Share Facebook
Crohn's Disease Forum » Treatment » Remicade/Infliximab » Remicade Club Support Group


 
07-01-2009, 02:05 AM   #301
chefette
New Member
 
Join Date: Jun 2009
yes i have been on prednisone, but id been on it for almost 2 months, and then i didnt get the teeth thing until right after the remicade, and it got worse after my second dose. im down to one 5 mg. tab of prednisone, so i guess i will find out soon if its that or the Remi. Thanxs
07-01-2009, 07:20 AM   #302
farm
Captain Insaneo
 
farm's Avatar
 
Join Date: Jun 2009
Location: Winston Salem, North Carolina
I get my very first infusion of Remicade tomorrow. I'm kind of nervous. The lady said she will give me Tylenol and Allegra before my infusion just in case I have any kind of reaction. She said it would take about 3 hours and I may be very tired afterward. I hope this stuff works.
It's a bitter sweet feeling of excited and nervous all at the same time today.
Wish me luck!!
__________________
Have you sharted lately? (Just wait.)
07-01-2009, 07:58 AM   #303
bwightman
Member
 
bwightman's Avatar
 
Join Date: Aug 2008
Location: Massachusetts

My Support Groups:
Farm,

I know how you feel! I was excited and nervous about my first infusion on Monday, but it went really well for me. I was very relaxed and even took a nap at one point! The only side effect I've noticed so far has been fatigue. I was really tired Monday night, but I feel like my energy levels have improved since then. No fever, chills, flu-like symptoms (yet) that they say are a possibility.

I hope it goes well for you! Good luck!

Beth
07-01-2009, 09:14 AM   #304
SpoonNinja
Spoonie
 
SpoonNinja's Avatar
 
Join Date: Apr 2009
Location: Michigan

My Support Groups:
ok everything is set for me ^-^ i start it on july 13th at 1pm they said they will do it in the drs office so i wont have to go to the hospy for it!
__________________
Tabathe Williams
dx Crohn's Disease, november 2007
meds: Remicade
be a ninja they have fun and get to randomly run around doing missions!! but beware of pirates theyre the ENEMY!!
Yahoo: [email protected]
Facebook: Tabathe Rammstein Obsessed Williams
07-01-2009, 09:40 AM   #305
farm
Captain Insaneo
 
farm's Avatar
 
Join Date: Jun 2009
Location: Winston Salem, North Carolina
Good deal Spoon. I hope it works out GREAT for you!!!!
07-02-2009, 10:06 AM   #306
farm
Captain Insaneo
 
farm's Avatar
 
Join Date: Jun 2009
Location: Winston Salem, North Carolina
Got my first Remicade today. 500ml. I feel fine. No fatigue or anything.
I was a bit surprised to find out where remicade derived from.
07-02-2009, 10:10 AM   #307
danman
Senior Member
 
danman's Avatar
 
Join Date: Sep 2008
Freaky eh?
07-02-2009, 02:53 PM   #308
SpoonNinja
Spoonie
 
SpoonNinja's Avatar
 
Join Date: Apr 2009
Location: Michigan

My Support Groups:
whats it deirved from? my mom had a med that was for her diabetis that was made from lizzard spit! it was weired
07-02-2009, 03:13 PM   #309
katiesue1506
Senior Member
 
Join Date: Nov 2006
Remicade is a chimeric med... meaning its made with mouse proteins.

Humira on the otherhand is basically the same as Remicade with human proteins, so theres less chance of a reaction to it.
07-03-2009, 12:53 PM   #310
SpoonNinja
Spoonie
 
SpoonNinja's Avatar
 
Join Date: Apr 2009
Location: Michigan

My Support Groups:
i just thought of something, when i start remicade like the day of the infusion and afterwards, will i still have to take my pentasa? they said they would stop my pred, but will they stop my pentasa too, or should i stop now to let it get out of my system before i start the remicade? i would ask my dr but he is in spain running with the bulls! (more like thining of the heard lol!) but im just not sure what is up with the pentasa, so if someone could tell me what will happen with that i would be grateful!! XP
07-03-2009, 05:20 PM   #311
farm
Captain Insaneo
 
farm's Avatar
 
Join Date: Jun 2009
Location: Winston Salem, North Carolina
I am supposed to continue my pentasa and taper down and stop the predisone. I would not stop taking the pentasa.

I did end up getting pretty fatigued yesterday evening.

Yeah, um, mouse proteins. I could save a ton of money and start eating mice eh??
07-04-2009, 04:53 PM   #312
AvsGuitarist
Member
 
AvsGuitarist's Avatar
 
Join Date: Jun 2009
Did anyone have a severe asthma attack after taking this stuff? I did. I want to say it was the mouse DNA cause I'm a very allergic kid but I can't be sure.

