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Crohn's Disease Forum

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Remicade for about a year. Every 8 weeks. I take it in-patient with Benedryl and usually take a 2 hour nap while it's dripping.
 
maykel said:
I had my 3rd remicade treatment about 10 days ago and it hasn’t helped at all.

I called my doctor and told him how I was feeling so he prescribed me antibiotics and ran a CT scan. CT showed my small/large intestine was inflamed but no blockage. I can’t find anything to help control my diarrhea.

I am averaging 5-6 bowel movements per day and it is exhausting. The only thing to date that has worked has been some pain meds which suppress/relax the gut.

Any insight on what else i can try? i even did a gluten-free diet for 6 months along with a ton of natural supplements.
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That's about how much I go. It's a huge improvement from the 15-20/day, so I'm grateful for that. But the Remicade just hasn't quite gotten me into remission. I'm also on imuran, lialda, vsl3 and immodium. I've had 5 infusions.
 
Having my first go on tuesday ... not too worried, yet ! :)


Ok so I had my first infusion today, just sat in a chair while he nice nurses brought me no end of tea and biscuits.
All went fine and I feel perfectly normal so far (so good). :ysmile:
 
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Had my first infusion of remicade today. They checked my temp and bp every 15 minutes

Had my first infusion of remicade today. They checked my temp and bp every 15 minutes. No instant feeling of energy or healing yet. My bleeding even even seems a little worse today but it could be from sitting on by but for too long today. I;m keeping my fingers crossed for good luck and speedy healing. Like another member they even offered me a snack! The only negative was seeing the people in worse shape than me although it certainly reminds me how lucky I am.:allright::allright::allright:
 
cmichael - Good luck! Some people can feel a difference in their symptoms after the first few days, but for most it usually happens around the third dose or so. Hope it helps for you!
 
My next remi is Friday and then the next one is Oct 19 th. I don't mind the chair reclines and you are offered a snack and a heated blanket. The nurses in the remicade room are awesome. :D
 
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My son is 17 and in remission after 6 doses of Remicade. He is so so exhausted after his treatments. Concern--he is having a side affect that his Pediatric GI says he has never heard of-his first treatment he had pain up his arm, the next treatment the pain went up his arm to his neck. At yesterday's treatment he had pain in his legs (its not muscle spasms but he complains about it being deeper in his "veins"). He had trouble sleeping all last night-said he felt his heart beating throughout his whole body and veins. Anyone ever had this happen? Thank you.
 
Hello everyone, will be starting remicade again very soon,
Just had a resection july23/12 now I have a post surgery infection and am hooked up to a vac system, unable to start remicade until the wound is closed, hopping that will happen soon....anything I can do before starting that might help?
 
cmichael said:
The only negative was seeing the people in worse shape than me although it certainly reminds me how lucky I am.:allright::allright::allright:
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I had my second infusion today , it all went well again , but I did have the pleasure of sharing my room with a couple of people who insisted on swapping really scary horror stories about the ops ect they had been through. ( It all seemed like a game of top trumps - but I know we all have different ways of coping with stuff, maybe that is theirs ).

I also know everyone is different so those things may never happen to me , but I must admit I had a awful "this could be me in a few years time" moment .

:thumbdown:
 
Hi, I have been on Infliximab(Remecaid) with Azathioprine for about a year now and although the Crohns symptoms are under control i am finding that i get infections really easily and really regularly. I am on some strong antibiotics at the moment for tonsilitis and sinus infection but even with these it will take several weeks for the infection to clear. has anyone else experienced this? I've also developed pain in my wrists and can't put any weight on my wrists at all - anyone else had this?? My GP and consultant are being very slow about responding to my concerns so getting a bit frustrated!!
 
Im having my 1st infusion of Infliximab tomorrow :) dont know wether to be excited or scared its been a long time coming for me.
 
Hi laurajh, definitely don't be scared the infusion doesn't hurt at all, in fact it's really nice to have a couple of hours doing nothing! I take my kindle and read,but there is usually a telly and of course the other people having infusions to talk to. don't expect immediate results, it took til the third infusion for me to feel the benefits but once it does kick in it will sort out the tiredness, diarrohea, cramping pains etc. The only thing I have noticed is that I get infections more easily and you do have to do something about them straight away because your immune system isn't go to do it for you-you will be offered a flu jab so take it! hope all goes well for you!
 
Hi thanks cansi1 I soooo can not wait for those benefits :) forgotten what it feels like now. Will let you know how it goes.
 
Hi everyone! I'd like to join.

I get my third dose of Remicade on Monday, which also happens to be my birthday!

I got my first one while being treated in the hospital for a really bad flare up and then I got my second one two weeks after that. I'm on a 2,4,6 then we'll see schedule.

I took Claritan, Tylenol and Solumedrol as pre-meds. The infusion is a breeze for me, don't get tired or anything like that. After my first infusion, I still had some nasty symptoms, a handful of bloody bowel movements and such for a handful of days. And after my second infusion, I noticed some mild stomach pain and one instance of diarrhea, but other than that, everything is back to normal, well, as close to normal as can be.

