Remicade Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Angie's Mom said:
Jut wondering if you have heard from your doctor at all? I had my 3rd infusion last Tuesday and by Friday my joints were so sore I was in tears. I can't bend my fingers or wrists and my shoulders, hips and ankles are hurting so bad I can't even pick up my daughter. I'm having a hard time getting up and down the stairs... It just goes on and on.

I spoke to my remicade nurse and she explained that a lot of people with bowel diseases also suffer from other inflamatory diseases... Like rheumatoid arthritis!!! She said that often remicade can exacerbate the symptoms. I have a call in to my doctor now, so I'm just waiting.

Anyone else with a similar issue?
Click to expand...

My appointment is 8/28 so I have not heard anything yet. Let me know what you hear.


Finally, I have heard back but it's just a bunch of numbers to me. Apparently, I have to go to a rheumatologist now. Also, found that I have a lot of cervical degeneration and a bulging disc at c6 and c7.

More appointments later this month.
 
Last edited:
Donk4263 said:
My appointment is 8/28 so I have not heard anything yet. Let me know what you hear.
Click to expand...

So I just spoke with my doctor. He said that as far as the joint pain, it is a known side effect of remicade. He told me that normally they just recommend taking Tylenol.
In my case, he said that the only thing we can do is wait it out until closer to the next infusion to see if the pain goes away.
If the pain is more localized (just one or two area's) he recommended hot and cold therapy, unfortunately I've got way to many achy joints... I'd me sitting under a cold pack all day!
Hope that helps. Let me know what happens at your appointment on the 28th.
 
I start remicade on Friday. My biggest concern is that I am allergic to all types of furry animals and the fact that this drug is made from mouse proteins makes me think I'm likely to react, not to mention my record with any drug hasn't been good. Is anyone else allergic to animals and taking remicade? The nurses and drs seem to just be waving off my concern, but seriously the only meat I can eat safely comes from animals of the feathers or scaled variety. Kind of nervous.
 
I start my first Remicade infusion tomorrow and I'm super excited. A friend of mine who takes Enbrel shared this prayer with me. I plan on speaking it over my body as we start the IV. "In the name of my savior, Jesus, I ask that this medicine enter my body as a Healing Elixir, going only where it is needed to provide healing and regeneration. I ask for protection from any and all side effects and risks associated with taking this medication, both now and in the future. I ask that it blesses me with healing, energy, and a perfectly balanced immune system . Amen"
 
Alberta_sweetie said:
I start remicade on Friday. My biggest concern is that I am allergic to all types of furry animals and the fact that this drug is made from mouse proteins makes me think I'm likely to react, not to mention my record with any drug hasn't been good. Is anyone else allergic to animals and taking remicade? The nurses and drs seem to just be waving off my concern, but seriously the only meat I can eat safely comes from animals of the feathers or scaled variety. Kind of nervous.
Click to expand...

Hi Alberta,

I am not allergic to animals but I hope some of these things I tell you ease your mind a bit.
With your first infusion, they will infuse the remicade very very slowly. This lessens the chance of reaction but if you do have a reaction they will likely give you some steroids or antihistamine along with the infusion.
This should stop any reaction.

If you do happen to react, they will give you one or the other at your following infusions and your second and third infusions go at a slower rate too. Depending on what happens, you and your GI can decide that if a small reaction is worth the benefits of remicade.

But you never know, it could be your miracle drug and it all goes perfectly for you! Please keep positive and thinking good thoughts. Keeping my fingers crossed and hoping your infusion goes well. :hug:
 
PhoenixBird said:
Thanks so much :) I suppose the tiredness after will be a bit like how I feel after my iron infusions too. I usually feel pretty exhausted and sleep for a day afterwards. I'm pretty scared for my first infusion, but I'm also hoping this will finally be the thing that works for me after years of failed drug attempts.
Click to expand...

I agree with Jordinary, I got very tired after the first 3-4 infusions and would sleep the rest of the afternoon. Now, its been over a year and I hardly ever get tired and the side effects have subsided slowly. I'm really thankful for Remicade.

Best of luck!
 
Angie's Mom said:
So I just spoke with my doctor. He said that as far as the joint pain, it is a known side effect of remicade. He told me that normally they just recommend taking Tylenol.
In my case, he said that the only thing we can do is wait it out until closer to the next infusion to see if the pain goes away.
If the pain is more localized (just one or two area's) he recommended hot and cold therapy, unfortunately I've got way to many achy joints... I'd me sitting under a cold pack all day!
Hope that helps. Let me know what happens at your appointment on the 28th.
Click to expand...

Thanks for the info...I'll let you know.
 
