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Remicade Club Support Group

CrohnsMomFreakinOut

CrohnsMomFreakinOut

Hey Tess-I pulled up the information on Enteral Nutrition-I can see how taht would make it much easier on the lower intestines & I will definatly keep it in mind.
We go to the Doc Fri & he is suppose to meet with the remicade nurse for labs on Monday-
He has National Honor Society Awards Tuesday-that he really wants to go to & of course he takes the big walk (graduation) on Thursday-Got a full ride acedemic scholorship!!
I used to e-mail all of his teachers at the begining of each semester to explain his condition-Sadly few of them ever read it..They never even tried to understand.
Poor kid busted his buns for years to go to college-Now he is right there-can almost taste it and has the mother of all flairs :(
 
CrohnsMomFreakinOut

CrohnsMomFreakinOut

empressreggie said:
The fatalities from Remicade were due to bacterial infections in elderly patients. Dr's require a TB test first as that was an early issue with using the drug. From the studies I've read and the information that's available on line, Remicade, like all the biologic drugs have associated risks but if you look at the numbers they're not common. Some people do have allergic reactions to Remi, they give Benedryl to avert some and titrate the med slowly. I was also scared at first reading the potential side effects of Remi (and frankly all biologics) but in balance especially if the disease is progressing and surgery will be required if it's not checked, the potential good outweighed the potential bad for me. I was in danger of a blockage due to severe inflammation that was in my transverse colon and the Asacol did nothing and I wouldn't go on prednisone given my past experience with it.

Let us know how it works out.
Click to expand...
Thank you so much Empress :)
I have been doing the research but some of the studies are hard to read & even harder to understand.-I am literate-have a masters degree but when it comes to reading medical studies my eyes cross and my mind turns into a fruit salade lol
The study i found stated that the fatal hepatosplenic T-cell Lymphomas were found in young adult male patients-
He is in an intense flair-Doc couldnt even get the scope in to see the ilium so I am sure this has to be done
 
sfmreb2

sfmreb2

ellewoods said:
Hi, all-

I had my first infusion this morning, and I'm feeling okay, if a little rundown. I was able to get it in my student health center, which was really convenient and I had a private, quiet room. The whole process took about 3 1/2 hours total, and I believe I received 400 mg. My GI didn't want me to take prednisone or benadryl prior.

Fingers crossed I start to experience relief soon and don't experience any side effects!
Click to expand...

My nurse says that drs that do not order benadryl have a god complex. :yfaint:
 
E

ellewoods

Hi, all-

I'm desperately in need of some guidance/insight on an Remicade insurance issue. I have a GI provider at a major hospital, but my primary care provider agreed to write my Remicade orders so I could get my infusions at my much closer university health center. I've had two infusions so far; both went off without a hitch.

I just spoke with my GI about an unrelated issue, and he raised the possibility of my insurance not paying for a Remicade order not written by a GI or Rheumatologist. Has anyone been denied because of what type of doctor wrote the order? I'm freaking out about possibly having to pay for both infusions out of pocket. I have a PPO, so did not need pre-approval for the infusions. Any guidance would be greatly appreciated!
 
SarahAnne

SarahAnne

ellewoods ~ I'm not really sure, I think it would depend on which insurance carrier you had. If the insurance does deny the claim is there any chance your GI would step in and write a letter to the insurance company stating the medical necessity of the drug? Even if he didn't write the initial order, it might suffice.

If it was me, I wouldn't contact the insurance company just yet. They are notoriously terrible about not wanting to cover things we need for various reasons. If it slips by and they cover it, great! If not, get your GI involved and fight it.

Good luck!
 
S

Shai_93

hey all. so i have started on the Remicade, my second infusion is next tuesday. i dud like to know the side affects of this drug?

-still so new at this -.-
 
Clash

Clash

Hi Shai_93 and welcome! My son just recently started his remicade treatments too. He has been really day after the infusion, it usually lasts that day but he bounces back the next day. He has complained with lower back pain after each infusion but that is a published side effect of Remicade, it seems to only last a day or two and is remedied with 2 tylenol. Oh and he has had some hot flashes but the GI seems to think those are due to the prednisone we are tapering not the remicade. It really has worked well for him too, I mean he could tell a difference before the second infusion! Good luck to you!!
 
System-X

System-X

Location
Seattle,
No real side effects here - been taking 900 mg of Remicade every 6 weeks for awhile now. My Sed Rate (ESR) is still 22 (normal is 0-15). I find that I feel better and can now go on longer walks. A dramatic improvement from where I was coming from...
 
tots

tots

Location
Austin, Texas
Got my insurance approval today for my Remicade!

So I thought I was doing ok with the whole Remicade
program. Now I am not so sure- pretty much having an
anxiety attack. I mean why not? Its only 12;43 at night.

Am I doing the right thing?

Lauren
 
Jessi

Jessi

Moderator
Remicade is an absolute Godsend for me. But I totally understand the anxiety involved. I swallow a xanax right before each infusion. ;)
 
C

Cathie

I got my first remicade infusion a week ago. i was very worried and freaked out before and during it. But, i am feeling better already and i am actually looking forward to my next appt. next week.
i know i just started it, but i think it will be a really good thing for me. And, i have been on prednisone for 6 months and i will do just about anything to get off of them for good!
 
Jessi

Jessi

Moderator
Hi Cathie and welcome!

I'm so glad you're feeling it work already. It's so amazing how we can all function again.

And, yes, getting rid of the evil prednisone is golden! :hug:
 
T

Trip

I just had one of my personal favourites yesterday, a colonoscopy :lol2: . The results were great with no signs of Crohn's whatsoever and the fistulas have disappeared too. The Remi is definitely working for me.
 
chrisnsteph1022

chrisnsteph1022

I think the Remi may not be the fix I was hoping for. After 4 infusions, I'm still having problems. Not as bad as before Remi, but still shitty (lol). I'm going back to my GI today for a follow-up. I'm curious to see what he'll do. I can't take pred and I've tried entocort (does nothing), Imuran (does nothing) in conjunction with the Remi. I'm afraid my GI is going to give up on me.
 