I'm so glad I'm not taking it anymore. I felt better a week after but 3 weeks in it felt like it even made my symptoms worsen.
__________________
Diagnosed with Crohn's in July 2007, Asthma all my life - Improving!
CrossFit Enthusiast/SCD Diet Follower -- Severe Peanut Allergy, Lactose Intolerant, Soy/Nut Sensitivity
Status: Close To Remission!

Drugs, Vitamins/Day:
-4.5mg LDN
-Completed Rifaximin Treatment (1 Pill - 3x/DAY) + SCD Yogurt Probiotic
-5000mg EPA Fish Oil, -1,000 IU D3, -1mL B12 (Self-Injected Shots)


GO AVS
07-05-2009, 07:24 PM   #313
farm
Captain Insaneo
 
farm's Avatar
 
Join Date: Jun 2009
Location: Winston Salem, North Carolina
Well I was hoping for a miracle after my first infusion, however I haven't felt any effects of it yet. I'm hoping my next infusion really rocks my world and puts this beast back in remission.
07-06-2009, 11:04 AM   #314
SpoonNinja
Spoonie
 
SpoonNinja's Avatar
 
Join Date: Apr 2009
Location: Michigan

My Support Groups:
yea i cant wait for my first dose, im going to get my tb test today at 3 and my first infusion is the 13th! it kinda sucks tho that i will have to still take all thoes pentasa, i was hoping i wouldnt have to take ne oral meds with getting the remicade, but i guess that would be to much to ask for lol!XP
07-09-2009, 04:01 PM   #315
Creepy Lurker
Senior Member
 
Creepy Lurker's Avatar
 
Join Date: Jun 2007
I developed joint pain over the last week, so I rang the hospital to check my blood results.

Haemoglobins are going up. Inflammatory markers are going down. Looks like it's actually working.

I suppose I can live with a bit of (minor) joint pain.
__________________
...
07-10-2009, 09:43 PM   #316
SpoonNinja
Spoonie
 
SpoonNinja's Avatar
 
Join Date: Apr 2009
Location: Michigan

My Support Groups:
thats good, but they should still give you something for the joint pain...oh well drs what can you do....
07-11-2009, 02:24 PM   #317
Jetstreem
New Member
 
Join Date: Jul 2009
I have been on Remicade (known as Infliximab over here) since the end of December 2007. It has worked wonders for me.

I am on no other medication alongside the remicade, was supposed to be on Imuran and Pentasa, but I asked if I could see how I went without them as I was sick of taking tablets that made me feel yucky after being on Methotrexate for so long. The Pentasa were also giving me crazy hallucinatory dreams for some reason!

I get mine given in over one hour now so it is over very quickly, and I am very lucky to have suffered no side effects. The only thing that happens is about 15mins into the infusion my blood pressure drops quite a bit and I feel drowsy, and just feel a little drowsy for the rest of the day. Nothing drastic though.

It is a fabulous drug and although I go for my infusion every 8 weeks at the moment I do get a really good 5-6 weeks of feeling ''normal'' the remainder few weeks I do start to feel pretty exhausted.

All in all it is a massive thumbs up to Remicade from me!
__________________
Tender is the day the demons go away...
07-12-2009, 07:41 PM   #318
SpoonNinja
Spoonie
 
SpoonNinja's Avatar
 
Join Date: Apr 2009
Location: Michigan

My Support Groups:
im nervious and excited at the same time, i go tommarow for my first dose, so im not sure what will happen, hopefully nuthing, im having it in my drs office not the hospital. i will try and get on after its all done to let you all no how it goes!! ^-^
07-13-2009, 11:21 PM   #319
Naps22
 
Anyone ever quit remicade cold turkey and what were your side effects? I quit back in November and at around 5 months or so being remicade free I started to get night sweats (physical dependancy) and excruciating lower back pain.
07-14-2009, 09:22 AM   #320
SpoonNinja
Spoonie
 
SpoonNinja's Avatar
 
Join Date: Apr 2009
Location: Michigan

My Support Groups:
wo0t! i got it done with nothing happening! but there was a horribly boring room. your alone with the dr the whole time and noone else. so im hopeing to get some money b4 my next appt so i can buy some books! so yea im happy it went good she messed up the iv tho but oh well everyone does on me! ^.-
07-14-2009, 11:47 AM   #321
farm
Captain Insaneo
 
farm's Avatar
 
Join Date: Jun 2009
Location: Winston Salem, North Carolina
Good deal spoon. Glad it went well.
07-14-2009, 01:15 PM   #322
jamie2462
Senior Member
 
Join Date: Feb 2009
had my 5th treatment and they were so busy @ the clinic that they couldnt wait to ship me out of there and free up my chair. I guess that makes me an old hand at it now? Even tho its only been 5 treatments. :P

I just wanna get off the other drugs and stick with the remicade,...its the only one that really seems to make a difference anyways...well...not forgetting my vitamin supplements which help me to keep my energy levels up.
__________________
Much Love.
~Jamie~

Reiki Level 1 -- Level 2 on Nov. 22nd Yay!!