Has anyone suffered from itchy skin while on remicade? I've noticed since my last infusion that every time I shower the skin on my legs becomes so itchy it almost brings me to tears of frustration. There is no dryness or hives that I can see but it's driving me insane!! I've been applying an anti itch cream after toweling off and it seems to help a bit.
Anyone with a similar issue?
 
Angie's Mom said:
Has anyone suffered from itchy skin while on remicade? I've noticed since my last infusion that every time I shower the skin on my legs becomes so itchy it almost brings me to tears of frustration. There is no dryness or hives that I can see but it's driving me insane!! I've been applying an anti itch cream after toweling off and it seems to help a bit.
Anyone with a similar issue?
Click to expand...

Yes!! I have had this a few times in the last month! I wondered if it was from Remicade. The thing is I remember having this problem when I was much younger( 41 now, 21'ish then) It was much worse then and did have me in tears...this time around it is frustrating but not as intense as I remember. So if Remicade causing it now, what caused it then I wonder?

It is the top of my thighs where it happens.
 
JoFowler said:
Yes!! I have had this a few times in the last month! I wondered if it was from Remicade. The thing is I remember having this problem when I was much younger( 41 now, 21'ish then) It was much worse then and did have me in tears...this time around it is frustrating but not as intense as I remember. So if Remicade causing it now, what caused it then I wonder?

It is the top of my thighs where it happens.
Click to expand...

The top of my thighs is where I get it too! So I did a little bit of research and discovered that because of our suppressed immune systems, we can get skin sensitivities to certain products that never gave us sues before.
I have a scoping scheduled for next week, I'll mention it to my doctor than.

Thanks for the response!
 
My first remicade infusion yesterday went really well. I prayed the prayer, envisioned the fistula closing and enjoyed the smooth jazz on the radio. Then last night I had a great dream - i was kissing a cute guy with sunglasses. So I'd say the remicade is working!
 
Jordinary said:
Alberta_sweetie, how did your infusion go?
Hoping that there was no reaction!!! xx
Click to expand...

It went ok. I ended up sleeping for a couple hours after, which is the longest consecutive sleep I've had in ages and then insomnia for 3 days after. I had pretty sensitive skin before, but now it seems ridiculous. I seem to get rashes from everything I touch now. I'm not feeling any better yet but it was only the first infusion. I go again next week.
 
Have a 17 year old with ulcertive colitis and a genetic handicap of partial trisomy 16. doctor just told us we need to treat her more aggressively which is remicade .i am so scared of side effects...it is hard with Jessie she has a high pain threshold because of her trisomy 16,the dr tells me she should be in pain and she isn't....so how do I know if she has side effects of this medication
 
Hi, It's a hard place to be in. I hated the idea of Remicade , and still do. But after my son had his first infusion at 12 (he just turned 13), he came in the kitchen a few days later and saw me crying .. again. He said Dont cry momma, I feel better than I have in a long time. I feel like a new man.

So , at least for me, even though I keep researching and cant wait til the day he's off of it.... I have to learn to let go a little and just be happy and find a little peace in the world of difference it's made for him for now.

Prayers to you and your family.
 
Hi Jessie's mom,
I will keep you and your daughter in my prayers. Keep asking your doctor questions, but if other things have not been successful and they're recommending Remicade, realize that over 1.6 million people have been treated with Remicade over 15 years. I got that off the Remi-start brochure here. I began my infusions last week, next one is this Thursday. As you can read in my posts above, I have come to feel that Remicade is actually saving my life and preventing further problems. I keep up a good diet, sleep, exercise as tolerated, but it wasn't enough so I'm grateful this medication is available. :hug:
 
I came very close to dying from the complications of Crohn's. After trying every pill the docs have in their arsenal, they either didn't work or put me back in the hospital. As a last resort I started Remicade in 2004. So far, I've not had any side effects or problems with it. It has provided remission for me and I feel great. I hope you all have the same results as I have had. remission!
 
Thanks for the replies Jessie goes for her tb test tomorrow ,then after it is read I guess we will be making her appt to receive the first treatment:(
 
Best of luck to you and Jessie. I sure hope she obtains the same level of relief from the complications of Crohns that I am. Remicade has been a Godsend.
 
Does anyone ever grow immune to remicade, like to the point where it no longer works? I've heard that our bodies can eventually build up antibodies to the drug and it no longer does what it's supposed to.
 
Jessie's mom,
Look for allergic reactions. hives , swelling ect. I just picked up on this club. I usually am on another Crohns board. Healingwell.com Some people do get Benidril just before the infusion. the schedule i started with was 4 weeks,4 weeks , 8 weeks, I did that for awhile. I noticed that it was starting wearing off about the sixth week, the 7th was rough and then Ii would get another infusion. I had the interval shortened to 7 weeks and then later to 6 weeks.