Jessi

Jessi

Moderator
Just don't give up on yourself, Stephanie. There are still options, hun. :hug: Keep us posted on how your appointment goes today.
 
E

empressreggie

Hi there, wondering if any of you have had some of the problems I'm now having with Remicade. I've been on it for 8 months or so and had been on a combo on 6MP and Remi, then stopped 6MP bc my body wasn't tolerating it. For the past several months I've had all kinds of side effects, chronic fatigue, joint pains and strange nerve pain in my neck/jaw and weight gain. 10 lbs in 8 weeks, which is a lot for me as I'm petite and have NEVER weighed this much, exercise daily despite exhaustion and eat very little max 1200 calories a day. I didn't experience any of this initially on Remi, but i was also on 6MP and my docs said that might have helped. I tested positive ANA but negative for Lupus specific tests. One of my dr's wants me to stay on Remi, maybe increase the dose, and go to a rheumy possibly bc I have developed another auto immune disease like fibromyalgia. My GI and I believe this is all due to the Remi, I didn't have a positive ANA prior and this is a known effect of Remi in some patients as is chronic fatigue joint pain and weight gain (one study confirms this). I don't want to continue Remi and live with these side effects...it's worse than Crohn's alone...Anyone have any advice? I am seeing rheumy and not getting my next infusion until we get to the bottom of this.
 
chrisnsteph1022

chrisnsteph1022

Well, he pretty much gave up on me. First, he said he wants me back on the Imuran (I stopped because I ran out-he said it was just for the beginning, since I was already on it, and I would come off. He wrote me a 3mo rx and I finished it all. Apparently, I was supposed to call for a refill.). And he said I could either go on the IBD Clinic at Vandy, or we could try doubling the Remi to 10mg/kg. I opted for the latter. I also mentioned a tiny cough I've had for 5-6 weeks and he ordered a chest X-ray. I had that done this morning, along with all my quarterly lab work, as well as a Remicade antibody test (I had to request this). I don't know when I'll get the results, since he's on vacation all week.

He doesn't prescribe methotrexate, which is about the only thing left that's already FDA approved. Other than that, it's clinical trials. It's really not THAT bad, so I'm thinking if the 10mg/kg doesn't help, I'll just learn to live with it. My typical day is 5-8 bathroom trips (watery, usually), and mild, mild pain. Nothing I can't live with.
 
T

Trip

I started on 5mg. but it wasn't quite right and by the seventh week I was getting symptoms. My G.I. changed it to 10mg/kg every six weeks and it has been good ever since.
 
Sandy A

Sandy A

I started Remicade recently, had my 3 loading doses, feeling pretty good, even the arthritis feels better. Before beginning, called my insurance co to make sure it was covered (BCBS), they said it was covered 100 percent. After my 3 infusions, I get my first note from my insurance company telling me what my part of the payment will be, 700 plus dollars...what???? Called them and they basically said, oh well, it is coded like a chemo drug, so sorry someone told you wrong!!!! what????? So that means I now have this one and 2 others that will have that large co payment due!!! That is just not fair!!!! Anyone have any ideas?????
 
Clash

Clash

Sandy A look up remistart online they help with your co pay, I dont know the details but it may be a good starting place.
 
C

ChrisL

Remistart

EGADS - that scares me as I have not gotten my EOB yet from BCBS for my first infusion. I did apply for the Remistart Patient Rebate program and they sent me a debit card. From what I have been told by my rheumatologist's office I need to bring in my EOB when I get it and they will then apply whatever balance I owe to the debit card for it to be deducted. So far I have only paid my $45 co-pay for my first 2 infusions.

The phone number for the Remistart Patient Rebate Program is 888-222-3771or go to www.RemiStart.com
 
Last edited:
Clash

Clash

Also I have bcbs and they originally said it was to be paid through our prescription side which is Caremark and would've been way more than through the ins. Plan. So they do make mistakes, Maybe go higher up the chain to ensure it is being paid correctly. Ours worked out that we pay 1300.00 dollars out of pocket each year the rest is covered.
 
tots

tots

Location
Austin, Texas
I have United Health Care. I just saw my EOB. I am at 100%
coverage right now. There were two things on my bill listed
as medical supplies. I have to call on the one. It totaled $100
The total for my infusion was just under 6200. Not to bad I
guess after hearing about some bills
 
D

deuce8

Location
East Coast
I suppose I should pick up my badge as a veteran of the club.

Went on Remicade for the first time in 2001 for only three infusions to help heal up a fistula. Things progressed nicely and I saw about 7 years of remission afterward on just a maintenance 5-ASA and 6-MP. I was only 16 at the time of the medication, so I think they were pleased with my improvement and felt it did its job and there was more risk in staying on it then taking me off.

In 2008 I had a four-month flare confined to my colon and switched the 5-ASA while upping the 6-MP and that did the trick. Two years of remission after that.

Then in 2010 I developed a fistula in the same location as the 2000/01 fistula and dealt with a surgery, 13 months on Humira, and finally went back on Remicade this March.

Had my first infusion back on Remicade in early April, had my second in mid-April, and when we saw the effects wearing off too early, we raised it to 10 mg/kg for the third infusion in mid-May.

Now after 3+ weeks (was supposed to wait the full 8), my docs have scheduled me for another 10 mg/kg infusion for tomorrow, and yet another seton placement for Wednesday.

I know how great this medication can be from the previous 7 year remission, so I'm hopeful that the 10 mg/kg every 4 weeks will finally get the meds to kick in as long as I need them to. We're planning to give it until at least September before considering a possible switch to Cimzia.

I'm one of the folks that actually enjoys the infusions. Great nurses where I go, and it gets me away from the office for the day. Plus, I'll get to watch both Euro 2012 matches while I'm there tomorrow - nice bonus.
 
cecilialynn

cecilialynn

Hello , i will be in your club soon enough. I am just waiting on the TB test and chest xray. Im on Imuran right now and will be heading out to get my bloodwork done today. I am still waiting on when my 1st infusion will be. Kinda nervous about it ,but have much support . I also have a uncle whos been on it who highly recommends it. So we shall see. Good luck to all of you.
 
