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


 
01-29-2014, 05:20 PM   #3001
kristihelene
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Nini - I too take Remicade (going on 5 yrs) and recently added methotrexate - I have to say I definitely have side effects w/ the methotrexate but hoping the combo does the trick!


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~Kristi~

Crohn's :: 2007

Current Status: Lots of pain and not unable to work
Surgeries:
* 2007 & 2011 ~ Open Small bowel resections
* 2013 & 2014 ~ adhesion lyses and endometriosis cauterization

Current IBD Tx:
* Remicade IV every 6 wks
* Methotrexate injections weekly
* Zofran before every meal and bed
* Vit B-12 injections monthly

Because having Crohn's isn't enough...
Dx: Inflammatory Arthritis, Migraines, Endometriosis, Excessive Daytime Sleepiness, & Fibromyalgia
01-29-2014, 05:59 PM   #3002
JudithC
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Join Date: May 2011
Location: Maine

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Nini..........my BC/BS pays for my Remi every 5 weeks, but I also have Medicare that is primary. The talk around this part of the country is going towards cannabis, and it seems to help a lot of people. I'm kind of ok on my meds for now, but am watching the research being done on medical marijuana, and won't hesitate if the Remi stops working. Medically it is legal in my State, I don't know about Florida. Hope you feel better soon.
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Judy

now:
Remicade
Vitamin D
Vitamin C


tried:
Entocort
Pentasa
Prednisone
01-29-2014, 07:35 PM   #3003
Maxwelljax
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Had my second infusion of Remi Monday, slept all day yesterday, today I have to say I feel pretty good. Went to work, plenty of energy, still have a bit of a headache. Most importantly joint pain minimal with Tylenol only and I think, although Im afraid to say it, fistula is smaller! No drainage and no pain!!
01-29-2014, 07:39 PM   #3004
carrollco
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Location: Grass Valley, California

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Yay Maxwell!

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Louann
First diagnosed 12/4/10
Humira 4/7/11 and lovin' it


Previous Meds:

Methotrexate--had kidney/liver damage
Lialda--allergic to aspirin--but didn't know until my Crohn's got much worse.
Prednisone--only when I have to!
01-29-2014, 11:54 PM   #3005
Write2bheard
 
Join Date: Dec 2013
Location: Federalsburg, Maryland

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So glad Remi working for you guys. Been on it a year now and not in remission but doing much better than without it. Definitely solved my fistula issues. Doc just added Enticort to see if that helps. Setting up consult with IBD Clinic at University of Maryland Hospital to get their input. Taking Topamax for headaches, but also experiencing joint pain and memory fog still.


01-30-2014, 12:11 AM   #3006
Maxwelljax
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Hang in there and don't give up. A year ago I thought life would never be normal again. Entocort took care of a lot of my symptoms. All but fistula and joint pain. Remi will hopefully help that. Just have to keep at it til they figure out the right combination. Stay strong.
01-30-2014, 12:17 AM   #3007
kristihelene
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I haven't found any med to help with the memory issues - So currently seeing a cognitive behavioral counselor who is helping me with memory strategies. It was becoming a true problem in my marriage, so I'm glad to have some concrete strategies in place!!


01-30-2014, 04:10 PM   #3008
nini_mini
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Location: zephyrhills, Florida

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Kristi- I hope it works for you too. Im really tired, joints are killing me yada yada. I hope it works for me too! Oh and my rheumy said he has no problem writing the port but he said he usually only does it if they cant get an iv in. And he said since my immune system is now tanked it would be easy to get an infection from it since its a plastic and metal thing living in my body haha. He told me to really think about it. And if I still want it hell sign off on it. Lol guess ill have to think!

@judithc- you lucky dog lol he said if it was up to him he would bump it to every 5 weeks but he said he cant so I have to deal with 8. Im waiting to hear back from the ssi people for disability and medicare as a supplement insurance company. I wish you luck with the cannabis. If you choose that. My mom wants me to try it but I dont really want to lol. Not my thing.

@max- yay!! Im happy you have energy after two days. And that your joint pain is taken care of by Tylenol! Thats awesome. Im taking gnarly stuff for mine like half an oxy because everything is hurting like you wouldnt believe. Lol im also really glad about your fistula. Thats really awesome. I really hated mine. And im glad its gone. Hoping yours clears up fast!

@write2bheard- im on it and not in remission either. No where close to it. But I know if I wasnt on remi id be worse. Im also on entocort. (Love it!) Its really great. The remi fixed my fistula issues too. It seems to work really well for that. I hope you find a combo of things to help you get better. Its a challenge but being sick takes a toll after awhile. can i ask what topamax is? And joint pain is a toughy and memory fog, I haven't found anything for that either lol.
__________________
Name: Nina
Crohn's Dx: april 2012
Symptoms: since Jan. 07'
Surgery on 11/6/13. Open/emerg.bowel resection, closed up with glue!
Current meds: oxycodone for pain 5-325, zofran 4mg prn, phenergan 25mg prn, remi 5mg every 8 weeks -_- boo!
Currently: "dying" from searing hot razors and a stabbing vice grip on both sides of my colon
01-30-2014, 04:17 PM   #3009
Write2bheard
 
Join Date: Dec 2013
Location: Federalsburg, Maryland

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Topamax is for migraines.