Now the side effects I experienced, Felt great the first 6 to 8 months. Then I Started to get the memory fog. It got pretty bad and I stopped the infusions at 13 months. I still experience the memory problems, but it is not a total loss. I did the neuro thing, what a waste of time. Doc told me that once I stop Remicade you can't go back for fear of antibodies.

But I have to say it was great while it lasted.
 
PhoenixBird said:
I have my first remicade infusion tomorrow morning. I'm freaking out. I'm absolutely terrified. My GI wants to give me a steroid as a pre-med which I have had a major reaction to before. He seems to think it won't be a problem but I'm still scared.

What can I expect during/after the first infusion? Is it true that I won't experience a reaction if I'm going to get one until the second or third infusion?
Click to expand...

If you have a fear of needles, it may be a little upsetting for you. Try to stay calm until the catheter is in, then relax for the next couple hours. You may want to take a book or a game with you. The infusion itself isn't any big deal and you won't even notice it. I've been on Remicade for 9 years. It has worked so well, I can't imagine what my life would be like without it. I wish you the best of luck.
 
QuestionEverthing said:
Jessie's mom,
Look for allergic reactions. hives , swelling ect. I just picked up on this club. I usually am on another Crohns board. Healingwell.com Some people do get Benidril just before the infusion. the schedule i started with was 4 weeks,4 weeks , 8 weeks, I did that for awhile. I noticed that it was starting wearing off about the sixth week, the 7th was rough and then Ii would get another infusion. I had the interval shortened to 7 weeks and then later to 6 weeks.

Now the side effects I experienced, Felt great the first 6 to 8 months. Then I Started to get the memory fog. It got pretty bad and I stopped the infusions at 13 months. I still experience the memory problems, but it is not a total loss. I did the neuro thing, what a waste of time. Doc told me that once I stop Remicade you can't go back for fear of antibodies.

But I have to say it was great while it lasted.
Click to expand...

I am so scared of the side effects because my daughter does not relay pain to us because of her handicap...so if her throat hurts or her joints we will not know
 
Just sharing my experience. Had my first Remicade treatment today. Very straightforward for me. They started the drip, took vitals, and began the infusion at the 30 level, again taking vitals right after the infusion started.

Continued to take vitals every thirty minutes.

After The first hour they increased the rate to 60. After another hour they ran it up to 120 I think.

Total infusion time was 2 1/2 hours. No side effects so far, but the Nurse partitioner told me they rarely see any side effects during the first infusion. He said if there is a negative reaction, they usually see it during the second treatment, which for me will be in two weeks. So, I'll post again then.

Oh, and the good news is I'm now tapering Pred. Finally! I hope desperately I can get off the Pred as the side effects are depressing.
 
spinnychick said:
Does anyone ever grow immune to remicade, like to the point where it no longer works? I've heard that our bodies can eventually build up antibodies to the drug and it no longer does what it's supposed to.
Click to expand...

Yes you can develop antibodies. If you are still on MTX that may help not to develop them. After over 10 years of Remicade I am being tested for the antibodies. I hope I can stay on the Remicade, it at least works for my arthritis. :)
 
I have infliximab today. I'm a bit nervous.

Last time I had a "possible reaction" a couple of hours after the infusion. I have to wait to see what happens this time as to whether we need to change how it is administered to me, like put it through slower or with a dose of steroids.

I'm also nervous because I have to go on my own because my mum is away for a couple of days and my dad and sister are at work. I have to get two buses there and back. This is infusion number 5 for me.

I'm going to take my ipod to listen to music and a new magazine to hopefully help me relax a bit!
 
Hi all, I'm sort of stuck here... I received my 3rd dose of remicade on August 5th. Shortly after (aprox 2 days after) I started experiencing agonizing joint pain in my knuckles, wrists, shoulders, spine, knees, ankles and toes. I also at the same time seem to have stopped producing body oils which has lead to painfully itchy scaly skin all over my body including my face and scalp.

Some background, I always had some joint pain while taking prednisone... But nothing like this. I've also never had issues like this with my skin.

I contacted my GI doc who in regards to the dry skin said that perhaps my house is too dry. I have 2 humidifiers running at all times these days and my poor husband says he feels like he's living in a rain cloud because everything seems so damp.
As for the joint pain, the response I got was.... Hmmmm, have you tried taking Tylenol every 4 hours? Yes, yes I have and it doesn't help.

To make matters worse, I've been living on the toilet for the last few weeks again!!!
I'm at the end of my rope and in tears here, I don't know what to do!!! Any suggestions would be greatly appreciated. Thanks
 
Poor you, sounds like you're going through a really tough time. My thoughts and prayers are with you to find something that works as it sounds remicade isn't.
 
