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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Problems since infusion of Remicade on Friday


10-29-2012, 08:22 PM   #1
crohnette
 
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Problems since infusion of Remicade on Friday

Hi all, I appreciate any help you can give me as I am new to this site. I have had Crohn's for 9 years. I am currently on a treatment of Pentasa, Imuran and Remicade for 1 year now. This is the first time I have ever been on Remicade and Imuran. I had my last infusion on Friday the 26th. I have been flaring ever since, getting worse by the day. Is this normal? A lot of stomach cramping, diarrhea. I have had where the last week or two before infusion I flare slightly but not like this. My stomach hasn't hurt like this for almost a year. Help, what should I do? Has anyone experienced this?

Thanks for the help!
10-29-2012, 11:22 PM   #2
tots
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Call your GI in the morning- maybe your dose is not high enough.

Lauren
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Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
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10-30-2012, 04:47 AM   #3
sickinlk
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could be a reaction to the remicade esp if its just since you started it. def call your doc. dont ignore any new symptoms once you are on remicade.

from what ive read they wont take you of it, they'll probably blame something else.
ju
11-02-2012, 09:32 AM   #4
crohnette
 
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I called my GI and they are doing some tests and said that should not be happening especially since I just had my 8th infusion a week ago. So now it is the waiting game until someone tells me what I should do next. I have been having a ton of stomach cramping the last two days and joint pain is coming back with what seems to be a vengeance. Thanks for the support.
11-23-2012, 02:22 AM   #5
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I called my GI and they are doing some tests and said that should not be happening especially since I just had my 8th infusion a week ago. So now it is the waiting game until someone tells me what I should do next. I have been having a ton of stomach cramping the last two days and joint pain is coming back with what seems to be a vengeance. Thanks for the support.
hey crohnette. whatever happened when you talked again with your GI? Have you yet? I see that you are from st cloud. I am from grand rapids. where do you doctor? i see the gi team at the university.
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DX CD Terminal Ileum May 2012
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*Pentasa *Hyoscyomine *Protonix *Gabapentin *Xanax *Wellbutrin *Ultram *Flexeril
*Vitamin D3 *B-12 injections *Iron *Remicade
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Today I will fight again!!! I will not let this disease own me, or define me!!!!


11-27-2012, 09:21 PM   #6
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Hey there.

I also experienced excruciating immense pain that I hadn't had for at least 1 and a half years after beginning my infliximab infusions (about 4 days after I started). It was an awful time and I was starting to loose hope but, after about 2 weeks maybe, it died down and never returned again. So maybe thats just what you're going through and it'll pass eventually.

Sending positive thoughts your way
11-27-2012, 09:36 PM   #7
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Hi there!
I had infliximab infusions about a year after my diagnosis in 2002. Each time I had an infusion, I would get flu-like symptoms which included extreme fatigue, full body aches, headaches, stomach cramping, etc. for weeks afterwards. It was thought that I simply could not tolerate that medication and it was discontinued. Maybe you're the same? I hope this helps a little. I also hope this note finds you feeling better than you did the last time you posted.
Love.
11-28-2012, 09:40 AM   #8
crohnette
 
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hey crohnette. whatever happened when you talked again with your GI? Have you yet? I see that you are from st cloud. I am from grand rapids. where do you doctor? i see the gi team at the university.
SMILE, AND HUGZ!
I go down to Plymouth at MNGI. I had some pretty terrible experiences with the GI group in St. Cloud. Awesome to see someone from the area on here! I did talk to my doc they ran a gamut of tests and aren't finding anything, they want me to have another colonoscopy(UGH!) but I asked if any of my current meds could be the problem or if maybe I have grown an immunity to the remicade. I notice on this site that some people were having similar issues after being on it for a year or year in a half.

I really hate taking so many meds. I am so afraid of what they are doing to the rest of my body. My pain has also been on the rise but my GI always pushes that off like nothing. It drives me crazy.