I have a question: Does anyone eat whatever they want? And if so, how soon after your first few infusions did you start eating that way? I'm not planning on eating whatever I want, but I'm anxious to add new foods into my diet. I'm still on a low residue diet, although I'm adding new things in very very slowly. I have noticed that the more spices or flavor a food has, the more it seems to bother me.
 
Hi Niklovely, I'm still very careful about my diet and my tummy certainly lets me know if it disapproves. But now I can eat almost normally, still no raw fruits or vegetables, but can manage all other foods quite well. I'm French and love to cook with onions but Ohhhh they do give me awful gas for a few days. I am now recognizing most of my sensitive foods and it's been nearly 6 months on Remicade for me. Yes, you will be able to add new foods slowly, just keep notes on which ones bother you so you can stay away from that for a while. Good luck Glad to hear the infusions are going well.
 
JudithC said:
Hi Niklovely, I'm still very careful about my diet and my tummy certainly lets me know if it disapproves. But now I can eat almost normally, still no raw fruits or vegetables, but can manage all other foods quite well. I'm French and love to cook with onions but Ohhhh they do give me awful gas for a few days. I am now recognizing most of my sensitive foods and it's been nearly 6 months on Remicade for me. Yes, you will be able to add new foods slowly, just keep notes on which ones bother you so you can stay away from that for a while. Good luck Glad to hear the infusions are going well.
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Thanks Judith for your info. Are you able to eat cooked vegetables? I'd love to be able to eat raw fruits and veggies since that's what my diet consisted of before getting dx'd with Crohn's.
 
Yes Nik, I do eat cooked vegetables, but am careful about items with a skin, such as peas. It seems in small amounts it's ok. Careful though, through this chat area I've learned that each of us has a tummy that deals with Crohn's in it's own individual way.
 
I have my second infusion this Thursday. Looking forward to it actually. With how well the first infusion helped, I am just hoping everything stays the same after the 2nd.
 
JudithC said:
Yes Nik, I do eat cooked vegetables, but am careful about items with a skin, such as peas. It seems in small amounts it's ok. Careful though, through this chat area I've learned that each of us has a tummy that deals with Crohn's in it's own individual way.
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You are definitely right, it does seem everyone reacts differently to things.

I just don't know where to begin to add new foods. Should I add new low residue things or try to add cooked veggies? What veggies? I'm so confused.
 
I'm smiling Nik, because I think the confusion is part of the illness, at least it is for me. Good grief, where do we turn next? Perhaps you should call your Dr. and ask if he/she thinks you're ready to add other items to your diet. Carrots and asparagus are some of my favorites and do ok with me. Just make sure they are very well done.

There is a section in this forum that deals with food and diets. Go ahead and take a peek there. You may find some interesting information in that area.

All the people here are just so great at helping each other out. Glad you found us.
 
JudithC said:
I'm smiling Nik, because I think the confusion is part of the illness, at least it is for me. Good grief, where do we turn next? Perhaps you should call your Dr. and ask if he/she thinks you're ready to add other items to your diet. Carrots and asparagus are some of my favorites and do ok with me. Just make sure they are very well done.

There is a section in this forum that deals with food and diets. Go ahead and take a peek there. You may find some interesting information in that area.

All the people here are just so great at helping each other out. Glad you found us.
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:)

My doctor said I should be ready to add new things after my second remicade infusion and that was 8/13. But when I asked him what I could add, he said to start with a salad and to stay away from dairy for now.

I have checked the section you are referring to and there is a wealth of information there and I even posted a thread awhile back asking for some advice in relation to this matter but it seem as though I got a lot of answers suggesting low residue food items. I thought I would post here since there are remicade users here and I'd like to see what and how other remicade users eat.
 
Wow, Salads? Really? I haven't had but a few bites of salad in a very long time. I suppose I'm just scared to try it at this point.

Seafood is good with me, almost any kind, but not fried. And chicken is not a problem at all. Your Dr. is right about the dairy, but it doesn't keep me away from my ice cream, just in small amounts. I've learned to chew my food really well.

Tonight we're having broccoli quiche, which does have some dairy, but then again, everything in moderation.

I'm sure others will pipe in soon with their thoughts on 'good eats'.
 
JudithC said:
Wow, Salads? Really? I haven't had but a few bites of salad in a very long time. I suppose I'm just scared to try it at this point.

Seafood is good with me, almost any kind, but not fried. And chicken is not a problem at all. Your Dr. is right about the dairy, but it doesn't keep me away from my ice cream, just in small amounts. I've learned to chew my food really well.

Tonight we're having broccoli quiche, which does have some dairy, but then again, everything in moderation.

I'm sure others will pipe in soon with their thoughts on 'good eats'.
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I'm patiently waiting for responses and appreciate any that come in.

Fried foods would give me problems even before I got dx'd so I'm definitely going to stay away from those. I do fine with chicken as long as its not marinated with a lot of spices (not necessarily spicy as in hot, but a lot of spices have been added for flavor). I'm okay with seafood and turkey and just recently added pork with no problem. I'm also okay with eggs.

I had some cooked green beans yesterday too with no problem.

As far as dairy, I have stayed away from it but just learned that one of the foods I just recently added has whey in it--no problem with that so far.

Other foods I eat pretty much follow the low residue diet:bread, crackers, pasta, mashed and baked potatoes, etc.