D

Derek Ireland

Hi Guys

Not sure if any of ye can help, Im living in Ireland but moving to Toronto for a year travelling, I've been on Remicade for the past five years and i need to know how much it will cost per infusion and where the best place to get a doctor and the infusion done, i will have medical insurance going over but will only cover so much.
 
amyh

amyh

My GI doc gave me an option of Remicade or Humira... We are checking on which one the insurance pays more for.... I already have a stricture, (I'm 33) but if I eat right, I don't flare up and feel fine. If I can control my Crohn's without drugs, should I even be on the drugs?
 
L

Leelee

Hi everyone,

I'm not on Remicade but I just wanted to know if you have tried any of the natural remedies first? Turmeric, garlic, ginger, cilantro, parsley, vit A, B complex, C, D, E, potassium, magnesium, iodine, selenium, cesium, copper, omega 3s, flax, colloidal silver, probiotics, alkaline diet, apple cider vinegar, juice fasting, DMSO, melatonin, pig duodenum, pancreatic enzymes? These are all used to treat other inflammatory diseases and prevent cancer, heart and high blood pressure problems and clean the liver in the long run. Have any of you got a chiropracter/homeopath/naturopath/traditional chinese dr to help you with your nutritional program? Are you avoiding dangerous foods with aspartame, MSG, GMO, food coloring, preservatives, etc?

I'm scared for you when looking at the long list of deadly side effects of remicade: cancer? liver problems? death?
 
giftedbyadoption

giftedbyadoption

I dont think this is the place to come on here and put things like cancer scares about remicade to patients who have been on it and HAVE no other choices but to be on it for many years :(
My dr gave me the DVD to watch I know VERY WELL my risk and I hate them I ended up with blood on my brain and no spinal fluid for 4 months due to remicade and had to go off of it for a year. BUT during that year the RA ate my joints and spine in my back away and now I have to start epidural injections in my spine to be able to stand with out pain. I am back on remicade.... RA patients need these immune suppressants to stop the immune system from eating away at our joints and organs.
NO natural or vitiams or way of eating can help that process, so this is very disturbing and I am saddened you would place this kind of comment on the board knowing someone NEW who just came on here asking for support and saying he was scared and just going to start out.
THINK before you post stuff and read up on WHY some patients have to take it and WHAT reasons they have to and cant do your so called natural treatments that do not cure everything or everyone please...
Do you even have a disease that requires these types of meds? What gives you the right to think this is ok to scare people like this?
Leelee said:
Hi everyone,

I'm not on Remicade but I just wanted to know if you have tried any of the natural remedies first? Turmeric, garlic, ginger, cilantro, parsley, vit A, B complex, C, D, E, potassium, magnesium, iodine, selenium, cesium, copper, omega 3s, flax, colloidal silver, probiotics, alkaline diet, apple cider vinegar, juice fasting, DMSO, melatonin, pig duodenum, pancreatic enzymes? These are all used to treat other inflammatory diseases and prevent cancer, heart and high blood pressure problems and clean the liver in the long run. Have any of you got a chiropracter/homeopath/naturopath/traditional chinese dr to help you with your nutritional program? Are you avoiding dangerous foods with aspartame, MSG, GMO, food coloring, preservatives, etc?

I'm scared for you when looking at the long list of deadly side effects of remicade: cancer? liver problems? death?

http://www.ancient-minerals.com/magnesium-deficiency/
http://simplehealthsolutions.info/a-to-z/dmso-for-crohns-disease/
Click to expand...
 
Clash

Clash

I was going to report it because it disturbed me too, only because there are so many new members that end up on this thread looking for advice, experience, etc. after being prescribed Remi. I just wasn't sure if it was something I could report or not. I was worried I would be bothering the moderators for something that wasn't an infraction of the rules. I looked at the rules page but didn't see anything that exactly fit the situation. I remember the initial fear of C being prescribed Remi and thought it was so inconsiderate that she would post in that way. I don't have anything against alternative treatments, and enjoy reading about when something works but thought the tone and place was inappropriate.
 
J

JudithC

I agree Clash, and thought I would just let the Moderators review to determine if this is appropriate or not. It truly sounded like an 'AD' to me, especially with the links, which is not allowed. I am presently being treated for both cancer and crohn's, non-related, and would not want anyone scared off treatment. This is something that must be given full and sincere discussion and consideration with family and medical team.
 
Clash

Clash

JudithC said:
I agree Clash, and thought I would just let the Moderators review to determine if this is appropriate or not. It truly sounded like an 'AD' to me, especially with the links, which is not allowed. I am presently being treated for both cancer and crohn's, non-related, and would not want anyone scared off treatment. This is something that must be given full and sincere discussion and consideration with family and medical team.
Click to expand...
How many Remicade treatments have you had so far? My son just finished his loading doses and we saw awesome improvement right away! But now we are doing the first 8 week stint til the next dose and I find myself worrying alot about will it continue to work as well(worry...is what I excel at! LOL). I have fingers, toes and what not crossed that he sails through to the next treatment.
I will keep you in my thoughts and prayers for healing! I hope the Remicade is helping and continues to work for you!
 
giftedbyadoption

giftedbyadoption

I didnt think to report it :) its sad people are this ignorant when people are needing treatment for what ever reason.
Much love to you all <3

Clash said:
How many Remicade treatments have you had so far? My son just finished his loading doses and we saw awesome improvement right away! But now we are doing the first 8 week stint til the next dose and I find myself worrying alot about will it continue to work as well(worry...is what I excel at! LOL). I have fingers, toes and what not crossed that he sails through to the next treatment.
I will keep you in my thoughts and prayers for healing! I hope the Remicade is helping and continues to work for you!
Click to expand...
 
J

JudithC

Hi Clash: I started Remicade in January of this year, and almost immediately felt a positive difference and it has kept up so far. Although serious stress has caused D to come back off and on, there is no pain and minimum cramping and the D does not last more than a day or two if I'm careful with my diet.
 