Angie's Mom, joint pain is a rare side effect of Remicade and there are members that have had to discontinue it's use after the joint pain started. You may want to bring this up again with your GI and possibly get a referral to a Rheumatologist, a Rhuemy can determine if this is from remicade, or an EIM of your CD, or if you are dealing with something else. Since, it is sometimes hard to come back to the biologic meds once you stop them I would look into all of these angles to make sure every thing is checked.

My son had joint pain with his CD but it seemed worse when he started Remicade, we had to add MTX to get his CD under control completely and his joint pain subsided after sometime with the added MTX.

I hope you find some answers soon!

Link to joint pain and remicade:
http://ibdcrohns.about.com/cs/prescriptiondrugs/p/medremicade.htm

http://www.medicalnewstoday.com/articles/248273.php

And here is a thread on the forum about Remicade and joint pain:
http://www.crohnsforum.com/showthread.php?t=7683
 
I am counting the days til my Remi on Tuesday. I have been dealing with fatigue and reflux for a couple of weeks. Reflux is gone, but fatigue is just awful! At least I can sleep lots this weekend~ Zzzzzzzzzzzzzzzzzzzzzzzzzz
 
I have my next one on Sept 9th, then an appt to get my left hip checked on the 10th...hip has been bothering me more and more lately - if I am on my feet all day it can really hurt.....I can't rotate my hip as much as the right one either.....ugh.....
 
There are two very different risks with remicade no longer being effective:
1) You can develop an allergy - this is hives, fever, difficulty breathing, etc. This generally occurs during the infusion but it doesn't have to.
2) You can develop a resistance to it - This is where your body basically figures out a way to neutralize the remicade. This is where the remicade just stops working. This is most common.

Both of these can be prevented by keeping your intervals no more than 10 weeks. 8 weeks is the recommended maximum interval. Source: my doctor who helped pioneer using biologics for treatment of crohn's.
 
Two other pieces of data he shared with me:
1) 30-50% (depending on the study) of people on long term Remicade have gotten to a point where they cannot find any inflamed tissue in colonoscopies (I am in that group). That is a big deal.

2) It is going to take another 5-10 years of data collection, but initial data points towards Remicade actually reducing your chance for cancer. It is their belief that the reduction in inflammation reduces your chance for colon cancer. Colon cancer is much more common than lymphoma to begin with so this has a more dominant effect. It is his belief that in 5-10 years we'll be able to scientifically prove that Remicade reduces the chances of getting cancer.
 
Hi. On Remi for a little over a year now. Did increase to 800mg, but then reduced to 600 because of small reaction. I do this every 5 weeks. Does anyone have a 'port' strictly for their remi infusions? My veins are bad and I can only use one arm due to breast cancer. It's getting a little tricky and painful. The good side is (please please) I think I might be in a remission....I have no pain and no D, feel normal for the first time in ages.
 
Hi all, I have been on Remicade since Jan 2009. It healed my fistula and made me more healthy than I have been in decades. I still get tired afterwards, light headed and "loopy". For me a lost week-end every 8 weeks is worth the health benefits. However, I have a new side effect. Does anyone else have stomach bloating after the infusion? This has happened the past 3-4 infusions. Also, my hands were a bit swollen this am and I could not get my wedding band on, my infusion was yesterday. To all who are concerned about taking Remicade-when you are at the point that your doc is recommending Remicade you have been through a lot and this may be the answer. If you have too many problems there are other approved biologics that can be tried. BUT all biologics are serious medications, stay informed, keep good communication with your doc.
 
Hi All .. new here so if i post wrong my apologies ia ..

my hubby was diagnosed with Crohn's in '92 (early 20's) had a resection in '99 .. he was on Pentasa but has taken no meds these last few years

his crohns has gotten so much worse, its heart breaking to see him in such distress and pain :voodoo: ... his new doctor has decided to put him on remicade .. i have been reading up on the drug (good and bad) and have found all the info here very very helpful .. it has really helped to lower my stress level a little thanx!

he has his first infusion on Sept 7th and we are both excited and worried all at the same time .. fingers crossed remicade will help him !!

thanx for reading
 
Summerstorm,
Sending prayers for easy and successful infusion for your hubby Sept. 7. My third infusion will be Sept. 27. So far it has been amazing, crohn's under control, fistula healing and psoriasis leaving. I'm taking B12 and Coq10 and all the other stuff (probiotics, fish oil, multi, no sugar, SCD diet and I'm really hopeful I'll be able to go back to work in Dec. I am so grateful that Remicade has been safely used without side effects by so many. We have to keep our eyes open for reactions and be smart about hand washing and avoiding people w infections, but I'm praying for a much healthier, more functional life overall. I'm glad your husband and you are in this together. Love is healing too. <3:kiss:
 
summerstorm, best of luck to your husband. My husband says our life is so different(better) since Remicade. Prior to Remi he never knew if we were going to have a good week-end because I might be weak or nauseous, just crash from working, but now every week-end except the infusion week-end I feel good. Also, I feel healthy during the week and did not have to have surgery for the fistula. it changed my life. The Remi side effects have been worth it for me.
 