I have not had a salad because I'm nervous to add raw veggies, even though I'd really like to.
 
hey i had my first infusion today. all went well. i had palpitations and hot flushes but nothing serious. this eve i feel really tired....yawn.

nicllovely,
when he says add foods back he means add whatever you have avoided this past while. fruit veggies salads wheat? itll be trial and error as usual but you'll get there, try 1 thing at a time so you know which food bothers you. best of luck.

Ju
 
Hey I had my 1st infusion yesterday and I was wondering if anyone has ever been in any pain afterwards because last night I couldn't sleep as my bones were aching and the same all day today especially in my upper legs, shoulders and arms. Been back for a blood test today at the hosp to check my immune system but my doc doesn't seem to know why I'm aching like this. Any ideas? :)
 
Hi Laura, yes that has happened to me. Call you Dr. immediately and advise. My aches and pains lasted about 4 days and then eased off. Second infusion wasn't so bad, and after that I didn't have any problems at all. But my Dr. said if it had continued he would take me off Remicade.
 
2nd Remicade infusion today. It's helped so much from the first one. Has anyone experienced it gets even better after the second or does it just keep the same going forward? I will be happy either way just want to know others experience.
 
Went ahead and took the plunge today and tried some cooked carrots, celery and cabbage. I wish I wouldn't have tried 3 new foods in one sitting because it mildly upset my stomach. Now I don't know which new food caused it.

Should I try carrots tomorrow and see what happens? Then celery the next and cabbage the next?
 
LOL Nik, baby steps, baby steps. Yes try them one at a time and then see what happens. Perhaps it was the combination.
 
Hello everyone!

Ive been advised by my consultant that they are going to put me on infliximab as they have tried Imuran and 6mp which both have failed :( my body can't handle these two and i get side effects such as severe blood and diarrhea (which doesnt happen before taken these meds).

Currently on 40mg pred, which keeps things under control but everytime i go below 20mg i go get major flare ups. Been told that im now steroid 'dependant'..and keeping me at 30/40mg.

Been on ped for 4 months now..how long are people usually on pred for?

Kind of nervous going for infliximab as the GI keeps tell me that its usually the 'big bomb' and last resort.

Any advice/tips would be lovely! Thanks!
 
laurajh said:
Hey I had my 1st infusion yesterday and I was wondering if anyone has ever been in any pain afterwards because last night I couldn't sleep as my bones were aching and the same all day today especially in my upper legs, shoulders and arms. Been back for a blood test today at the hosp to check my immune system but my doc doesn't seem to know why I'm aching like this. Any ideas? :)
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hey laurajh,
i had my 1st infusion on tuesday and ive been getting sore joints too esp in the hip and shoulders. has it eased up at all?
other than that it seems to be working really well.

JU
 
sickinlk said:
hey laurajh,
i had my 1st infusion on tuesday and ive been getting sore joints too esp in the hip and shoulders. has it eased up at all?
other than that it seems to be working really well.e

JU
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you were having a lot of blood like me weren't you? Does it stop it straight away? I really hope so. The predfoam and steroids both stopped working completely since last weekend. my consultant told me to stop taking the predfoam as it would be causing damage then good since it isn't working but am on a tapering dose of the steroids cos obviously he can't take me off them all of a sudden and i'm taking them with pentasa. Very sick today 9 bloody Bms and this salty liquid coming up my mouth. I get this bad pain on left side on and off. I can't wait for monday morning to come!! I just hope my body is not going to shut down over the weekend my hg was 9.5 last friday week hope it has not gone any lower have had another week of bleeding since then. but i am staying positive about the remicade, i looked at one of the crohns patients from their website, the first girl and she sounds exactly like me, nothing stopped the bleeding and it worked for her almost straight away so fingers crossed. :dance:
 
Karj
It hasnt stopped the bleeding but it has improved so much. i only had 1 bm yesterday and it was normal except for a little blood and mucous.
im the same as you with the bleeding and nothing working so be positive. i was so skeptical that remicade would work but it has. and after the 1st infusion. who knows i could react on the next infusion but so far so good eh?
the joint pain is bothersome but it could be just from steroid use and i always had problems with my hips. sorry for waffeling. hope it goes well on monday. by the way i tried to get a monday and the nurse said its too busy plus you'll get caught for bank hols that way. so i took tuesday.

Ju
 
I was just so surprised that i got in so soon, but they were quiet for monday so jumped at the chance! i think i read that things start to improve an awful lot after about 2 weeks if it works. I am also watching diet at the moment too, and looking at taking other stuff that will try and heal me. every little helps!! i have been putting my week off to good use and doing alot of research, i love acemagic's thread on paleo been reading it all morning!
 
Im just trying to imagine being in remission. i admit that i wasnt bad up until june this year but that was hell. now im the same as i was b4 june and i could live with that.

Ju
 
sickinlk said:
hey laurajh,
i had my 1st infusion on tuesday and ive been getting sore joints too esp in the hip and shoulders. has it eased up at all?
other than that it seems to be working really well.

JU
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Hi sickinlk,
My bones are still aching not half as bad as the first few days after the infusion though! Mainly around my back. Hopefully should be gone soon, has yours eased off any?
Good news that your Crohn's symptoms are easing off, I've had no change as of yet fingers crossed the next infusion will do something :) take care!