L

Leelee

JudithC said:
LeeLee's post should be reported. It could be just an ad. I will do so.
Click to expand...
Hi all,
I am new and I am here for a friend, not as a patient. I feel badly about my tone on this thread. I am sorry for posting something that was out of line. I am really scared about everything I read here. I may even ask the moderator to take me off because I thought I could learn something but my friend is already in remission and I only use alternative therapy. I don't sell anything and I thought this forum was for discussing all options. The links I put were for magnesium signs of deficiency and the other was an article written by a doctor who understands what causes crohn's and what to do about it without drugs: dmso for anemia, melatonin for soothing free radical damage, pig duodenum for lacking enzymes and a special diet while you heal up. That's it.

I have been researching cancer for the last month and found the last webpage through that line of inquiry. I wanted to have a discussion about safe alternatives because I care about you. If you google the things I am looking at you will see why I wanted to talk about them here. Magnesium is not patented so is really cheap, same with melatonin, iodine, apple cider vinegar and DMSO, all of which I am taking myself to prevent illness. Drs only study symptoms and drugs, they are not required to do any courses in nutrition. It sounds rediculous but that's the way it is. B vitamins and magnesium are some of the most common deficiencies in developed nations. Acid ph is the underlying cause of most inflammatory illnesses.

I have one friend who used to have chronic fatigue and is treating it with colloidal silver. It is my very strong conviction that most chronic illnesses including IB and CD are caused by an imbalance in the body and yeast infection of the digestive system. That is why you need to boost your immune system not suppress it. The yeast needs to be killed first and there are lost of natural and safe ways to kill yeast, fungus and bacteria. Iodine, colloidal silver, dmso, even a simple herb like turmeric. You need to understand what you have before you can treat it. Sugar and glucose feed yeast so your doctor should put you on a no carb diet. I hope you can forgive me for frightening new members. I let my own fear take over. This may be my last post.
 
Clash

Clash

There is no need to leave the forum! It is hard to determine tone and intent in a post. Most of the people that find their way to this thread are new and overwhelmed. There are already have fears and the way your post came across was as if you were feeding on those. There are plenty of places on the forum to post your advice/experience! I'm not sure what you mean by a doctor that has found what cause crohns? Do you mean flare ups or the disease itself? Noone has solved the mystery of the disease itself but there is a lot of good info on treatments, mainstream and alternative, that can assist healing when in a flare up.
That is great news that your friend is in remission I hope she remains in remission! It's great of you to be so willing to support your friend!:ysmile:
 
giftedbyadoption

giftedbyadoption

I find it odd you are on here if you have known of the illnesses we are suffering with and then to come on here and scare the people like this is even worse. Supporting your friend is great but giving your opinion and treatment info about a disease you have NO clue about is crazy.

I recently underwent a Ileostomy surgery in January and I know the pain and suffering of crohns patients as well. If the remicade can help them eat and have less stomach pain then I would use it for that as well.

Its the moderators choice whether you stay or not, but as I said to you before, you need to LOOK if you are going to ASSUME you know what you are talking about?? RA can not be treated by those things you mentioned maybe helped and lessened, but with out remicade or a immune suppressant my joints will be eaten away and I will end up in a wheel chair or worse.
 
David

David

Co-Founder
Location
Naples, Florida
Leelee said:
This may be my last post.
Click to expand...
It is.

Sorry for the interruption everyone. I know you're all well aware of the potential side effects of Remicade and have weighed the pros and cons and came to a final answer after much deliberation. You all have my utmost respect for being such courageous people. You're all stronger than I am. Don't let people like Leelee get you too upset.

*hugs* to all of you.
 
giftedbyadoption

giftedbyadoption

Thanks David! Have a great 4th of July!!:ghug:
David said:
It is.

Sorry for the interruption everyone. I know you're all well aware of the potential side effects of Remicade and have weighed the pros and cons and came to a final answer after much deliberation. You all have my utmost respect for being such courageous people. You're all stronger than I am. Don't let people like Leelee get you too upset.

*hugs* to all of you.
Click to expand...
 
Clash

Clash

Leelee said:
Hi all,
I am new and I am here for a friend, not as a patient. I feel badly about my tone on this thread. I am sorry for posting something that was out of line. I am really scared about everything I read here. I may even ask the moderator to take me off because I thought I could learn something but my friend is already in remission and I only use alternative therapy. I don't sell anything and I thought this forum was for discussing all options. The links I put were for magnesium signs of deficiency and the other was an article written by a doctor who understands what causes crohn's and what to do about it without drugs: dmso for anemia, melatonin for soothing free radical damage, pig duodenum for lacking enzymes and a special diet while you heal up. That's it.

I have been researching cancer for the last month and found the last webpage through that line of inquiry. I wanted to have a discussion about safe alternatives because I care about you. If you google the things I am looking at you will see why I wanted to talk about them here. Magnesium is not patented so is really cheap, same with melatonin, iodine, apple cider vinegar and DMSO, all of which I am taking myself to prevent illness. Drs only study symptoms and drugs, they are not required to do any courses in nutrition. It sounds rediculous but that's the way it is. B vitamins and magnesium are some of the most common deficiencies in developed nations. Acid ph is the underlying cause of most inflammatory illnesses.