Hope it all goes well for you, Joshuaaa and gets you to remission quickly!! Sending hugs, prayers and support your way
 
infusion went well :D I feel pretty good, guess it's stil early days coz im pred n shiz and doing pretty well atm, slight headache n fatigue but I think my body is loving it. Praying it gets me into histological remission. Hope everyone else is doing good. xoxo
 
Hello fellow Remicade takers....I am 5.5 years into taking it now. My life has gone from the absolute pits to being basically a normal life, via this wonderful drug. I am so appreciative.
 
Jessie starts her first treatment on tues I am so scared.and now she starting to flare bad,she hasn't flared in 5 years,and today is bad I am guessing it is because her mp6 med was stopped so we can start her on remicade.hoping it doesn't get worse before Tuesday, it is so hard for us with this because she never complains guess part of her disability ,she just shuts down when she flares any suggestions of what to do ,or info to tell me how to know if she is flarng
 
my appetite just disappears and i dont want to eat...when flaring. I wonder how many other 'cronies' disappear into themselves when they flare? i know I do. Good luck Jessie's mum.
 
Jessie's mom said:
Jessie starts her first treatment on tues I am so scared.and now she starting to flare bad,she hasn't flared in 5 years,and today is bad I am guessing it is because her mp6 med was stopped so we can start her on remicade.hoping it doesn't get worse before Tuesday, it is so hard for us with this because she never complains guess part of her disability ,she just shuts down when she flares any suggestions of what to do ,or info to tell me how to know if she is flarng
Click to expand...

6MP and remicade aren't mutually exclusive, is there a reason you stopped the 6MP? Has it stopped working?

Both of these drugs take a ramp up to begin having an effect. The 6MP I think is three months, remicade three infusions (or maybe more?) before improvements should be expected. I would definitely ask the GI why they stopped one before the other was ramped up.

What makes you think Jessie is flaring, anything specific? If she's suffering increased inflammation, a short course of prednisone - as much as I hate it - might be in order until the remicade takes hold. Just a thought, mind you. Steroids can help head off a flare.

Not much help, I guess, just really letting you know we're all here supporting you. Good luck with Jessie's remicade treatments.
 
I don't really even understand "flaring". I was diagnosed a year and a half ago and am on remicade now for 8 months or so but still have very loose bowel movements 4 - 5 times a day. No blood, no pain. What constitutes a flare?
 
spinnychic, this is what the forum wiki entry for flare states:

The periods of Active Disease are often called Disease "Flares" or "Flare-Ups". During Crohn's Flares patients are highly Symptomatic. The Frequency, Duration, Type of Symptoms and Severity of Crohn's Flares varies between patients.
Click to expand...

source

I think the definition of what constitutes a flare can vary from person to person. One might feel since they aren't having pain they aren't "flaring" even though they are experiencing excessive D while another would say they are "flaring".

Here is a thread on the forum where it has been discussed:
http://www.crohnsforum.com/showthread.php?t=19720
 
She has had about 12 loose stools since yesterday, just sent a culture out. They stopped the mp6 drug because they said she couldn't take it with the remicade.she is still on her asacol
 
Jessie's mom said:
She has had about 12 loose stools since yesterday, just sent a culture out. They stopped the mp6 drug because they said she couldn't take it with the remicade.she is still on her asacol
Click to expand...

Interesting, my GI specifically told me that when using a combination of the 6MP and Remicade together, he sees about an 80% success rate in kicking CD into remission. He specifically wanted to start them both at the same time so they would reach their ramp-up at about the same time.

I wonder why the two different approaches?

Best of luck to Jessie on the Remicade treatments, I go for my second infusion on Monday and then again two more weeks later for the third. I'm sorry to hear she's flaring - was it better when she was on the 6MP?
 
They told me remicad and mercaptopurine together was not a good mix,but her being off of it is what landed her in hospital.c diff test came back negative,still haven't seen gi dr yet,I really hate hospitals on weekends
 
hi everyone .. well my hubby had his first Remicade infusion this past Saturday .. we were pretty nervous but it went just fine .. he says that he is feeling better today !!!! its hard to say if it is all in his mind or if it actually works that fast .. either way i'm ecstatic for him and us .. :dance:

he was tired after his injection .. (didn't stop him from making me take him to "5 GUYS" to eat though) lmao... we didn't do much for the rest of Saturday but Sunday he seemed to have more energy :kiss:

next infusion is in 2 weeks from this past Sat ... :)

just thinking ... he wasn't as bloated this morning as he went off to work so maybe just maybe it does work this fast .. !!!

thanx for all your support!!
 