Laura
 
just back after my first infusion. all went well, no reactions fingers and toes crossed :). i did get blurred vision just before i left so they kept me a little longer but this is the 4th time in the last 2 weeks getting that so i know it not remicade related. i think it is side effect of prednisolone.
 
Just back from my infusion too. No problems, but that needle in my hand is really starting to hurt now. It's the only place they can get veins. I sure do wish Remicade came in a pill.
 
I'm just in between infusions two and three...number three is next Friday. So far I haven't had any horrible negative side effects from the remi, but I haven't had as much progression as I had hoped for! Call me impatient, but its tough to wait for results. I've been in about a three yr flare. Two days ago I spent 12 hrs in the emergency room. They were going to admit me and put me on iv prednisone due to my inflammation levels. My original reason for going to the er was dehydration and pain. I have CD in my terminal illeum And esophagus. Its very painful when I eat or drink anything. Some days I'm lucky to get in 4-8 oz of boost plus nutrition shakes.
I've read that a lot of people on here have almost instant improvement with the drug, but not me! Lol! Its very frusterating, but when I come on here I'm able to laugh a little, smile a little, and hope just a little more! :)
I'm still looking for even one other person that suffers from crohns esophagitus, as I do, but that's starting to feel like a lost cause! My drs aren't sure what will be next for me. CD is so individualized to begin with, but having CD in my esophagus makes its that more difficult for the drs to tell me what expect next.
As I said, I do get frusterated, and my recent er trip did a little number on my spirits, but it is normal for it to take up to your third infusion to start to feel results, right...?!!
 
I had my 4th infusion today.

I am guessing I am somewhat better. I too was hoping for a bigger relief!

My Dr does not want to change meds or add anything for another 2-6 months.

And all I can think is AWSOME! I love a challenge!! NOT! I want to feel well again and I want it to happen soon! Whew, thanks for listening!


Lauren
 
my doctor told me yesterday that it seems to work different for everyone and it can be the 4th infusion before people really start to see the effects. the nurse also said this so don't despair yet :).

I am seeing an improvement straight away but that is because my problem was constant bleeding. nothing has been working to keep it under control and this was my last chance before surgery. But I can't believe how fast it seems to have kicked in from the bleeding point of view. I haven't had a BM yet to see how much I have calmed down but its 9.30 am the next morning and I haven't had to have a toilet trip since the infusion, and I eat my dinner and everything yesterday as normal. I made it through a whole night sleep without having to get up at 4am. so Remicade so far I LOVE YOU :) :)
 
I had my 3rd infusion yesterday and the nurse who put the IV in me had trouble finding a good vein, but managed to only stick me once. Other than that, everything went well!
 
karj said:
my doctor told me yesterday that it seems to work different for everyone and it can be the 4th infusion before people really start to see the effects. the nurse also said this so don't despair yet :).

I am seeing an improvement straight away but that is because my problem was constant bleeding. nothing has been working to keep it under control and this was my last chance before surgery. But I can't believe how fast it seems to have kicked in from the bleeding point of view. I haven't had a BM yet to see how much I have calmed down but its 9.30 am the next morning and I haven't had to have a toilet trip since the infusion, and I eat my dinner and everything yesterday as normal. I made it through a whole night sleep without having to get up at 4am. so Remicade so far I LOVE YOU :) :)
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Heya Karj,
me tooooo!!!!
maybe we've got better stuff here in Eire. woohoo. i love remi too.

JU
 
Wow! Is there ever a lot of people on remi, and it appears that it really works! I fought my doctor for a year cuz I was terrified of remi.... I read to many bad things about it in these forums, but I gave in and had my first infusion yesterday. Had a mild Bach ache near bedtime, but other than that I feel no different. I was so scared of remi and now I kinda feel silly for over reacting. Just curious though, for those that have been on remi for a couple years, any hair loss? I would be.devestated if my long beautiful hair fell out. I'm happy for everyone feeling some relief with the use of remi, and for those
that aren't... Hang in there!

Diagnosed in 1990 at age.of 9
Tried everything, only prednisone worked over the years
Ditching the pred. And trying the.remi!
 
j.bug said:
I'm just in between infusions two and three...number three is next Friday. So far I haven't had any horrible negative side effects from the remi, but I haven't had as much progression as I had hoped for! Call me impatient, but its tough to wait for results. I've been in about a three yr flare. Two days ago I spent 12 hrs in the emergency room. They were going to admit me and put me on iv prednisone due to my inflammation levels. My original reason for going to the er was dehydration and pain. I have CD in my terminal illeum And esophagus. Its very painful when I eat or drink anything. Some days I'm lucky to get in 4-8 oz of boost plus nutrition shakes.
I've read that a lot of people on here have almost instant improvement with the drug, but not me! Lol! Its very frusterating, but when I come on here I'm able to laugh a little, smile a little, and hope just a little more! :)
I'm still looking for even one other person that suffers from crohns esophagitus, as I do, but that's starting to feel like a lost cause! My drs aren't sure what will be next for me. CD is so individualized to begin with, but having CD in my esophagus makes its that more difficult for the drs to tell me what expect next.
As I said, I do get frusterated, and my recent er trip did a little number on my spirits, but it is normal for it to take up to your third infusion to start to feel results, right...?!!
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Jen, I am between treatments 2 and 3 on Remi. My Crohn's is in my Ilium too mostly but that's not the problem now, it's been my butt, with pain and bleeding in the perianal area. Ouch. Yours sounds mamothly painful compared to mine. I like your attitude. I can tell you are a winner and I'm sure you wont let anything you down. Keep fighting and let the healing happen every day.
 