Thanks again,
Katie
11-28-2012, 09:47 AM   #9
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How long have you been on the Pentasa?
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11-28-2012, 10:01 AM   #10
crohnette
 
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How long have you been on the Pentasa?
Since July 2011.
11-28-2012, 10:02 AM   #11
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Hmm. I only ask because bleeding, inflammation, and diarrhea are sometimes side effects of Pentasa, but if you've been on it that long it's not very likely. It's possible you're immune to the Remicade already, or maybe you have an infection going. Definitely need to see the doc.
11-28-2012, 10:34 AM   #12
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I go down to Plymouth at MNGI. I had some pretty terrible experiences with the GI group in St. Cloud. Awesome to see someone from the area on here! I did talk to my doc they ran a gamut of tests and aren't finding anything, they want me to have another colonoscopy(UGH!) but I asked if any of my current meds could be the problem or if maybe I have grown an immunity to the remicade. I notice on this site that some people were having similar issues after being on it for a year or year in a half.

I really hate taking so many meds. I am so afraid of what they are doing to the rest of my body. My pain has also been on the rise but my GI always pushes that off like nothing. It drives me crazy.

Thanks again,
Katie
I have heard that your body can build up an immunity. Have they ever done a Remicade Trough Level on you? I know that my GIs have never even suggested it, and it helps determine a lot. The trough level is taken near the end of your 8 weeks, and it shows how much Remi is left in your system. Sometimes people burn through it quicker, and they need to up the dose, or put your infusions closer together.

Have they found anything out yet?? How do you like your drs? The team at the U is great, but they see so many patients. I never talk to my dr. I talk to my RN over the phone when needed...but sometimes it takes days for them to get ahold of me! It kinna blows. And its such a far drive. St Cloud is closer, and more familiar. Not to mention you have a Crafts Direct store the size of a Walmart!!!!

I really hope that you are feeling better, and that if you haven't heard anything yet, you will very soon! Sending good vibes!!

SMILE AND HUGS!!!
11-28-2012, 10:36 AM   #13
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Oh wait, you go to Plymouth...that would be even farther for me. I have been thinking about switching to the Mayo though.
11-28-2012, 11:01 AM   #14
crohnette
 
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I have heard that your body can build up an immunity. Have they ever done a Remicade Trough Level on you? I know that my GIs have never even suggested it, and it helps determine a lot. The trough level is taken near the end of your 8 weeks, and it shows how much Remi is left in your system. Sometimes people burn through it quicker, and they need to up the dose, or put your infusions closer together.

Have they found anything out yet?? How do you like your drs? The team at the U is great, but they see so many patients. I never talk to my dr. I talk to my RN over the phone when needed...but sometimes it takes days for them to get ahold of me! It kinna blows. And its such a far drive. St Cloud is closer, and more familiar. Not to mention you have a Crafts Direct store the size of a Walmart!!!!

I really hope that you are feeling better, and that if you haven't heard anything yet, you will very soon! Sending good vibes!!

SMILE AND HUGS!!!
Thanks, yeah even St. Cloud is a long way for you to drive! I have a great aunt up in your neck of the woods! I actually just got off of the phone with my patient coordinator, a colonoscopy is scheduled for the fifth. GROSS! I have a really hard time drinking all of that crap and after my last one a little over a year ago, I had a really hard time getting all of the air out of my system and had terrible cramps for three days after! Horrid!

Thanks!
11-28-2012, 11:14 AM   #15
j.bug
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Thanks, yeah even St. Cloud is a long way for you to drive! I have a great aunt up in your neck of the woods! I actually just got off of the phone with my patient coordinator, a colonoscopy is scheduled for the fifth. GROSS! I have a really hard time drinking all of that crap and after my last one a little over a year ago, I had a really hard time getting all of the air out of my system and had terrible cramps for three days after! Horrid!

Thanks!
Well, hopefully they will figure out whats going on!!! It's no fun at all when you feel this way. I have been these last couple weeks because I had to delay my Remi due to an emergengy surgery! I get it at 12:30 today, and I couldn't be happier! It was a relief when my surgeon cleared me, because all of my syptoms have been worsening daily!