I have one friend who used to have chronic fatigue and is treating it with colloidal silver. It is my very strong conviction that most chronic illnesses including IB and CD are caused by an imbalance in the body and yeast infection of the digestive system. That is why you need to boost your immune system not suppress it. The yeast needs to be killed first and there are lost of natural and safe ways to kill yeast, fungus and bacteria. Iodine, colloidal silver, dmso, even a simple herb like turmeric. You need to understand what you have before you can treat it. Sugar and glucose feed yeast so your doctor should put you on a no carb diet. I hope you can forgive me for frightening new members. I let my own fear take over. This may be my last post.
Click to expand...
Woah, I'm confused. When I posted my response to this, only Leelee's first paragraph was showing up on my mobile. This has happened two or three times, I feel like it is a problem with my mobile since it does not happen with any of my other devices. My response may have been some what different had I been able to read her post in it's entirety! Oh well, moving on! Good luck to all of you who are starting Remicade I hope it works wonders for you!!
 
amyh

amyh

Maybe if Leelee would have posted in the diet section or alternative treatment section, it would have been better received. People in the Remicade club are already well aware of the side effects, and it is worry some, but when you weigh the pros and cons, modern medicine does have it's place. I've been wrestling over the choice for a couple of weeks, and becasue I need to be a mom to my 2 children, I decided to go the Remcade route and see how that goes. If I can't tolerate it, then I'll try something else. I'm all for natural healing, but have decided to do Remicade anyway.
 
giftedbyadoption

giftedbyadoption

I agree...
I am not on Remicade for crohns its for RA I have been on it 5 years... though and I also had colonic inertia before I lost my colon in July I now have a Ileostomy. I know it did help my stomach pain to so I HOPE and pray it helps you and your crohns :) good luck and if you need to talk or have any ?s about remi let me know.
Lizz
amyh said:
Maybe if Leelee would have posted in the diet section or alternative treatment section, it would have been better received. People in the Remicade club are already well aware of the side effects, and it is worry some, but when you weigh the pros and cons, modern medicine does have it's place. I've been wrestling over the choice for a couple of weeks, and becasue I need to be a mom to my 2 children, I decided to go the Remcade route and see how that goes. If I can't tolerate it, then I'll try something else. I'm all for natural healing, but have decided to do Remicade anyway.
Click to expand...
 
tots

tots

Location
Austin, Texas
I have now had my second Remicade treatment and for the record it was cheaper than I expected $6200 but, 6 patients and one toilet!?! Seriously??

Anyway- I do feel better- but, I am not in remission as some foods still really cause problems- ( foods that should be ok for me) I am hoping as time goes on it gets better. My Dr took me off Entocort then put me back on. Also- in reading my last bill from the Dr I have small and large bowel Crohns. So things have progressed. :voodoo: So I am guessing the Entocort wasnt doing the whole job- its only for the small bowel??

Any advice?

David thank you for all the work you and the other moderators do!:dance:

:Flower:
 
Trysha

Trysha

Moderator
Staff member
Has anyone received Remicade while in remission?
I am currently going through the preliminary process, ie tb tests, labwork, chest xray---
while waiting for the government drug benefit plan to get through.
In the meantime I am feeling much better, very little pain, occasional nausea, fairly normal bms.
Have the docs made the right decision to treat me? I know I reluctantly agreed but felt I had to in view of the previous flare. But if the remission keeps up, do I really need to go through this unknown and hazardous course.
I would be interested in some feedback, especially from those who have received Remicade.
Trysha
 
sfmreb2

sfmreb2

I would suggest asking the Dr if you could postpone for a few weeks, but continue with the paper work . Then see how you doing.
 
M

Mycah

Hi, everyone! My name is Mycah, and I am 18. I started Remicade treatments last September, due to the fact that my ileocecal valve closed to about 1cm. I have been asking questions on various sites, and eventually I was led to this thread. Reading what I can, I am kind of thankful that so many have what I have. I would never wish Crohn's on anyone, but it helps to know I am not alone.
I was wondering two things. First of all, I have had various skin problems for years, which I know can be a result of Crohn's disease. But since starting Remicade, I have developed very strange red spots in random places on my body. I have had eczema all of my life, seborrheic dermatitis most of my life, and shingles, so I know that it is not any of those. These spots are larger than acne, but not too large. They started on the back of my right thigh, beginning with pain, and going to itching, and now they are just annoying. They have appeared on my shins and calves, my forearms, my underarms, my stomach, my lower back, and my breast. I'm not sure what it is. I was told it may be an allergic reaction to Remicade, but they showed up in February or March, and I started Remicade the September before. It seems too late. I was wondering if anyone else has had the same experiences?
 
M

Mycah

Another question I have. I stated that I began Remicade in September, with my loading doses going into October. I have had 7 treatments, and my next one will be on August 12th.

On June 18th, I had a CT scan to see where I am, and how far along I have gotten. I was told that I am "making improvement". I know that this is a good thing, but I am slightly discouraged. I expected Remicade to make more of a difference in my life.

After the loading doses, and the first couple after, I noticed a difference in my symptoms. There was actually a day, January 6th, to be exact, that I had no pain, for the first time in 10 years. I always have pain, some worse than others, but it is always there. That day was the best I have had in a long time. But now, it seems like the Remicade is not making much difference.

These last few weeks, I have stayed in bed more, stayed home more. Last Sunday at church, I went home due to pain and nausea, and this was not unusual in the past month. I don't know if the Remicade does not work for me, or if I'm not noticing enough. When I got the news back about the CT scan, it showed me that it is working, but slowly.

I start college on August 24th, and I was hoping that I would be in remission or done with Remicade when I started school. It would make everything so much easier.

I am very frustrated, and I was wondering, how long does it take? Is there anything I can do, or am doing wrong?
 
amyh

amyh

could it be staff infection since your immune system is low? I'd try cleaning the boils with rubbing alcohol or a weak bleach solution several times a day to see if that kills it.
 
E

ellewoods

I just wanted to give a quick update and share an odd symptom I received during my infusion.

First and foremost, I had an MRI a month after my 3rd infusion, and the results showed a lot of improvement: My ileum is no longer inflamed, although there is still some thickening there. I still have pain in that area sometimes, but it's nowhere near what put me in the hospital. Cautiously optimistic on that front.

I had my 4th dose, and my first non-loading dose, today, and pretty much immediately after the rate increased I started to experience extreme panic and anxiety. (I hadn't had any symptoms before this dose.) I told the nurse right away, and she stopped the machine, then restarted at a lower rate. She said this reaction wasn't uncommon, and that it was likely associated with the rate of infusion and not the drug itself.