scaredypants said:
Wow! Is there ever a lot of people on remi, and it appears that it really works! I fought my doctor for a year cuz I was terrified of remi.... I read to many bad things about it in these forums, but I gave in and had my first infusion yesterday. Had a mild Bach ache near bedtime, but other than that I feel no different. I was so scared of remi and now I kinda feel silly for over reacting. Just curious though, for those that have been on remi for a couple years, any hair loss? I would be.devestated if my long beautiful hair fell out. I'm happy for everyone feeling some relief with the use of remi, and for those
that aren't... Hang in there!

Diagnosed in 1990 at age.of 9
Tried everything, only prednisone worked over the years
Ditching the pred. And trying the.remi!
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I have been worried about this too, but I think it might just get a bit thinner? I don't think peoples hair have fallen out but then again I could be wrong! hope not though:shifty:. And don't worry I was very scared about it, my doctor wanted to try me on it a few years back but then it was so new over here in Ireland, there was not a lot of info on it. so don't feel stupid we all on the same boat :ysmile:
 
Niklovely....as you can see, everyone handles foods differently, I eat a salad almost everyday, I buy the organic spring mix and add goat cheese and olives and tomatoes and it works for me, I have more trouble with raw fruit in abundance....and happy belated birthday, I hope it was a fun day for you.
 
AK47 said:
Hello everyone!

Ive been advised by my consultant that they are going to put me on infliximab as they have tried Imuran and 6mp which both have failed :( my body can't handle these two and i get side effects such as severe blood and diarrhea (which doesnt happen before taken these meds).

Currently on 40mg pred, which keeps things under control but everytime i go below 20mg i go get major flare ups. Been told that im now steroid 'dependant'..and keeping me at 30/40mg.

Been on ped for 4 months now..how long are people usually on pred for?

Kind of nervous going for infliximab as the GI keeps tell me that its usually the 'big bomb' and last resort.

Any advice/tips would be lovely! Thanks!
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Hey sorry to hear your now steroid dependant. Can I ask how quickly you tried coming off? I've tried coming off twice and both times ended up adrenal suppressant. I'm on azathioprine, infliximab and still on pred. Managed to get down to 3mg now but i've had to come down 1mg every 2 months. Sadly I have been on them for well over a year now and will still be on them for another 6 months. Its not ideal but now its down to 3mg the moon face has reduced!! I was really nervous about infliximab and it took about 3 infusions before I felt the benefits but it has really helped me. I've taken a skin reaction to it and ended up rather spotty but its a small price to pay to be able to feel better.
 
I guess I can join the club now? Met with my GI to arrange a treatment plan yesterday (was diagnosed about a week or so ago), and as the crohn's is fistulating, she wants me on Remicade to start with... So I am just waiting to get it all set up! (not sure how long this process takes before I actually literally start on the Remicade... but I guess I will find out!)
Currently on Prednisone (40mg, tapering down 5mg a week)... Just started on it today, and waiting to see what happens!
 
Hi thisisme, welcome to the club. Please don't forget to look into the Remistart program that will help pay for the infusions because they are very very expensive. I hope your doctor's office talked to you about this.
 
Hi! This is my first time here and i came because i feel like it's pretty important to continue to stay attached to a support group even IF you, yourself, are doing quite well. When i was first diagnosed w CD in 1998, i found an online UD/CD support group and reading those posts helped me a great deal... just knowing i was not the only one out there w this embarrassing disease. (Later i found that my father, who lived far away) also had IBD and he used to say i was the only one he could talk "poop" with! At any rate... i was living in Denver and the first GI dr started me out on Asacol (16 of those horse pills a day!) and it truely did nothing but give me a headache! Then i found another GI and he tried the prenisone, since i was in pretty bad shape by now) He also took me off the Asacol. i then weaned off of the Pred and my syptoms (pain and bleeding and D) recurred and i'd go back on Pred. Pred's an amazing drug but only for so long and then it bites you terribly!!! At any rate... then it was Imuran. That helped a good deal and kept me in remission for a little over a year. When that began to fail (cramping/D started up again) the Physician's Assistant told me i should be on Remicade! i'd heard of it and i was really happy to finally have it offered. i've now been on Reicade for about 11 years... so far so good! i'm anxious to go reading more on here from others on Remicade. My infusions run $ 5000.00 every 2 mths (about) and i have had the last 2 yrs patient portions go to collections because i didnt have the $1000.00 coinsurance to pay them! i've slowly paid one year off... now i'm getting the 2nd one pd and at the same time, paying on my current yr. Nice to be here again... Faith
 
RHOV said:
when are everyone else's next infusions?