01-30-2014, 04:29 PM   #3010
kristihelene
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@nini - yes I understand the concern with infection! I'm on remicade and methotrexate so I too have no immune system!! As for the port, once it's fully healed the only infection risk is when they needle in, which is done as a sterile procedure anyway. I wouldn't recommend the port tho unless you really need it!!


01-30-2014, 04:39 PM   #3011
nini_mini
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High five for the no immune system club lmao amd yeah I hear ya. Im sick of fighting to get ivs and bloodwork and when in the hospital going through ivs like water because they leak really fast or infiltrate or blow trying to get them. Its very painful needless to say. He understands that but hes still concerned giving me one just because yes they try a thousand times to get an iv they do end up getting one. So I guess ill wait it out. And ponder it. Lol it just seems easier and a non hassle to have have one you know?
01-30-2014, 04:59 PM   #3012
kristihelene
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Nini - I was 100% in same boat - and my thought was this - we struggle enough with all the pain and hassle of crohn's, why suffer with pain and hassle with IVs if that's something I can control?


01-30-2014, 05:12 PM   #3013
nini_mini
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Those are my exact thoughts lol I need something I can control
02-01-2014, 12:20 PM   #3014
Gmama
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Location: Pennsylvania

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We have completed the 3 loading doses of Remi for my son & are now waiting out the first 8 week maintenance dose. Too long of a story but the ins co won't let us bump up the dose because it's our first 8 weeks...BS...but whatever.
At 4 weeks it was like flipping a light switch and he went from being ok to being in an awful flare. This literally happened overnight. (They started him on prednisone...waiting to see if that works)
Was wondering if this happened this way to any of you?
And what got you on track, increasing the dose, shortening the interval, or both?
__________________
Ginger
mom to LJ 16 (dx 12)
Prednisone 1-30-14 to 10-14
Current meds
Pentasa
Folic acid
Iron
Methotrexate
Back on Humira 8/22/14
Failed
Remicade 11/22/13-7/24/14
Flagyl/Cipro
Imuran
Humira 7/13-11/13)
Entocort
02-01-2014, 12:40 PM   #3015
Clash
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Gmama, my son C, was the same way. He did great during the loading doses, the turn around was truly amazing. But once we started the 8 week stretch he could only make it about six weeks. We first shortened the schedule, then we had to up the dose then finally added methotrexate. Now he goes every six weeks at the max dose and takes 7.5mg of MTX a week.
__________________
Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
02-01-2014, 01:39 PM   #3016
nini_mini
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Gmama and clash. Mine also stops working soon. It usually lasts 5 weeks or if im lucky 5 1/2, 6 but its usually around 5 after that I flare right back up. I camt move mine up because of my insurance co
But I had the dose doubled to 10mg which hasnt helped but what can you do
Lol I got mtx added tuesday so maybe that will make it last a little longer
I wish your kiddies the best of luck with it
02-01-2014, 05:36 PM   #3017
Gmama
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Location: Pennsylvania

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It's just so strange to me that it stops so SUDDENLY.
This is why I am always worked up...I'm in a twist on bad days because they are bad, but then I'm worked up on decent days because I'm just waiting for something suddenly to be bad! I hate the wretched disease!
I know all of you do too, of course
02-01-2014, 07:53 PM   #3018
nini_mini
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Its a guessing game for sure. It keeps you on your toes
02-01-2014, 08:56 PM   #3019
Write2bheard
 
Join Date: Dec 2013
Location: Federalsburg, Maryland

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I ended up in hospital after first 4 week dose so they doubled my dose and kept me at 4 weeks. Finally moved to 5 weeks after about 9 months but can't make it to 6 weeks. Doc just added Entocort and I'm scheduled for consult with IBD specialists at University of Maryland Medical Center to get input on a plan that might help me get to remission. Between stomach and joint pain, and memory fog and fatigue I feel like life is passing me by. Hoping they figure something out. I feel for those who have to go without treatment because of insurance restrictions. There ought to be a law against letting patients suffer to save a little money.