Sending support to Jessie's mom and Jessie. Praying that c. Diff stays negative and the best GI doc is on call for you. Seeing her down to two formed bowel movements/day, eating healthy food and absorbing the calories and nutrition. Visualizing total and complete remission and freedom from all of this pain. Fly through the flagyl and come out safely. Are they giving her flora star? I would ask for it from the hospital dr or GI dr. Helps seed the good bacteria. It is a beneficial yeast called saccorhomyces boulardi and can prevent c. Diff. Take it a couple hours away from flagyl. Ask dr. God bless.
 
Thank you for the advice I will ask when I see her gi in the morning this is the 4th night here in the hospital,her heart rate is down a bit and fever is down a bit.she hasn't eating since Thursday afternoon and drinks hardly nothing they still have her on Iv,they did cat scan last night because of fever and vomiting but no obstructions thank god..she was awake and spoke a bit more today ,weekends in hospital are hard trying to get people I think they staff lighter and put all new drs on.her gi is back on tomorrow so we will hopefully have more answers,she had about 20 watery stools today she isn't even feeling them at this point ,I am thankful for washer and dryer on hospital floor..they will not start remicade till vomiting and fever are gone
 
Day 5 in hospital fever finally down she is a bit better,they started steroids tonite to hopefully control loose stools..if all goes well and no fever they will be starting remicade tomorrow or Thursday,wish us luck.
 
Well, had my second remicade infusion yesterday. Last night and today I felt beat, very tired out. Didn't happen after the first one, do wondering if this is kind of normal?

On another fun note, it took nine attempts to get a line in. Nine! The office Nurses at my GI are awfully nice, but nine sticks to land an IV. I was like a science experiment.
 
It does wipe some people out, my son is tired for about an hour afterward but I think it is due to the benedryl they give through the IV before the infusion.
 
Ribo said:
Well, had my second remicade infusion yesterday. Last night and today I felt beat, very tired out. Didn't happen after the first one, do wondering if this is kind of normal?

On another fun note, it took nine attempts to get a line in. Nine! The office Nurses at my GI are awfully nice, but nine sticks to land an IV. I was like a science experiment.
Click to expand...

Hi Ribo .. my hubby was tired after his first infusion .. he had it last Sat morning and he napped on the way home .. its hard to say, he may just have been in a self induced coma after the 5 GUYS burger he inhaled!!:eek2: lol

(it takes us approx 55 min to get to our Rem clinic) .. by Sun he seemed to have more energy (more energy than is usual for him on a normal day before Remicade) ..

when he came home from work Monday and Tuesday evening he said he was tired and seemed to be more tired than usual (he says he hasn't been sleeping well) .. so i'm having a hard time figuring out if its the Remicade making him tired or "other everyday things" ..
(for us) it does seem to be that time of year when its getting darker earlier and cooler out and you do less in the evenings ...

his next infusion is in 10 days .. i can honestly say that he seems to over all be feeling better .. less bloating, his eyes seem clearer, more appetite ..... AND less bathroom time!, and GOOD bathroom time! if you know what i mean :) ..

we were told that some people feel tired after their infusions on some occasions but not necessarily all and that as time goes on it improves .. hopefully that is what is going on with you and you will feel better and better as time goes on!


when you mentioned about the 9 sticks to get your IV in, it kinda hit home here too as it took the nurse 5 to get his in .. in defense of our really nice nurse his vein sure wasn't cooperating by making itself known, but i felt bad for him anyway .. not a pleasant experience :(
 
I am always tired after infusion, and go home and go to bed for a few hours. I get up around 8pm, have supper and go back to bed at my regular 10pm time. This last one, I had bad joint pain when I got up at 8, but it was gone in the morning.
 
It's frustrating with the multiple needle sticks. I was in for bloodwork yesterday to check my potassium again and it took 4 tries. I especially hate when they prick it in and then miss the vein, so they dig the needle around in your arm to try to hit the vein lol.
 
Ok, i spoke too soon about the bathroom time .. has anyone else noticed an increased amount of bathroom time when first starting Remicade?? or maybe after their infusion?? ..
 
I just wanted to share our experience because when my sons GI wanted him on remicade before he left the hospital during a 4 day stay... we were scared to death and felt like it was the end of the world.Now, I will say that I still get anxious and don't like having to do them.. but after we started them my son saw me crying in the kitchen and said don't cry momma, I feel better than I have in a long time... I feel like a new man(he was 12). Now he's 13 , has gained 17 pounds and gained over 2" in height. I hope this helps anyone new to making the choice.
 
summerstorm said:
Ok, i spoke too soon about the bathroom time .. has anyone else noticed an increased amount of bathroom time when first starting Remicade?? or maybe after their infusion?? ..
Click to expand...