so far the schedule is:
Nov 15: katiesue
Nov 20: kromom
Dec 1: RHOV
today:Feagain


it would be cool if some of us were getting our infusions at the same time

i actually DO get my infusion w a very nice new friend who also has CD. The first time we talked about CD/infusions/drs/meds... after that we didnt anymore! we're both in remission and life is good!
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I have my third infusion on the 25th Sept, then I think they are putting me on 8 weekly. Wow that means it will be nearly Christmas when I get my next one...it's starting to feel chilly here already.
I hope 8 weeks doesn't turn out to be too long, I have been feeling a bit tired again this week and its only been 3 1/2 weeks since my last one.
We will see I guess.
 
my next infusion is fri 28th.

any1 get flu symptoms with sore joints after their 1st infusion.
i feel like ive been hit by a bus

ju
 
Thanks for the welcome JudithC!
And thanks for the advise on Remicare. My doctor was hoping I would be approved under our government program, but it's looking now that this won't be likely. I have covereage (if they approve it) under my private insurance for up to 70%, but that still leaves quite a bit uncovered.
My coordinator mentioned the program through the drug company for financial assistance, so it sounds like we are going to try that route once the approval from my insurance company comes in... but apparently its only temporary coverage. I guess I will deal with that hurdle when it comes!
I keep reading about how expensive it is, I have to say --- That is causing me way more stress than everything else right now!
 
I entered remission the first time thanks to Remicade. I did first infusion, then 2 weeks, then 4 weeks, then 4 weeks, then 6 weeks, etc all the way to every 8 weeks consistently for a year. I stopped, it worked so well I thought I was done. No symptoms for so long.

Two years off medication, symptoms resurfaced, and now we begin again. I start remicade next week again, then another infusion in 2 weeks, etc

They offered me Humera that I could do at home, but I had such a good experience with a doctor in the past I opted to drive to my infusion doctor (seperate office from my GI).

Wishing everyone the best...I heard of Leukemia scares when using 6MP at the same time (this will be a first for me) even though it's rare it's still an afterthought in my head...oh boy.
 
I have my 3rd infusion the end of this month. No effect yet, at least I don't think so but I do hope it helps. It seems everyone is having great results. My fingers are crossed for good luck!
 
I had my first Remicade infusion on Friday.I haven't noticed anything out of it yet.What I do notice are all these side effects from prednisone.I hate it!Seems like I just blow up like a balloon while on it, and it's not helping with my inflamation as much.It hasn't got any worse, but not better either.
I was on Humira for 2 years before GI switched me to Remicade.Humira never worked for me.
I was very comfortable getting my first infusion.I had a huge comfy chair, a nice TV, and room service where I ordered Filigon mignon young! :D My hospital is nice.My husband was also comfortable and got to eat and drink all the coffee and cookies he could handle.lol
I'm very hopeful this remicade will work.And hopefully fast, so I can get off this prednisone.yuck.
Anyone know how long it can take to start working?The nurse told me ppl usually start feeling improvement after their 3rd injection.My next one is scheduled in 2 weeks.
:)
 
dixiedoll everyone is different. i saw improvement after 1 infusion and i know some never see any. unfortunately i caught a dose and had to postpone my 2nd infusion so keep well and warm. i too had no luck with pred but i did find once i went of it that it must of being keeping my uc at bay cuz my symptoms got worse again.
pred made me gain 10lbs too but now im of it its started to come of and my appetite is settling.
hopefully you get some relief soon.
ju
 
sickinlk said:
dixiedoll everyone is different. i saw improvement after 1 infusion and i know some never see any. unfortunately i caught a dose and had to postpone my 2nd infusion so keep well and warm. i too had no luck with pred but i did find once i went of it that it must of being keeping my uc at bay cuz my symptoms got worse again.
pred made me gain 10lbs too but now im of it its started to come of and my appetite is settling.
hopefully you get some relief soon.
ju
Click to expand...

Thank you for the support.
I woke up today feeling a little bit better, actually.It has to be the Remicade starting to kick in.I had my infusion on Friday, so today would be the 3rd day.Sound about right? I hope so.
I have a GI apt this week, so I'm hoping he will say I can start to wean OFF this prednisone.That would be good news, if it's possible.
 
Oh no, no infusion for me today , apparently I have a water infection :(

Worst thing is they have given me the antibiotics that I had a bad reaction to 4 years ago (what I now believe may have been my first flare).

I am not going to take them, waiting to talk to the IBD nurse about alternatives, if she ever rings back.
 
ah beachbum thats sucks. i know the feeling too. which dose ru on? i havent been able to get my 2nd loading dose yet due to frigin flank pain.
remicade really works for me so hope we both get well soon.

dixiedoll, feel well!

ju
 
Mama & Mac said:
Hello everyone, will be starting remicade again very soon,
Just had a resection july23/12 now I have a post surgery infection and am hooked up to a vac system, unable to start remicade until the wound is closed, hopping that will happen soon....anything I can do before starting that might help?
Click to expand...