St Cloud doesn't seem like a long drive. We go to Fargo all the time, and my hubby grew up in Wadena, super short from there. And we are in Wadena like once a week. I do love youor shopping in St Cloud though! If you have ever been up this way, you can imagine why!

Oh I do hope they find out whats going on...are you still feeling so miserable? Has it gotten worse or better at all??
11-28-2012, 11:27 AM   #16
crohnette
 
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Well, hopefully they will figure out whats going on!!! It's no fun at all when you feel this way. I have been these last couple weeks because I had to delay my Remi due to an emergengy surgery! I get it at 12:30 today, and I couldn't be happier! It was a relief when my surgeon cleared me, because all of my syptoms have been worsening daily!

St Cloud doesn't seem like a long drive. We go to Fargo all the time, and my hubby grew up in Wadena, super short from there. And we are in Wadena like once a week. I do love youor shopping in St Cloud though! If you have ever been up this way, you can imagine why!

Oh I do hope they find out whats going on...are you still feeling so miserable? Has it gotten worse or better at all??
It has stayed pretty much the same. Could be worse but I definitely don't want to go back to where I was a year and a half ago. Good luck today hope it helps you feel better right away! I just wish the pain all over would go away. I would handle the rest just fine I think but the pain is a little more every day. All the testing is coming back good though that's why he want the scope. I don't think they know what to do.
11-28-2012, 11:42 AM   #17
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It has stayed pretty much the same. Could be worse but I definitely don't want to go back to where I was a year and a half ago. Good luck today hope it helps you feel better right away! I just wish the pain all over would go away. I would handle the rest just fine I think but the pain is a little more every day. All the testing is coming back good though that's why he want the scope. I don't think they know what to do.
A lot of the time, they don't know what to do...around here anyway. That really sucks!

Have you tried heating pads for the pain and cramping. I never bealieved that that would help at all, but it does. And if you get one big enough, it will propbably help with your pain all over. A friend of mine, from here on the forum, told me last night that an electic blanket works great too.

Just a thought. I wish I could help you feel better!!
11-28-2012, 12:06 PM   #18
crohnette
 
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A lot of the time, they don't know what to do...around here anyway. That really sucks!

Have you tried heating pads for the pain and cramping. I never bealieved that that would help at all, but it does. And if you get one big enough, it will propbably help with your pain all over. A friend of mine, from here on the forum, told me last night that an electic blanket works great too.

Just a thought. I wish I could help you feel better!!
Thanks I may have to try that. I have heard medicinal marijuana helps too, but since it isn't legal here yet I will have to try the heat. Does your pain and such worsen with the weather? My GP thinks I have fibromyalgia too? I don't know what to believe. The heating pad thing will be hard for me though because I get super hot really easy, like hot flashes but I am not old enough for those yet....medication related I think.

Thanks for all of your support. It is so nice to have someone who truly understands the ups and downs of this dumb disease. It is hard to get people to understand all that goes along with CD. And I have such a hard time with the GI's because I have yet to find one with decent bedside manner. Sucks, they just tell you what and how to do it and don't really get that it effects the whole persons body and mind. Blech I feel like such a "Debbie downer"!
11-28-2012, 12:39 PM   #19
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Thanks I may have to try that. I have heard medicinal marijuana helps too, but since it isn't legal here yet I will have to try the heat. Does your pain and such worsen with the weather? My GP thinks I have fibromyalgia too? I don't know what to believe. The heating pad thing will be hard for me though because I get super hot really easy, like hot flashes but I am not old enough for those yet....medication related I think.

Thanks for all of your support. It is so nice to have someone who truly understands the ups and downs of this dumb disease. It is hard to get people to understand all that goes along with CD. And I have such a hard time with the GI's because I have yet to find one with decent bedside manner. Sucks, they just tell you what and how to do it and don't really get that it effects the whole persons body and mind. Blech I feel like such a "Debbie downer"!
MM is something that I have looked into a lot. And BLAST...not legal here!!! It shows soooo many benefits. But I guess we have to wait, move, or find a dealer!!!