Wanted to share in case others out there have a hard time telling what symptoms they should speak up about! Hope everyone is doing well.
 
sfmreb2

sfmreb2

ellewoods,

From what I have heard it is very rare to have panic attacks during Remicade or it is not reported. I have never had that problem after about 10 years of getting Remicade. Usually the Benadryl puts me to sleep and I wake up when they bring me lunch. It sounds like you are watching them close and you have a good nurse. One time the pharmacy did mix it wrong and only used have of the saline and they had to remix it. I hope it continues to work for you.:)
 
E

ellewoods

Hmm. I have a history of anxiety and just started Wellbutrin, which has been activating to me in the past, so that combined with the fact that it was my first non-loading dose could have been the perfect storm.

I'm going to stay as optimistic as possible! Especially since I felt fine once she lowered the dose.
 
T

twylasmom

My 12 year old daughter has been on remicade for 1 and a half years now. She is starting to have some side effects from it. This week we are fighting a case of the shingles. Yea I know shingles at 12. Well thanks to remicade a child who has had the chicken pox can develop shingles. They suck almost as bad as crohns. We're really starting to wander if we should try to wean off of remicade. Her gastrologist is impossible to see. All she has done since Nov. of 2011 is read her blood work and have the nurse call and tell us my daughter has to have her infusions every 7 weeks now instead of 8. What started out as an 8 week program is now a 7 week. I think this is going backwards.

She hasn't had any panic or anxiety attacks while doing the infusions. I didn't realize this was also a side effect. I'm beginning to question the whole remicade thing.

Does anyone know how long a person can do this treatment without any long lasting issues? My daughter is only 12, I can't imagine her being able to do this forever.

I hear alot of adults say how much it has improved their lives, and yea her life was been improved by it but I'm still kind of concerned. I didn't have anyone really tell me the side effects.

If anyone has any suggestions or thoughts I'd love to hear them. I quess I'm scarred I haven't made the right decision with her treatment. Before she was diagnosed I had no idea what crohns even was and I still don't understand all of it. I quess this week has been the real breaking point of it all. I wish I had her ability to go on with all this like it is just okay and live life the best you can.

She is such a tropper. She didn't even want to take the tylenol with codene that her family doctor wanted to give her for the shingles. So she just took regular tylenol and that was because I made her so that she could sleep relatively peacefully.
Sorry for going on and on. I just needed to talk about it.
 
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R

RAISINGMI

Twyla's mom -- my son is 13 and he's been on Remicade for 5 1/2 years. There was a time about two years in that the doctor changed him from 8 weeks to 4 weeks because he was flaring and the doc wanted the remicade to get in front of the disease (if that makes sense). He then slowly took him back to an 8-week schedule. So, changing the schedule doesn't necessarily mean failure. It gives the medicine a chance to take charge of the disease, rather than the disease taking charge of the whole body.

I can't speak about the shingles, I've never had that experience or heard of it being a side effect. BUT, since the immune system is compromised, I guess anything is a possibility, and I'm so sorry your daughter has to go through that.

Remicade has been a lifesaver for my son, and I don't regret the decision to put him on it as soon as he was diagnosed. I would say explore every option with your GI doctor, and ask him to explain why he (or she) thinks Remicade is the best option for your daughter. I asked the same of my son's first doctor and felt very reassured. You don't want to give the disease a chance to flare and take a stronghold - that could leave your daughter scarred and fighting it for years before getting it back under control.

I know it's difficult. Especially as a mom, because we want to take the pain away and we can't. All we can do is make the decisions we know how to make for the benefit of our kids. {{ hugs }}
 
M

markcif

Hi everyone , new to the site , but not new to the disease or the treatment options, Im seeintg alot of people with questions regarding remicade, I am going to post some general observations that I think people miss at first.

1- some of you/us will be allergic to remicade, and its a very tough reaction. Please - ask / to get benedryl and tylenol before the remicade infussion even starts - this will add time onto your treatment - you can also be given a steriod drip as well - but its a must for some of us. If you have ever had a adverse reaction , dont be scared , dont give up just please get the proper pre-medication. Please also its important to note that you can have an adverse remicade reaction days after the initial visit. You can also feel it in your joints.

2- its still not determined how long remicade stays in your system while its actually working - that test is on going and at my visit they asked If i would participate in that test. They just dont know how long its stays in your body AND WORKS...

3- for those who can get off remicade and move to humira - talk to your doctor , seriously its a lesser strength but the results are very similiar and the ease of the medicine is that much better....

I have some good days and some real bad ones...but after having major surgery about 7 years ago , I have just been dealing with "living with " the side effects that come with Crohns... but fortunatley gone are the days of being curled up in the bed afraid to go out.....
 
curlywatts

curlywatts

Blisters

sandylou said:
Hello! I'm new here, but not to Crohn's. I was diagnosed 18 years ago. I've gone through 2 rounds of Remicade, in 2000, and in 2002. About a month after the second round, I had a major problem with little blisters on my feet and legs, and hands and scalp. (I lost all of my hair). The demotologist said it was because of the Remicade. I was sad, because the Remicade made me feel so much better. The doctor said I couldn't have it any more. I've wondered if anybody else has had this type of reaction?
Sandy
Click to expand...
HI, I searched for "blisters" and this is the only post I could find.

I have had four doses of infliximab, the last one being eight weeks ago and I was due to have my 5th this Friday but about a month ago I too started to get little blisters all over my hands and the have steadily got worse until my hands are now covered and very sore.
I also have a few on my knees and feet.
I have seen my own GP and he has given me some steroid cream which hasn't done much so far.
I go to see my Crohns consultant on Friday to see if the infliximab is the cause.

Has anybody else had a similar reaction?

PS. I looked up the condition and it looks like "POMPHOLYX".
 
Last edited:
SarahAnne

SarahAnne

curlywatts - That sounds similar to what I had a few years ago. It actually started before I had my first Remicade dose, though. My hands were covered in blisters that would itch, and they I had them on the soles of my feet as well.

My GP said it was dyshidrotic eczema - basically eczema of the hands and feet. I had the steriod cream as well but I hated it because it didn't relieve the itching and the side effects were unpleasant.

It eventually cleared up, it might be due to the weather. My doctor said the heat will make it worse, and I had been outside gardening a lot. I still get it now and then, though not as badly as the first time. Usually when I take hot showers and let my skin get too dry.

