over it while I was in the hospital. It also came with a DVD, but I haven't checked it out.

I hope that helps. I've had really good luck with it and hope that it continues to work for me. I hope you do well with the Remicade.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/24/2009 1:30 PM (GMT -7)   
If you look in our Crohns resources thread above you will find a link by Ivy6 about our different medications and others experiences with them.

Many have had great luck with Remicade and it has helped to put their disease in remission. Also we are a peer support forum, giving and receiving support, and all living with Crohns. Ask any questions you might have, we will be glad to share our experiences with you. Good luck!

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Darthjr
New Member


Date Joined Sep 2009
Total Posts : 3
   Posted 9/24/2009 2:03 PM (GMT -7)   
Thanks :)

isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 9/24/2009 2:23 PM (GMT -7)   
Remicade works wonders for some people so lets just hope it does the same for you ;)

I have been getting remicade every 8 weeks and it has just recently started to work very well for me.

I was very stressed about the side affects for the first tree times so I asked for something relaxing and it helped so much

good luck I hope remicade helps you
24 year old female
Diagnosed with :
Endometriosis march 2007
Anxiety disorder august 2007
Crohn's disease in December 2008 Then they changed it to UC in June 2009.
and Autoimmune Hepeatitis in July 2009


Medication - Asacol, Remicade, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 9/24/2009 3:10 PM (GMT -7)   
I've had 3 infusions, and I think I'm starting to feel it working for me. Getting the infusion isn't really bad, ti's basically just a normal IV. Takes around 2 hours (kinda depends on the person), the Benadryl I get beforehand makes me sleepy so I usually sleep for the vast majority of the time. It sure isn't cheap, around $7k for each time, but finding relief is priceless.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.

Amor fati - Nietzsche


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 9/24/2009 9:17 PM (GMT -7)   
expect...to feel amazing..its good stuff...though their is a risk of being allergic..it doesn't mean that you will be..they take precautions..and watch you as they slowly increase the speed...i am on it..one dose..and i feel better than i ever have..the IV is not bad..its just a simple iv...and it takes a while..its not bad at all.....:)

 Crohn's anal fistula Lupus Hyperthyroid..Pentasa Remicade

 


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 9/24/2009 9:19 PM (GMT -7)   
also..after i had the Remicade..i have to tell...you i now have formed stools..and i can eat..whatever i want..in fact i pushed it and i ate alot of fiber..yummy granola and stuff..and i was fine the next day..no D...so please don't worry be hopeful!

 Crohn's anal fistula Lupus Hyperthyroid..Pentasa Remicade

 


Darthjr
New Member


Date Joined Sep 2009
Total Posts : 3
   Posted 9/25/2009 6:03 AM (GMT -7)   
That is great to hear, I cannot wait.

Dunchad
Regular Member


Date Joined Sep 2009
Total Posts : 36
   Posted 9/25/2009 9:34 AM (GMT -7)   
Worked great for me. One hr into it I started to feel better.
Remicade 6mp monthly b12.


Shynz
Regular Member


Date Joined Aug 2008
Total Posts : 37
   Posted 9/25/2009 10:31 AM (GMT -7)   
I am also on Remicade, I will be going for my 5th Infusion this October. Being on remicade has improved my crohn's I couldn't ask for anything else. It has been working great. I believe in just staying positive, and knowing that your not alone! I wish you the best of luck with starting Remicade Darthjr.
20/f - Diagnosed with Crohn's for 6 years. ~ Waiting to backpack through Europe ~
Western Medication - Imuran & Entocourt
Currently on Remicade (First Infusion January 26th/09 - Next Infusion Oct 8/09)
Natural Medication - Probiotics
L-Glutamine
Chinese Herbs for Inflammation
Acupuncture

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