I agree 100% on your meds causing hot flashes. The other thing is that PAIN, can cause hot flashes. And being you're in so much pain, and discomfort, it could be that too.

You are not a Debbie Downer AT ALL!! This disease sucks! If you can't complain on a Crohns Forum, than where in the heck can you!! You really dont have to thank me at all. When I first came on this site, I was looking for people that understood what I am going through. So many people think that all that comes with CD is the big D! You can only talk about it with your friends and family so much. But on this forum, you can complain all dang day! And you will find support.

I have met some amazing people in this little community, and made some great friends. I cannot even begin to tell you the support that they have offered. I just want to pay it forward!

HUGS AND SMILE!!!!
11-28-2012, 12:52 PM   #20
crohnette
 
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MM is something that I have looked into a lot. And BLAST...not legal here!!! It shows soooo many benefits. But I guess we have to wait, move, or find a dealer!!!

I agree 100% on your meds causing hot flashes. The other thing is that PAIN, can cause hot flashes. And being you're in so much pain, and discomfort, it could be that too.

You are not a Debbie Downer AT ALL!! This disease sucks! If you can't complain on a Crohns Forum, than where in the heck can you!! You really dont have to thank me at all. When I first came on this site, I was looking for people that understood what I am going through. So many people think that all that comes with CD is the big D! You can only talk about it with your friends and family so much. But on this forum, you can complain all dang day! And you will find support.

I have met some amazing people in this little community, and made some great friends. I cannot even begin to tell you the support that they have offered. I just want to pay it forward!

HUGS AND SMILE!!!!
It is awesome to have someone completely get it! I have a great support system in my world but none of them get it. They try but just can't.

This disease isn't something I would wish on my worst enemy. I am really pretty strong all of the time, I am never completely honest except on sites like this because I always feel like people think, oh boy, here she goes again.

Also, lately, I feel like everything I have dreamed for my life is held back because of CD. I know it doesn't have to define me but you are really limited because of all of the what if's. sucks.

11-28-2012, 12:59 PM   #21
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It is awesome to have someone completely get it! I have a great support system in my world but none of them get it. They try but just can't.

This disease isn't something I would wish on my worst enemy. I am really pretty strong all of the time, I am never completely honest except on sites like this because I always feel like people think, oh boy, here she goes again.

Also, lately, I feel like everything I have dreamed for my life is held back because of CD. I know it doesn't have to define me but you are really limited because of all of the what if's. sucks.

So, if you have seen my signature, I have a quote on it. It says, 'Today I will fight again, this disease will not own me, or define me.'

I have NO DOUBT that you are strong. You just have to keep fighting. I have felt exactly what you are saying. Infact, I was just about to enroll in school to become a lab tech...now some days I can barely make it out of bed. I think a lot if it is in our heads though. Especially about people not wanting to listen and support us. Your support system CARES for you. They want the best for you. Dont feel like you can't talk to them. I did that for a long time. This forum helps though. You can come on here and vent away. It is one place where we all can be 100% honest. And speaking of honesty, the 'what ifs' and the 'what nexts' scare the outta me!!!!

All we can do is fight. And educate ourselves. I am big on learning EVERYTHING that I can about this disease, and the different treatments. I don't want to go into anything blind. So I read and read and read!!!

Stay Strong!!! You can handle this!

~Bug
11-28-2012, 01:00 PM   #22
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I am off to an infusion now! But I can pretty much guarantee that when the iv is in, and the treatment started, I will be back! lol! (hospital has GREAT wifi!!!)
01-05-2014, 12:38 AM   #23
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Our son built up an immunity to Remicade. They couldn't find any trace of it in his system after testing him about 4 weeks after his last dose. He also managed to get a C-diff infection and the Mirsa virus. He had to go on enteral nutrition for 6 weeks and is now on Humira. It seems to be working somewhat, but he has grown several inches and lost 10 pounds in the last 6 months, and still has some lower abdominal pain on the right. Poor kid - has to go in for his 7th colonoscopy since being diagnosed with Crohn's.
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