I know this is a little late to post, but the night before I drink A LOT of water. I find it helps with the recovery. As well has a nive vein for an IV :) Ive been getting Remicade for 3yrs, so feel free to ask me any questions!!
 
hi thunderstruck,
good for you for going back to education. im thinking about studying general nursing next year and i was worried about being on remicade and/or having a stoma. have you had any problems?
also did you go ahead with infusions when you had a cold or was sick at all.

lol. you might be sorry you offered to answer questions.

thanks
ju
 
sickinlk said:
hi thunderstruck,
good for you for going back to education. im thinking about studying general nursing next year and i was worried about being on remicade and/or having a stoma. have you had any problems?
also did you go ahead with infusions when you had a cold or was sick at all.

lol. you might be sorry you offered to answer questions.

thanks
ju
Click to expand...

No Problem!! Remicade has saved me. As well as having an ileostomy. I am healthier with the combination. Labs are actually within normal limits, which is amazing considering I was on my death bed prior. Having an ostomy is great because I dont have to drop everything and go to the bathroom. Which comes in handy in the medical field(like surgery) The ONLY problem Ive had with Remi (knock on wood) is a reaction when they infused too quickly. I dont allow that nurse to treat me now :) I think of the disease as a gift. I know what its like to be in chronic pain, scared, alone, and frustrated. Therefore my patients recieve excellent care from me :) Good luck with your route of treatment! And if you want to pursue nursing....go for it!! You already have the patient side down!
 
nice 1 beach bum. Im still down with this cold(feels more like a sinus infection) but im going in on Friday anyway. ill let them decide.

thunderstruck you certainly are an advocate for remicade and ileostomy. Yeah i can see what you are saying about patients. sympathy goes a long way and if you've been there its much easier. i know ill make a good nurse. cant wait!

ju
 
I've had the same appointment for 3 years. Sunday morning @ 6am. Every 8 weeks. I am the only person in the room until 8ish. I get mine every 8 weeks.
 
#1gunnah said:
I've had the same appointment for 3 years. Sunday morning @ 6am. Every 8 weeks. I am the only person in the room until 8ish. I get mine every 8 weeks.
Click to expand...

lucky you. never heard of such things being done on a sunday.

i was sent home today. they saw blood in my urine again protein and my bloods showed an infection somewhere. i hope its just this sinusy cold ive got at the mo not a kidney infection. rescheduled for next fri.

ju
 
Hi everyone!
I must be one of the lucky ones.I have found relief after just one infusion!The GI doc said this is very promising news that Remicade will do a good job and be a good medicine for me.I hope so, because the Humira never did anything.I think the rem is slowly getting me out of this flare.My doc said I can start to wean off this pred, which is also good news.I am on 20 mg now. :)I went from going to the bathroom 12+ times a day to only once in the morning!Might have something to do with the pain pills on, but I doubt it, since I have been on them a while, and they have never constipated me.
Hope everyone has a good day.
xoxo
 
Just out of curiosity, and I'm sure this has been asked before, but how do you know you are in remission?

Somedays, I forget I was even sick. And then other days I have pain with gas and bowel movements. Or feel sick after eating something I shouldn't have.

What indicators help you determine remission?
 
Been on remicade for about a year now, but my GI just doubled the dosage because it wasn't working how they wanted to, also started taking 6mp, anyone have similar stories?
 
I had my 3rd dose of Remi on Friday and it does not seem to be doing anything for me yet. My Crohn's is flaring up in the perianal area rather than my intestine at this time. Remi has had excellent results (they say) in taking care of problems like mine, but so far, no change. They are talking about trying Humira instead.
 
Interesting Remi story. My GI increased my dose to 10mg/kg back in June. I had another infusion in August (8 weeks). Then I went to the Vandy IBD Clinic and they reduced the time to 6 weeks and added MTX. I went for my 6 week infusion last week and happened to read the bag. It said 5mg/kg!! I called the nurse in and asked why I was only getting half my dose. After some frantic chart-checking and calling my regular GI, they determined that the new orders from June didn't get updated in my chart, so I only got that dose in June. I got half the dose in August. And since the infusion had already started, they couldn't remix and start over, so I had to stay an extra 3 hours for another bag of 5mg/kg. I was at the hospital from 8am to 3pm. I can't believe they messed up my dose! From what I gather, it was my GI's office's mistake. My GI was in the hospital doing scopes that morning and stopped by to talk to me and said as much. At least it's fixed now. But I wonder if I'd have needed to add the MTX if I'd gotten the full dose in August.

Since adding the MTX, I'm down to 2-3 BMs a day, mostly formed. No pain, no nausea, nothing. Extreme fatigue, thanks to the MTX and a bit of brain fog (chemo brain). I had my first labs last week since starting the MTX and haven't heard anything, so I guess no news is good news.

I go back to Vandy in a few weeks and if I feel I'm in remission, she'll scope me to prove it. If I am, I get to stop the MTX and just continue the Remicade. If not, I will be switching from Remi to Tysabri.
 
Stephanie, I'm assuming that MTX is Methotrexate? And, what is tysabri, I haven't heard of that before. Is it new? Is it also an infusion? My remi is at 5mg and I was doing ok until recently, now starting with some minor pains/cramping again and I wondered if I should just ignore or call Dr. I suppose I can easily tolerate this, but is the change worth noting? changing meds?
 
Yes, mtx is methotrexate. I do 25mg injection once/week. Friday was my first infusion/injection in the same day and I was WIPED this weekend. Whew. I was exhausted to the point of tears. Tysabri is a newer infusion, but it's been around a couple years, I think. There's someone on here that's been on it a while-ManzyB, I think?