Did the GP diagnose it, or just give you the cream? Let us know what the consultant says, I'm curious as I haven't read anything about this being a reaction.

Good luck on Friday!
 
cmichael

cmichael

I've been having iytchy skin, small bumps they said was just dermatitis. I've been using steroid cream and hydrocortozone cream and the dermi dr said just keep trying and use which ever works. He had me on prednizone when it was at it;s worst and it cleared up. However the itchy bumps are back and I think its a chrons thing too.

I'm going thru the preliminary tests now for Remicade and hope to start soon. My main sympton is sore itchy but cheeks and external tags which produce a pink, clear or very lite yellow mucas from my anal area. Now i know what the ladies go thru when they get their monthly visitor, only mine is not going away (yet).




Mycah said:
Hi, everyone! My name is Mycah, and I am 18. I started Remicade treatments last September, due to the fact that my ileocecal valve closed to about 1cm. I have been asking questions on various sites, and eventually I was led to this thread. Reading what I can, I am kind of thankful that so many have what I have. I would never wish Crohn's on anyone, but it helps to know I am not alone.
I was wondering two things. First of all, I have had various skin problems for years, which I know can be a result of Crohn's disease. But since starting Remicade, I have developed very strange red spots in random places on my body. I have had eczema all of my life, seborrheic dermatitis most of my life, and shingles, so I know that it is not any of those. These spots are larger than acne, but not too large. They started on the back of my right thigh, beginning with pain, and going to itching, and now they are just annoying. They have appeared on my shins and calves, my forearms, my underarms, my stomach, my lower back, and my breast. I'm not sure what it is. I was told it may be an allergic reaction to Remicade, but they showed up in February or March, and I started Remicade the September before. It seems too late. I was wondering if anyone else has had the same experiences?
Click to expand...
 
curlywatts

curlywatts

This is a difficult one.
I have had it before (not as bad) about 30 years ago and I agree the heat seems to make it worse.
But why it starts now I don't know, with all these drugs it's hard top know what causes what.

I will let you know what consultant says in the mean time I will try to attach picture.
 
Lisa

Lisa

Adminstrator
Staff member
Location
New York, USA
That looks like MY HANDS - although mine were not as bad....best I could come up with was palmar-plantar pustular psoriasis....

The little bumps are filled with a yellowish pus?...then pop and dry....?

Mine is cleared up for the most part on its' own - every now and again I get a pustule or two but nothing as bad as when it first broke out.
 
B

BadGut

katiesue1506 said:
Hey guys... I wanted to make you aware of a resource... my doctor enrolled me in this rebate program by Centacor and here's the website for it http://www.centocoraccessone.com/

If you qualify for the program they will provide up to $400 dollars in a rebate for the out of pocket costs you pay for Remicade. They also offer patient assistance like sending you appointment reminder cards, and my lady is going to call me after my infusions to see how they go.

Kinda cool.
Click to expand...
There is also a Remistart Program that helps with the funding of Remicade.
 
B

BadGut

Have any of you had chronic infections while taking Remicade? I was on Remicade for about 10 years and I was taken off because it was believed that my chronic sinus/ear infections were caused by Remicade. I just wanted to give you a heads up and that no matter how bad you feel if you have an infection SKIP THE INFUSION. I know it is hard to do but this could help keep you from being in my "shoes".

I want to return to Remicade so bad but the doctors are still trying to find the source of my Mastoid Bone infection and why I'm losing my hearing. It has been 4 years now...still no answers.

Now on Cimzia and not doing as well for me
 
tots

tots

Location
Austin, Texas
I signed up with the Remistart program. Twice. Have never
gotten a reminder call. Or a follow up call.

I have had my third treatment and still having pain and diarrhea
How long is a reasonable time to think of being in remission?

Thanks in advance for your answers

Lauren
 
P

Poppysocks

Is Remicade ever going to become a generic drug so you don't have to pay so much for it? Or is it already a generic drug? How does this work? Really appreciate the help.
 
Clash

Clash

I think biologics work differently than regular drugs. With regular drugs a company can just replicate the chemical compounds and produce the generic with out having to replicate the clinical studies. With biologics you also have to conduct the clinical studies to show that the biologic you are producing will create the same results. At least I believe I read this in a recent report. So generics will not be as cheap to replicate because you have to conduct the studies. I could be off a little on the reasoning if so someone please correct me.
 
ttowntiger87

ttowntiger87

I am new to this particular thread. I just went to the Dr. on tues. and after hearing that Asacol wasn't helping me, he has put me back on budosenide and is going to put me on Remicade. So everyone knows my history, I have an inflamed illeocecal valve that was so swollen the Dr. had a hard time intubating it during my colonoscopy, also, I have about 3cm of my terminal ileum that is inflamed and has ulcers. I have a very hard time having bowel movements. Sometimes I can go 9 days without having one. It is very painful and I have a lot of nausea. I have been reading up on Remicade. This site is invaluable as a tool to go to when you need answers! I am very nervous about starting this medication as I have seen a lot of you have horrible side effects! However, a lot of you also have given it rave reviews. I am concerned about the out-of-pocket expense. Reading this site gave me some great ideas on how to cut the cost. I just want to say "thanks" to this whole site...it has given me great hope!
 
sickinlk

sickinlk

Hi i'll be joining soon. have been through all the meds and nothing has put me in remission so far. ah, the elusive remission, how i'd like to know you.
tried pentasa, (pills and suppository), asacol, salofalk enemas and mezevant xl, predisolone (pills and ememas).
No change, most made things worse.
I have to skip the 6-mp and imuran step because i have chronic pancreatitis.

QUESTION?
What work up are yous all on about?
ie what tests did yous all have b4 they started?

Ju
 
Clash

Clash

My son had to have a PDD skin test which is the test for Tuberculosis before starting Remicade. Now that he has started he has his bloodwork(just CBC I believe) done at each infusion.
 
Lisa

Lisa

Adminstrator
Staff member
Location
New York, USA
I had a TB test done, don't think there was anything else special....