Facebook: http://www.facebook.com/home.php#/pr...p?id=504306512
07-22-2009, 01:51 PM   #323
davek
New Member
 
Join Date: Apr 2009
I started on remicade infusions about 3 weeks ago now. I had one at the start of July and my 2nd one last week. My 3rd infusion is scheduled a month later in mid-August.

I'm not feeling any side effects really and I'm posting because I want to get my ears pierced and hair colored and I'm worried if that's impossible when I'm on remicade because they warn you about open wounds and infections and I always hear about piercings have the potential to get infected.

I've never gotten a piercing before, so I was wondering if anyone hear has gotten their ears pierced while on remicade and if it was ok?

Same question for tattoos as well (not planning on getting one, but who knows!)

Thanks,
07-22-2009, 01:59 PM   #324
~TN~
Member
 
~TN~'s Avatar
 
Join Date: Jan 2009
I have had 2 tattoos while on remicade with no infections.
__________________
I rather be skiing.
07-22-2009, 02:16 PM   #325
katiesue1506
Senior Member
 
Join Date: Nov 2006
Be careful with the piercings... I have my belly button pierced (got it done at 16 before I was even diagnosed) and if your body doesnt respond well to foreign metals, you will have an issue. I was a normal healthy girl and it got infected for about four or five months... it finally healed up and I don't even remember I have it now, but I knew I had a nickel allergy and I went and did it anyhow. Being on Remicade, I can only imagine, would make it wayyy worse.

My ears get infected sometimes if I mess with my earrings too much or if I don't put in hypoallergenic studs.

Like I said though, now that my body is used to the pole in my belly button, I don't have any problems with it.

Just be careful because piercings tend to be a whole different game than tattoos.
07-22-2009, 10:39 PM   #326
RHOV
Senior Member
 
RHOV's Avatar
 
Join Date: Oct 2007
I got ear piercings while on Remicade and they took the normal time to heal (about 6 weeks). My piercings do get infected every so often and the infection takes forever to clear up, but I have 3 holes in each ear, which exacerbates the problem.

I think as long as you're extra-diligent about swabbing your piercings with the alcohol solution and make sure you put in high-quality studs, you should be fine!
07-23-2009, 11:37 AM   #327
Becky
Senior Member
 
Becky's Avatar
 
Join Date: Jul 2009
Location: St Petersburg, Florida
I got a tattoo a few months ago and it was fine.
08-03-2009, 06:08 PM   #328
My Butt Hurts
Squeals-a-lot!
 
My Butt Hurts's Avatar
 
Join Date: Aug 2007
Yippee!!!! Another Remicade infusion done!
It took them a frikin hour and 20 minutes before they even got me hooked up though, so it took 4 hours total. Why bother to pre-medicate if you're just sitting there anyways??
So then 2 blown veins later, I say "Do you want me to try the next one? I went to school for it.", just to mess with her. She got it on the third try - in the back of my hand. Not sure if it was my veins or her technique. I guess everyone can't be perfect every time sticking a vein. She had me squeeze a ball first though, and they never have done that before. I wonder if that had anything to do with it. I mean TWO blown veins? The third one she tried without a tourniquet (shut-up, you know I spell checked it, but I was only one letter off) and it worked. THEN she taped my hand so I couldn't bend my wrist, and I wanted to crack it SO badly. And THEN - in case I wasn't having enough fun - some volunteer make-up lady came around and asked if I needed some pampering. Ha! Get away from me lady!! I finally agreed to some hand lotion and told her I was going to take a nap. She had telemarketer written all over her. She patted my legs and told me to have a blessed day, grrr. It was blessed until she got there...
There is never a dull moment at that place I swear - but I would go once a week as long as I feel good! ILOVEYOUREMICADE!!! Next infusion 9/28/09 - can't wait - not kidding.
08-03-2009, 07:28 PM   #329
RHOV
Senior Member
 
RHOV's Avatar
 
Join Date: Oct 2007
can you send the make-up lady to my next infusion? all i ever get are weird guys with guitars and funny hats.
08-03-2009, 07:57 PM   #330
katiesue1506
Senior Member
 
Join Date: Nov 2006
Make up ladies and guys with guitars and funny hats?!

All I ever got was DORIS.

I think I kinda liked the one they put in the back of my hand... I felt free-er.
Reply

Crohn's Disease Forum » Treatment » Remicade/Infliximab » Remicade Club Support Group
Thread Tools


All times are GMT -5. The time now is 02:45 PM.
Copyright 2006-2017 Crohnsforum.com