I've had some increased bathroom trips lately, but I suspect it's because I'm weaning my prednisone way down. I'm down from 60mg per day to 30 mg per day. Nothing crazy like I used to have, but definitely more as I've been tapering lower and lower.

Remicade is supposed to take 6 weeks to normalize and start to take effect, so I think it may be optimistic to expect much after the first dosage, at least as I understand it. Similarly, you can't discount any benefit until it has time to build up in his system.

I know it's hard to be patient, but that seems to be necessary with this treatment.
 
I am on my 6th remicade
I have increase of "D" after the remicade --I got home tuesday and had a couple and also yesterday. also seeing more blood. Not sure why-- going to ask GI next time I was diagnosed in January with crohns and ultra colitis and gastoritist. I still have multiple "d" every day nothing solid but better than where I started from so I guess it is what it is. Now it seems I have other host of problems! I just want to live a normal life--whatever that is!! and be able to eat without wondering if it is going to affect me now or in a couple hours!

I am off prediisone!! Yea
I take:
lasix
folic acid
allign
asacol
nexium
mercaptopurine
 
Jessie's mom said:
They told me remicad and mercaptopurine together was not a good mix,but her being off of it is what landed her in hospital.c diff test came back negative,still haven't seen gi dr yet,I really hate hospitals on weekends
Click to expand...

I take mercaptopurin while during remicade. Have not seen where you should not
 
shawnagio said:
Jessie's mom said:
They told me remicad and mercaptopurine together was not a good mix,but her being off of it is what landed her in hospital.c diff test came back negative,still haven't seen gi dr yet,I really hate hospitals on weekends
Click to expand...

I was on 6-MP for a couple of years along with remicade.....was told that was preferred.....
 
After this week in the hospital with her and only seeing her gi dr 2 times in a week,they keep sending residents in that have no clue,one actually told me she has Crohn's not colitis which in fact was not true..well anyway I am thinking it is time to look for new dr
 
More than likely, Jessie's Mom GI is concerned with an elevated risk when using immunosuppressants and biologics together for HSTCL. Some GIs avoid the combo, others allow for the combo for a short time then drop one of the meds and still others feel that the benefit of the combo out weighs the risk of developing HSTCL.

Here is one of the earlier quotes from a study and why they added the black box warning labels:

"Although most reported cases of HSTCL occurred in patients treated with a combination of medicines known to suppress the immune system, including the TNF blockers, azathioprine, and/or mercaptopurine, there have been cases reported in patients receiving azathioprine or mercaptopurine alone," the FDA notes.
Click to expand...

source

They have since published studies that have shown that the risk is elevated for young males but has happened in women and elderly. Also, although the risk was initially when using 6MP or Imuran together with a biologic they have since seen it with biologic alone, 6MP/Imuran alone and with MTX and biologic.

I believe also there was a study that showed that although the risk first seemed to be with a combo it is now considered even if you have discontinued one of the meds(biologic or immunosuppressant before starting the other.

Here are some links to the studies:

http://www.ncbi.nlm.nih.gov/pubmed/21941193

http://www.nature.com/ajg/journal/v108/n1/full/ajg2012334a.html

So the risk is there but small. My son is on both Remicade and was on methotrexate so he is at increased risk. We thought the benefit was worth the risk for QOL. Hugs and support to all, these are hard decisions and they are made in hopes of staving off an insidious disease.
 
Last edited:
Jessie is finally home from the hospital, only 2 bathroom trips she is doing ok appetite slowly coming back not sure if steroids are doing that she has 2 more days of them.her 2nd remicade is scheduled for sept 26.if she tolerated it well last night will this mean the 2 infusion will be tolerated as well
 
To be honest, it is probably the steroids that are having the most immediate effect.

Regarding a reaction, my GI told me they watch the second infusion more carefully than the first, that if there is going to be a reaction it is usually during the second treatment. If you tolerate the second one well, they seem to be pretty confident that you will tolerate it well.

So from what I've read and been told, the second one is key.
 
Hoooray for infusion day tomorrow. Not that I really like going there, it's boring, but I usually feel sooo much better after the infustion, it's like I'm re-energized.
 
I have been on Remicade for five and a half years....when i started taking it i was under 50kg and taking 40mg of cortisone every day and had been for a few years.

Today I am 65kg and i feel basically as normal as I could hope to feel.

I am due the infusion this week, but I think it is time to get off the mouse protein!

Has anyone got off Remicade and is still well? i guess if they have they are not on a forum about crohns?

My diet and lifestyle are 100% different to how it was 5 years ago....i feel it has all aided in my healing, not just the remicade.
 