I may be battling a minor sinus infection right now...they are stuffed up, but no real discharge...slightly tender but no swelling evident....ugh just hope it goes away and dosen't blossom into anything else....mini vacation planned for next weekend!

Next Remicade infusion is Aug 13th after a camping trip to Maine with some friends...looking forward to that!
 
sickinlk

sickinlk

Clash said:
My son had to have a PDD skin test which is the test for Tuberculosis before starting Remicade. Now that he has started he has his bloodwork(just CBC I believe) done at each infusion.
Click to expand...
Thank you for your quick reply. i am having a chest xray and some other skin test on monday. im sure the nurse said men2 test? ring a bell with any1. maybe i got it wrong but it sounded like that.

Ju
 
Clash

Clash

If you have any questions about your upcoming tests I would call and discuss them with the GI nurse or Doctor and have a list ready covering your concerns and questions. It can really help calm any anxiety you may have. I have no information for you on MEN2sorry. But maybe someone will be along shortly with more experience with that test. Good luck on the infusions, they seem to working really well for my son.
 
curlywatts

curlywatts

curlywatts said:
This is a difficult one.
I have had it before (not as bad) about 30 years ago and I agree the heat seems to make it worse.
But why it starts now I don't know, with all these drugs it's hard top know what causes what.

I will let you know what consultant says in the mean time I will try to attach picture.
Click to expand...
Hi again, Doc has taken me off infliximab because of the reaction and is sending me to see a skin specialist.

If I have another flare up (crohn's) he says an operation is what he thinks is best.
 
Trysha

Trysha

Moderator
Staff member
sickinlk said:
Thank you for your quick reply. i am having a chest xray and some other skin test on monday. im sure the nurse said men2 test? ring a bell with any1. maybe i got it wrong but it sounded like that.

Ju
Click to expand...
The skin test is called a Mantoux test for TB and prior to Remicade they do a two stage Mantoux.
PPD means purified protein derivative and is inactivated treated TB antigen.
When the first skin test (Mantoux) is negative they do a second test a week later to check for latent TB.
If this second Mantoux skin test is positive then it is necessary to treat for TB before the Remicade is given.
If negative then the Remicade can be given.
Hugs
Trysha
 
Lisa

Lisa

Adminstrator
Staff member
Location
New York, USA
curlywatts said:
Hi again, Doc has taken me off infliximab because of the reaction and is sending me to see a skin specialist.

If I have another flare up (crohn's) he says an operation is what he thinks is best.
Click to expand...
Oh thtat stinnks they are taking you off Remicade if it has been working for you otherwise.....

Seriously - this is what I went through a couple years ago and it cleared up ON ITS OWN...with a little help from steroid cream.....every now and then I get a few pustules but nothing major so far....been on Remicade the whole time too....at every 8 weeks...

Hope your hands clear up - I know first hand it isn't any fun!
 
sickinlk

sickinlk

Trysha said:
The skin test is called a Mantoux test for TB and prior to Remicade they do a two stage Mantoux.
PPD means purified protein derivative and is inactivated treated TB antigen.
When the first skin test (Mantoux) is negative they do a second test a week later to check for latent TB.
If this second Mantoux skin test is positive then it is necessary to treat for TB before the Remicade is given.
If negative then the Remicade can be given.
Hugs
Trysha
Click to expand...
mantoux, yeah that sounds like men 2. lol. thanks for that. so itll be a 2wk wait at least b4 i get started.
Ju
 
sickinlk

sickinlk

hi all, i think ive had a positive mentoux test. i have a swelling that can be felt over 10mm in length. im freaking out. does that mean ive got tb? and that i cant start remicade?
wtf, whats next.
 
sfmreb2

sfmreb2

Relax, you could have a false-positive. Let the Dr figure it out. There are other test to figure out if it is a false-positive.
 
Trysha

Trysha

Moderator
Staff member
The first Mantoux if positive could mean that you have been exposed to TB and
could have an immunity to it.
It could also be a false reaction.
Don't let it worry you and wait for the professional interpretation of the result.
Feel better soon
Hugs and best wishes
Trysha
 
sickinlk

sickinlk

sfmreb2 said:
Relax, you could have a false-positive. Let the Dr figure it out. There are other test to figure out if it is a false-positive.
Click to expand...
well the doc measured it and its 7mm so she thinks my Gi will be happy enough to go ahead. have to wait and see now. Also ive had the BCG injection when i was a baby so ive been exposed b4.
cant help wonder though cuz i did work in a care home.
Im sure they'll do a blood test to make sure,

Ju
 
j.bug

j.bug

Location
Grand Rapids, MN
Hi All. I am starting Remicade very soon (hopefully) and I am pretty scared! All of this is new to me, including this site, but I have seen some awesome reviews here for remicade and it has turned my day around! I have been so afraid and so stressed about this!!! I have already had a CBC and HEP Panel done, I was recently hospitalized with chest x-rays, so they know I am TB negative, and insurance has approved the treatment...so now I just wait...which is agonizing!!!!
I have a lot of pain with my CD and I was wondering about others here who have had lots of pain with theirs. Did starting the remicade help? I currently take liquid dilauded for my pain and want to get off opiods. Thanks!!!!
 
Crohnaroideramasis

Crohnaroideramasis

Remicade for me has been a miracle drug. I too was zonked out on opioids for the pain. Since about my fourth i fusion I was off opioids!! Yay! Now, I have close to zero pain on great days! Certainly, we all sometimes can still eat the wrong thing and have a few bad days here and there. But the degree of bad is so much less with Remicade! Good luck to you!! Wish I could give a guarantee, but the longer I'm on this site, the more I realize this disease CD can be so very individualized in its symptoms, reactions to medications etc.
 
M

maykel

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.
 
sfmreb2

sfmreb2

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.
Click to expand...
Have you tried lomotil? It used to be the only thing to get me out of the house.:hang:
 
tots

tots

Location
Austin, Texas
Black tea- ( not sure about other kinds) has tanic acid (sp)
its Smooth muscle relaxer. Won't stop
It but will help. Again Imodium. lomotil. And the pain meds
I am by no means a wimp but have almost passed out from the
pain.

Hope y
 
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