When are you getting the pain? If it's a week or two before your infusion is due, they can move it up. Mine didn't seem to be wearing off...it was just not changing anything at all, so they increased the dose. Not sure why they shortened the time. I guess because I'm already on the max dose. And it's obviously doing SOMEthing, because I was at 15-20 BMs/day before I started. I'm also on Lialda, VSL#3 and immodium.
 
Hi everyone - new to the forum, and its been great reading through everyones experiences.

I've been diagnosed this year with Crohns (TI) disease. My brother was diagnosed with ulcerative colitis about 10 years ago, and I kinda guessed I'd end up being stuck with some sort of IBD haha. Due to start Remicade on the 17th October...and pretty nervous. It has taken the doctors SO LONG to confirm crohns and get me onto medication, so this is the first treatment I've ever been given.

Any advice?

Hope you're all well x
 
chattertess said:
Hi everyone - new to the forum, and its been great reading through everyones experiences.

I've been diagnosed this year with Crohns (TI) disease. My brother was diagnosed with ulcerative colitis about 10 years ago, and I kinda guessed I'd end up being stuck with some sort of IBD haha. Due to start Remicade on the 17th October...and pretty nervous. It has taken the doctors SO LONG to confirm crohns and get me onto medication, so this is the first treatment I've ever been given.

Any advice?

Hope you're all well x
Click to expand...


chattertess,
hi and welcome,
you are being put on a very severe treatment for a newbie so im guessing your symptoms are really bad.
funny did they not even try steroids 1st.
im on remicade. had my 1st infusion last month if i could just get well enough to get my 2nd i'd be flying. its been the only drug that has worked for me.

ju
 
sickinlk said:
chattertess,
hi and welcome,
you are being put on a very severe treatment for a newbie so im guessing your symptoms are really bad.
funny did they not even try steroids 1st.
im on remicade. had my 1st infusion last month if i could just get well enough to get my 2nd i'd be flying. its been the only drug that has worked for me.

ju
Click to expand...

Hello :) thanks for the welcome.

I went on a one week dose of high steroids, but they did nothing at all. The consultant decided after that to go straight to Remicade. Well I certainly feel terrible on a daily basis - stomach cramps, toilet rushes, muscle/joint pain, exhaustion etc etc. I never know what level to class myself as. Just after my first colonoscopy, I was classed as mild, but ever since a couple of days later things have gotten worse and worse.

Hope you get your 2nd one soon and it goes well :)
 
Hello :)
My husband, age 30, was diagnosed with Crohn's Disease just over 3yrs ago, after a very bad flare up, ending him up in the hospital a few times. He got referred to a GI, and was put on many meds (prednisone a few times, purinethol, aziothiaprine, etc), and finally was approved for Remicade therapy. This Dec will mark 2 years of him being on Remicade. The improvement has been AMAZING. When he first got sick, he lost about 2yrs of work and his life as he was so sick. We own our own business so it has been VERY tough. Since he started Remicade therapy he has been doing amazingly, except for recently. The past 3 treatments (he goes every 6wks), he has been getting headaches after and is very tired (more than usual). Then last week he mentioned to me that the bottom of his right foot underneath the toes is numb, and he doesn't have any feeling. Last night he showed me his hands, which have lots of cuts, and the skin is peeling. Just scraping his hand on something @ work (he builds houses) will cause his skin to cut/peel off. This is all new. I'm just curious (and terribly worried!), have any of you on treatment had any of these side effects? As a Mom to three small children, I am very worried about him, and am not sure of what's going on. He has been extremely tired lately also.
Any help is greatly appreciated!
Thank you kindly :)
 
I wouldn't be able to offer any advice at this point, Momma2three, as I've not even started Remicade yet, but I hope you can get some help asap :)
 
off for take 2 on my infusion today ( turned away last time due to water infection) I think I can feel a cold coming on, but I don't want to mention it as they might say no again :/
 
I have developed peeling skin on my thumbs (random). I asked my dermatologist and she said it's eczematous skin (which I've never had in 32 years). I never thought it could be connected to any drugs. I just figured it was some random thing.
 
Beach bum said:
off for take 2 on my infusion today ( turned away last time due to water infection) I think I can feel a cold coming on, but I don't want to mention it as they might say no again :/
Click to expand...

did you get it beach bum
i was turned away today because i have thrush!!!!!!
still waiting on a 2nd infusion.
bad luck since 1st infusion, havent been healthy enough to get it so its been postponed 3 times.

grrrrrrrrrrr.
 
Momma2three said:
Hello :)
I am very worried about him, and am not sure of what's going on. He has been extremely tired lately also.
Any help is greatly appreciated!
Thank you kindly :)
Click to expand...
Hello momma2three,
Some of your husbands symptoms could be reaction to the Remicade.
He should be talking to his GI specialist about these events and the Remicade coordinator, the sooner the better.
I am so sorry to hear of his problems and hope they will soon be resolved.
Drug reactions usually go away when the causative drug is removed but sometimes it takes a while.
Hope he will feel better soon.
Hugs and best wishes
Trysha
 

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