02-02-2014, 05:28 PM   #3020
LNS87
 
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Just scheduled my first 4 infusions. First dose will be on Valentines day - i figure its a treat to myself. I will be getting them at the hospital i work at so I will go right after I get off my shift at 8am and will most likely sleep through them since they said they will give me benadryl and tylenol pre meds. I am nervous but excited since I have been in this flare since Sept so I am crossing my fingers this is my miracle drug and I finally start to feel better. Glad to hear it has worked so well for so many of you!
__________________
Dx with UC (pancolitis) in March 2012

Currently on Remicade as of Feb 2014
Last Scope: Dec 2013, showed mild/moderate active UC
Previous Meds: Prednisone, Canasa, 6mp, Lialda, Asacol HD
02-02-2014, 05:37 PM   #3021
nini_mini
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Sending luck your way LNS87!
02-02-2014, 09:25 PM   #3022
Maxwelljax
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Completely confused by what my body is doing. Can't decide whether I am improving or not. Was better after 2nd infusion. GI said I could start cutting back on Entocort. Have been taking 6mg since Monday. Joint pain, abdominal pain, and totally constipated. Actually had to take laxative. Was really worried about possible obstruction. Went back to 9 mg of Entocort and 2 lortab today and feeling better. Very frustrated right now.
02-02-2014, 10:47 PM   #3023
nini_mini
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You just have to find the right combo for you.
02-03-2014, 08:58 AM   #3024
CLCH87
 
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Location: Orlando, Florida

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Tomorrow is my first day of Remicade... Can anyone tell me what to expect? I'm excited for the possibility of remission but very worried about the side effects. I'm also very worried about them getting an IV started, I have very small veins and they always blow. Just thinking of all the things that can go wrong I guess.
02-03-2014, 12:26 PM   #3025
Maxwelljax
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Good Luck CLCH87! I have had my first 2 infusions. I would suggest you pre-medicate with Tylenol in case of headache. They will most likely give you Benadryl when they do your infusion. Everybody seems to react differently but headaches seem pretty common from reading other posts. The best advise anyone has given me is to take a day or two off to rest afterwards. There are all kinds of other side effects that might occur from body aches to shakes but you may have no side effects at all. My first infusion mas much different than the second. I was given Solu-Medrol with the second and it helped with all the side effects. Just make sure you communicate with the nurse doing the infusion so they can get orders to give you what you need. Get comfortable and watch a movie or read a good book.
02-03-2014, 12:58 PM   #3026
Jmrogers4
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Good luck CLCH87, make sure you drink plenty of water before hand to plump up your veins, ask for pediatric needle. For my son the fatigue doesn't hit until the evening, he is bouncing off the walls until then. He has only had 2 infusions so far we go for the third loading dose this month. He had a headache with the first one and nothing the last one. He does not do any premedication. I was terrified of all the side effects before hand but it has made an amazing difference for him and so far no side effects.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
02-03-2014, 01:48 PM   #3027
rrhood1
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CLCH87 - I'm like you - small veins and they hide away when I'm under stress. My nurse suggested along with drinking water, to eat a bag of chips or something salty to help hydrate. Also I have my infusions every 8 weeks and find the 3 hours the most relaxing time. I read, snooze, watch TV and don't have to answer my cell phone or think of anything. Just make sure they infuse as per your doctors orders - they infused me once in 1 hour and I was sick as a dog. When they went back to the 3 hour infusion, I'm fine and feel good. The next day I'm Supergirl - full of energy, hungry, no pain or cramps.
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Alison

Dx: Crohns - 2010
Dx: Severe cervical spondylosis/foraminal stenosis, ruptured discs
Dx: Severe lumbar ruptured discs
Dx: thyroid cancer - 2 surgeries - done with
Rx: Remicade, Methotrexate, Lyrica, Butrans patch
Vitamin D, C, B, calcium
02-04-2014, 11:40 AM   #3028
CLCH87
 
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Location: Orlando, Florida

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Thanks everyone! I'm getting ready for my appointment now. My friend is going to drive me just in case I don't feel well afterwards. I've been drinking a lot yesterday and today to try and plump up my veins. I'm getting more and more nervous. Hope I don't ha ha!! I'll let you guys know how it goes
02-04-2014, 10:47 PM   #3029
CLCH87
 
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The infusion went well. I had one scary moment where my heart beat was in my ears and I felt so sick with a racing heart rate. They slowed the drip and it subsided. I got home and was so tired. I've slept most of the night and I'm going back to bed now. My head is pounding. And I'm sore. But it could be worse. Thanks for the support everyone
02-05-2014, 10:51 AM   #3030
Amanda89
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Had my 2nd infusion for Remicade yesterday with no side effects apart from tiredness which has carried into today including going from being too warm with hot flushes one second to being too cold the next. Still getting abdominal pain and cramping, which I'm a bit sad about as I thought I would feel a lot better today as I had after the first infusion, but I guess the difference was I was in hospital when I got the first one done and was in pretty bad shape. Got my 3rd infusion in 4 weeks time and then it'll be reviewed to see if I can continue on it, but my IBD nurse feels pretty confident that I'll get to stay on it and to be honest, I hope I get to as well as even though it's not quite kicked in yet, I feel quite confident that this is the drug thats going to push me into remission.
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Medication
Pentasa 400mg
Azathioprine 125mg
Cyclosporine

Past Medications
Prednisolone, Methotrexate oral & injections, Budesonide, Omeprazole, Asacol, Infliximabl
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