Today Jessie seems a bit out of it complained to was hard to swallow her chic nuggets at lunch wondering if her throat hurts.i read this is a side effect am I right??? She seemed so much better over the weekend then she does now,she had the first remicade last Thursday would side effects show up this far after...hoping it is she is just wiped from being in hospital last week from bad flare
 
Diet Is really so individual but what I find works really well for me is cooked salmon, and SCD's chicken carrot soup, my throat was a lil tickly after first infusion I think, just keep an eye on it, and temperature and what not, hope your little angel feels 100% as soon as possible xo
 
And male sure she is drinking plenty of water, coming off the prednisone and starting the remicade. Liver and kidneys like a good flush :)
 
Best thing to do is buy a 1.5 litre bottle, try get thru 1 and a half a day, it's easier to track than glasses or cups. She should be going to wee heaps which can be annoying but the kidneys will appreciate the help
 
Joshuaaa said:
Best thing to do is buy a 1.5 litre bottle, try get thru 1 and a half a day, it's easier to track than glasses or cups. She should be going to wee heaps which can be annoying but the kidneys will appreciate the help
Click to expand...

I have been giving her water bottles get about 2-3 in her,with her handicap she can get very stubborn..just to do a colonoscopy she needs to be admitted the night before and have a nose tube for prep,she refuses to drink it
 
Joshuaaa, what is this chicken carrot soup? Is it breaking vicious cycle book? I need to make some new soups, and Jessie's mom, that's a good way to sneak more fluid in :)
 
Hi All,
Are you supposed to know if Remicade works after two loading doses? I, like Jessie, have been dealing with a bad flare. I was in the hospital from 8/30-9/06. I was pumped with steroids, on IV fluids, tons of blood tests, stool tests, had upper and lower endoscopy. I hate having to be on the steroids and worry so much when will I know if Remicade is working? This has been so tough on my family and me. I just pray, pray, pray for remission for everyone. I see my GI on 9/23 and my next Remi infusion is 10/07. I'm scared to taper the steroids but hate the side effects. I wish I knew how to tell if the Remicade is doing anything? Does it take some people more than 2-3 doses to know if Remicade works? HUGS fellow IBDers
 
I heard it can take up to 6 weeks so hang in there, there's still hope, in the mean time try have anti-inflamitory foods, vitamin therapy, anything that can work alongside it, I understand the urge to get off pred, nasty stuff, hope things sort themselves out and you get into remission ASAP xoxo
 
Hi Iriechic,
I'm sorry to hear you were hospitalized. I know prednisone is unpleasant, I have needed it a few times. Try (if possible:) to be grateful for it and know that it is temporary and you need it to 'stay in the game'. I say that with an open heart full of empathy and prayers that you can get off it soon, but that little mind switch helped me when the worry/anxiety about the drugs were adding to the IBD symptoms.
Are you stable with your bowel movements or are they still frequent and/or bloody?
I just wonder when I pray for you what exactly you want to see - or what are the symptoms not responding to remicade?
And I agree w Joshuaaa, nutrition can be key, especially if you are gluten sensitive. Lots of soups and cooked vegetables and meat got me through that time after the hospital and weaning off prednisone.
I pray your mind, at least, can have peace as you move through these next months. I know there is a lot as a mother and wife you can't do right now, but please give yourself a break and ask for help and try to stay in gratitude as you ask questions, find the best drs, and pray for full remission. I'm sending you big hugs and full recovery. Take good care,bk
 
Ok so I think Jessie is flaring again 5 very bad loose stools from 3-9:30 pm tonite!!!really can a flare start up that quick again
 
Jessie's mom, she probably is still in a flare, although these meds can work quickly to bring down inflammation and lessen symptoms from inflammation it can take some time to get complete healing so she may experience periods of activity but they should become less frequent as she achieves mucosal healing of the bowel.

I would just make sure that you update the GI with any change in symptoms or severity so they can be on top of any adjustments or testing that needs to be carried out.
 
She was doing better only like two to three a day, then tues didn't seem herself and now today,she isn't even making it to the bathroom
 
Could it be not enough prednisone to control it fully she only had 5 day treatment 4 days in hospital by Iv and one by mouth at home,she has never flared since diagnoised in 2006 her major issues is the ulcer that keep growing
 

Similar threads

B
My healing story: towards full recovery from UC
Replies
2
Views
2K
kisseefitzrandolph
K
awoenker12
Starting Remicade
Replies
10
Views
3K
Jelly loves Peanut butter
J
M
SIBO & Infection Experience (Crohn-like symptoms)
Replies
1
Views
13K
chrohnotrigger
C
T
Remicade/Inflectra issue
Replies
1
Views
3K
Scipio
Scipio
awoenker12
Don't know what to do
Replies
43
Views
5K
NuttyGuts
NuttyGuts

Latest posts

Back
Top